Doctor Horror Stories

celiac doctors

In 2007, after a year of constant stomach pain and losing 15 pounds on an already pretty slim fit, I finally listened to Mrs. Dude and went to see a GI.

(The lesson as usual? Mrs. Dude is always right and me…not so much.)

After speaking with me for only a few minutes and viewing my food diary, the doc asked me if I had ever heard of celiac. I had not.

And so my journey began.

I didn’t realize it at the time, but I was extremely lucky to have been diagnosed so quickly.

You know what the average time is for a celiac diagnosis? 10 years. 10 friggin’ years.

And even after we finally get the diagnosis, we are simply told to not eat gluten and are shown the door. That’s it. No follow up care. No nothing. We are on our own to begin a new life that we know nothing about.

Is it because there’s no drug to cure celiac and so there is no financial incentive for the medical industry? A cynic might think so.

Over the past few years months, you’ve shared doctor horror stories that have absolutely floored me.

These stories need to be heard…and I’m just the guy to do it :)

Let’s raise awareness and at the same time, push the medical community to try and get their sh*t together.

If you’ve got a Doctor Horror Story to share, write yours in the comments section below.

Together…we CAN make a difference.

After my doctor couldn’t figure out why I was having so many issues with my digestive system (stabbing pain, nausea 24/7, cramping and a belly so bloated I looked pregnant) she sent me to a GI specialist.

I spent maybe fifteen minutes with the GI. She asked me to describe the pain and what I did to manage it (slept, heating pads, ate LOTS of crystallized ginger for the nausea). Then she felt my stomach. She decided I needed to take laxatives…everyday. She also prescribed me a very strong painkiller. I asked her what I could do to PREVENT the symptoms I was having. Her response, “As long as you take laxatives you’ll be fine.”

At that point, I was desperate for anything so I tried the laxatives. As you can guess, that was a horrific experience! In a couple of days, I was sicker than I had ever been.

It took me another three years to find a doctor who would take me seriously. That GI should be fired. What a joke!

A year and a half ago I began to be concerned over my significant memory loss, severe exhaustion and increase in gastro symptoms. I had had stomach issues my whole life but they were either diagnosed as lactose intolerant or stress due to issues with my mother. My concern was great enough to go to the Dr.

The doctor told me, maybe I was diabetic, maybe I was just depressed. He had blood drawn and called me and told me everything was fine…wrong.

I went to a homeopath; she took me off gluten without a screen. I felt better for a month then spiraled downwards fast. Homeopath tests came back positive for 30/40 different food allergies. My body then started rejecting everything.

Went back to pcp, told him I was NOT ok. Begged to go to Boston, he only ran more blood tests. Called and said everything looks great! You are fine! Seriously? My body was rejecting all food, I was losing a lb a day, I couldn’t walk or hold a coherent conversation…and I was fine??? Finally my ANA came back high.. He sent me to a rhuemy said it was all related… Test after test for lupus she said it was inconclusive but had nothing to do with my stomach issues…wtf??

I called and begged him, crying to help me. He told me to try to get in with a G…thanks for the help bud!

My father found me one day on the couch close to unresponsive, he thought I was dying, he picked me up and rushed me to the ER. The dr. there told me, “I don’t know what you are doing here, or what you think I can do for you.”. My own Dr was unavailable and unreachable. GI took pity on me, recognized I was an autoimmune mess, as he put it. Ran tests, came up with nothing. He told me to go to Boston. Thank god!!!! I got an appt and my pcp denied the referral. WHAT????? Instead offered me another appointment with HIM!!!

I lost it…took my life in my own hands and kept that appointment. Explained my situation to the new GI, chose a new pcp and saved my own life. New docs all treated me like a human. Dx celiacs and took it seriously, dx neuro endocrine tumor on my pancreas, and took it out. I’m still in hell, but now I can see the light.

The funny thing is, about 2 months ago, the original doc’s office called offering me to sign up in his health care management program! I had already left the practice. I laughed and said are you kidding? He just about managed to kill me!!!!!

I first visited the Doctor when I collapsed at work in extreme acute pain (think appendix) when I was about 19 (approx 1996). Since then all the pains – guts, joints plus fatigue etc. In 2004 I was finally referred to specialist and diagnosed with IBS. Symptoms continued of course, and I was admitted to hospital emergency in 2011. The pain was so bad not even the morphine could stop it – but I didn’t care so much as I was high as a kite.

Was kept in for a week whilst the gynecologist and gastro doctors both pointed at each other (that was weird). All the while they were feeding me hospital food with gluten so I got to the point where I could not get out of bed, drink or eat for several days (was on a drip). I just lay there staring at the ceiling because I couldn’t read anymore. I looked a bit like a corpse. Finally someone ran a blood test and bingo – a biopsy a few months later confirmed it. So over 16 years after me presenting with the very scary symptoms, and making plans to gradually leave work due to sickness (at the age of 34), I finally got diagnosed.

From late 2007-late 2010, I tried to find out why I was in so much debilitating pain and dropping weight so quickly. I lost a drastic 90 lbs. because I could not eat or keep anything in me. My entire GI tract BURNED from mouth to rectum and even water burned doing down.

One doctor told me “congratulations on your weight loss”.Another said I needed to “do volunteer work to get my mind off it all.” (I could not even dress myself or tie my shoes)Another encouraged me to work out at a gym. I tried but kept feeling faint on the treadmill and then, my legs and back went numb.I heard “it’s just menopause”, fibromyalgia, the catch-all “IBS and GERD””…and my favorite, “it’s just stress” because my father had just died.I was offered more drugs than you can imagine: pain meds, anti-depressants, anti-anxiety meds, sleep meds, antacids, thyroid meds I did not need —and even sent to a psychiatrist– to get me to shut up and leave the office. Drugs made my already ripped up gut worse and so I did not take them. I have no psychiatric problems, but I sure as hell thought I would lose my mind.

We spent $30K out- of -pocket on tests, physical therapy, alternative doctors–anything to to help me get well. NOTHING worked.

I lost major muscle mass and tone, my ability to comprehend, articulate and recall information.

I had difficulty remembering how to cook, balance a checkbook and drive my car, and I suffered insomnia, sores, burning skin, and severe burning neuropathy, numbness, parasthesia and weakness. I banged into walls and tripped down stairs, becoming covered in bruises. I was propped on the toilet when I was passing everything and washed down with cold clothes to keep me conscious.

My poor husband thought I was dying.

I had horrid joint, bone and muscle pain, pelvic floor pain, and kidney and liver pain. I was unable to walk the length of my driveway without gasping for breath, acquiring anemia, losing my hair. I was unable to walk, stand, lie down or stand without agonizing pain.
No doctor could tell me what was wrong. FOR 3 YEARS.

Our life came to a stand still as my husband watched helplessly while I went downhill. I forced myself to keep moving so my muscles would not atrophy as my buttocks and muscles wasted. I dragged myself around and researched endlessly to figure out what the hell was going on.

I was told “it could not be celiac” because my blood panel was negative and “no one in my family has it”. (well, someone has to be diagnosed first for that statement to be relevant and blood panels are negative often enough to keep people undiagnosed!) The GI doctor I saw for years did an endoscopy yes, but failed to biopsy me while down there, yet t I did not know this until a year later when I finally saw the report. (lesson? never trust the word of a “nurse practitioner”–ask for the report and read it yourself!)

They were all Wrong. Wrong. Wrong.

I’ve always known something wasn’t right. Everybody always seemed healthier, energetic, happier than me. I have weird issues that nobody can explain. Depression, anxiety…they threw pills at me for that. My skin sometimes hurts in a weird tingly ice cold pins and needles way, and I get weird rashes on my scalp that make me look like I’m scratching at lice bugs. I can’t remember things.They did some tests but nothing came of it (terrified me half to death when they scanned for brain tumors).

When nothing conclusive was discovered I was just…forgotten.

Who cares if this 21 year old has joint pain? It’s just inflammation, take it easy, take some more pills, and it will go away. I got labelled a hypochondriac. I was making it up.

Then, about 3 months ago, it was as if my body just gave up. I had no energy to do anything. I was anxious all the time, and I was hospitalized for severe inflammation in my chest that had me on bed rest for 2 weeks. Then I started getting ‘actually’ sick. In a way that counts, I guess. Up at 3 am, going to the bathroom every 20 minutes. Getting incredibly nauseous after eating. I lost a lot of weight in a very short time period. Finally my doctor figured shit out. Countless tests later, and he set up an appointment to talk about the results.

I was told I have Celiac. That I can’t have gluten. That I probably inherited it.

I was told if I cut gluten out completely, I would feel fantastic and everything I’ve been complaining about since I was in my early teens would go away.

“What is Gluten?” I asked.

“It’s in wheat. Just watch out for it. Read labels.”

Then I was sent on my way.

They gave him some breathing stuff to calm his lungs down and then the nurse brought in this wonky looking pain medicine. I asked if it was gluten free (because my son has been glutened before by generic drugs) and she said “oh, I don’t know, I don’t know how you would find that out”.

Yeah, big clue that they have absolutely no idea. So I refused the drug – the last thing my son needed was severe stomach pain on top of the breathing issues.

Then the doctor came in and proceeded to give us a 15 minute lecture about how I need to trust more and my son needs to be less anxious – he even managed to quote Reagan in his little speech. I confronted him on the fact that this seemed to be about questioning the gluten, and he denied it, but you could tell by his “speech” that it was all about him feeling the need to get us sorted out.

Apparently if my son is just less anxious then everything will be fine.

This was my first run in with a medical person who had this opinion toward celiac, and I have huge compassion for those who have to deal with attitudes like this all the time.

Growing up, I was diagnosed with IBS many times. Also lots of ovarian pain and skin problems. One dermatologist had me on tetracyclene every day for YEARS to clear up redness around my mouth and nose. I know I am suffering effects of that.I remember one specific point in my early twenties where my stomach issues were so bad I could barely leave the house. The GI doctor told me that I was stressed and need to “lie on the floor and listen to music”. He also prescribed me heavy meds which I didn’t take.

I did have warts on my hands and feet off and on growing up and into my early twenties. I suffered on and off with depression and heart palpitations. Now when I get glutened, I go into IMMEDIATE depression mode. It’s amazing. I know I’m getting better when my mind clears and I am happy again.
Right before my diagnosis, I was having major bladder pain. I was diagnosed with interstitial cystitis but only by the questionnaire, not by a chemical test. It seems that my bladder issues only flare up when I am glutened, so I am not sure about whether it’s a celiac symptom or true IC.

I have always felt like I had many more doctor visits than anyone else I knew growing up.

And I always felt like I had to convince doctors that my issues were real.

It took 30 years to figure out what was wrong. In that time I saw 60-70 different doctors, got tested for a ton of stuff (can we say the majority of these were intrusive and uncomfortable, if not downright painful) and had more drugs thrown at me than you can shake a stick at.I did get a diagnosis after biopsies were done and got cut loose. The instructions I got were “Don’t eat wheat, barley or rye; there’s the door.”

Years of being miserable, too sick to hardly do anything but drag myself to work and lay on the couch. Constant pain, vomiting, weight loss, GI bleeding, the list goes on and on. What 24 year old girl should be living on a diet of baby food and applesauce because she can’t keep anything else down?After being tested for celiac about 5 different times and it being negative for some unknown reason it finally came back positive!! Also they did genetic testing that showed I had genetic mutations that made me prone to celiac. Been on gluten free since September now and feel so much better.

But, once the doctors saw I was better, they said “see ya”; call us if you get sick again. I went from seeing my doctors more often than my boyfriend to “call us if you get sick”?

I remember clearly when my GI doctor diagnosed me with Celiac Disease. I asked him for some help with the gluten-free diet. He had his nurse xerox some antiquated and hopelessly simplistic list of foods to avoid. It was maybe a list of 10 things that included: noodles, bread, pasta, cookies, cakes, pies, crackers, etc. Gee, thanks a lot, that’s a BIG help.Then I saw a “dietitian” in town who didn’t have a clue about the gluten-free diet, nor what Celiac disease was. Wasted $300 on her.

The medical people I saw, including the doctor who diagnosed me, were useless. I was referred to a dietitian who didn’t know much about Celiac, aside from a xeroxed sheet of things she “thought” I “might” be able to eat that some other patient had left.Truth is, if it weren’t for the Internet and a few good books, I don’t know what I would’ve done.

The medical people I’ve seen have been ridiculous. Most doctors don’t learn much about it in med school and there are no pharma reps hawking cures for it, so they don’t understand it.

After countless trips to the ER, several days admitted to the hospital, 2 months of constant vomiting & diarrhea, 3 sets of xrays, catscan, ultrasound, and blood work constantly…all at a prestigious pediatric teaching hospital…my once robust, then failure to thrive, almost 2 year old was diagnosed by ME, because I got sick of every doc telling me it was a virus and give it time and lots of calories, maybe a big stick of bread.Any more time, and any more bread and my baby would’ve been dead.

The ped gi specialist had missed it totally. Finally an explanation for my husbands debilitating stomach and mental health issues, which baffled countless docs for 15 years.

No. I don’t foresee trusting doctors ever again.

When I was a kid NOBODY (well, almost nobody) had a clue about Celiac. Especially my doctors. My mom read about Celiac in a magazine article written by Dr. Benjamin Spock when I was a very sick baby. The symptoms she saw matched exactly with what was written by Dr. Spock.

She asked my pediatrician about the possibility of Celiac, and I’ll paraphrase what she was told, based on conversations with her. This would be in 1961. “Now, now, Celiac is only seen in third world children, you know, colored kids. White babies aren’t susceptible. So stop worrying your pretty little head about it and go home and enjoy being a mommy!”She gave me a rice formula which stopped the symptoms, and I got better. I stayed better until at the age of 14, I started having diarrhea a lot. By the time I was 16 I went into the hospital. By this point if I ate anything ten minutes later it had passed through undigested. My doctor (the one I pooed on, ha ha) had given up and told my mom he was going to take out my colon and leave me with an ostomy. Mom said “Hell NO!” and ten minutes later I was in the car heading home.Another doctor in another hospital did a biopsy and diagnosed Celiac. My mom then remembered the Dr. Spock article and became upset at herself, because she had figured it out already, but the patronizing pediatrician convinced her it wasn’t Celiac.Since then, I’ve had doctors suggest I try eating gluten to see if the Celiac had gone away. I’ve also been told I don’t look like a Celiac, whatever that means. So kudos to my mom for not letting my intestines get cut out. That would have really sucked.

Looking back over the years, I can see clearly now that I have lived with undiagnosed celiac for literally my entire life, which is more than 3 and less than four decades, but who is counting? As a teen I went through rigorous testing, all with no results. As a young adult I had a period where I felt “sort of” healthy, or at least the healthiest I’ve ever felt, and rarely thought about my health.Through all of this, I thought that my most persistent symptoms were normal, were how life are supposed to be. Finally, a year ago and as a complete accident I was diagnosed with celiac by biopsy when I had emergency surgery for something (seemingly) unrelated. I may have had my faith renewed in doctors if a doctor had somehow put the pieces of the puzzle together.

Instead, a doctor put a scope in me to save my life, and went “HOLY CRAYOLA!” when he saw my guts. My completely useless gallbladder saved my life, not doctors.

I spent over 13 years under the care of a doctor who got very insulted if I dare challenge his opinions. Throughout my teen years, I suffered from painful joints/muscles, numbness/tingling, stomach pains, and inability to gain weight. It became so concerning that I pleaded with him for help and was only looked at as if I were crazy. My mom could see I was suffering and challenged him on his diagnosis of ” anxiety.” He retorted, ” There is NOTHING wrong with her. She needs some anxiety medication, to eat more, and a good massage. The tummy ache? It’s just A LITTLE TUMMY ACHE! If you don’t agree with me and don’t like my medical opinion, you can go elsewhere.”well, that LITTLE TUMMY ACHE turned out to be Celiac disease! I went 6 more years destroying my body without even realizing. I experienced worsening symptoms of iritis ( temporarily lost sight in my left eye) Dermititis herpetiformis rash, chronic bruising, impaired swallowing reflex, gasping for air, extreme weight loss from 125 pounds down to 100 pounds in 1.5 months, dark circles under eyes, brittle hair/nails, excruciating stomach pain, etc and chronic sinus infections.

The doctor was finally fed up and told me I looked anorexic and ” needed to eat more.” He put me on a high powered antibiotic which unknown to me, would later come with a black box warning. As soon as a I took the drug, it was like a bomb went off in my body. I would wake up and have the pain of having my arms sawed off. Every nerve and muscle in my body was on fire. Muscle twitching, spasms, more weight loss, heavy night sweats. I thought I was dying. In fact, I was; slowly but surely.

The only one in the medical community who helped me, turned out to be the eye doctor who saw me for the iritis. He told me that iritis is seen in people with auto-immune disorders and that i had a diseased system.

I went back to my M.D and told him I had a diseased system and he LAUGHED AND LAUGHED AND LAUGHED. Needless to say, I never returned.

That is mostly because I find it hard to deal with the fact that I was undiagnosed for over 20 years, maybe 20 more. I ‘had’, among other things, stress (normal for students, apparently), ulcers, migraines, violent vile vomiting, D, wheat addiction, allergy to alcohol, seseme, caffeine, quorn, wheat. Increased weight, anxiety, depression, unexplained rashes, failure to heal from whiplash or carpel tunnel symptoms, recurrent miscarriage.Tough one to spot there.

One dietitian once said she was surprised I had never been tested for celiac, but apparently not surprised enough to send me for testing or mention it to my doctor.

I’ve had my share of problematic, egocentric and ignorant doctors. From the first GI who diagnosed me with Celiac Disease (which was correct) but telling me I could cheat whenever I felt like it. Then another GI who told me that I had “mild Celiac Disease” and that my Celiac Disease support group was filled with “paranoid” people.Then ANOTHER GI who told me that I was being “paranoid” and that I needed “psychiatric evaluation.” And my general doctor who told me that some of these health problems might be “psychological.” Well, it turned out after all these doctors said these things that my antibodies were still very elevated and I was very ill. But I had to be making it all up, right? I’m just one of those “hysterical, paranoid” types.

And I think it’s even worse for women to be taken seriously. I finally have a great GI but wow, did I have to jump through hoops to get there!

It took me a good 3 years to be properly diagnosed. In the meantime, I was mis-diagnosed plenty of times. Doctors tried to put me on all kinds of medication. Powerful meds that we totally unnecessary.Even after being diagnosed, I asked my GI doctor if I needed any follow-up care. She said “Nope! Just eat gluten-free and you’ll be fine.” Not true.

I tried another doctor and asked for follow-up blood testing. She handed me the results and said, “I don’t know how to read these.” Great.

I have been sick since I was a child and had no idea I was allergic to gluten. As an adult, my doctors have ignored me while I’ve wasted countless hours and dollars at appointments and on testing/procedures only for them to tell me it’s all in my head. How droll. I endure horrible symptoms and mostly don’t leave my house.

#NoCureNoChoice

173 Comments

  1. 1

    Katrina

    I first visited the Doctor when I collapsed at work in extreme actue pain (think appendix) when I was about 19 (approx 1996). Since then all the pains – guts, joints plus fatigue etc. In 2004 I was finally referred to specialist and diagnosed with IBS. Symptoms continued of course, and I was admitted to hospital emergency in 2011. The pain was so bad not even the morphine could stop it – but I didn’t care so much as I was high as a kite. …. (full story has been added above)

    Reply
  2. 2

    Joy

    A year and a half ago I began to be concerned over my significant memory loss, severe exhaustion and increase in gastro symptoms. I had had stomach issues my whole life but they were either diagnosed as lactose intolerant or stress due to issues with my mother. My concern was great enough to go to the dr…. (full story has been added above)

    Reply
  3. 3

    Jenna

    After my doctor couldn’t figure out why I was having so many issues with my digestive system (stabbing pain, nausea 24/7, cramping and a belly so bloated I looked pregnant) she sent me to a GI specialist.

    I spent maybe fifteen minutes with the GI. She asked me to describe the pain and what I did to manage it (slept, heating pads, ate LOTS of crystalized ginger for the nausea). Then she felt my stomach. She decided I needed to take laxatives…everyday. She also prescribed me a very strong painkiller. I asked her what I could do to PREVENT the symptoms I was having. Her response, “As long as you take laxatives you’ll be fine.” (full story added above)

    Reply
    1. 3.1

      Samantha

      I have similar symptoms to this. However, I did also have ovarian cysts (which could or could not be related, the doctor seems to think they are separate occurrences). I have seen two separate doctors in hopes that one of them would take me serious. They seem to treat me like its all in my head. I don’t want medication I want a solution. I’m exhausted all the time I could sleep all day long if I wanted to and I still wouldn’t feel like I have any energy at all. What did your doctor tell you was wrong with you? Maybe I could bring that up the next time I’m in her office and finally get some real answers.

      Reply
      1. 3.1.1

        kathryn

        I was diagnosed with Celiac Disease 2 years ago but I am not just allergic to wheat and gluten. I am also allergic to barley, rye, oats, soy, and even corn and rice. I don’t eat the gluten free foods because most are made from corn and rice flour and they make me very sick. I am also anorexic so it makes it more complicated. I went to a dietititian but she did not help me at all. I walked away more frustrated. I live on potatoes, meats, and fruits which does not satisfy me at all. Sometimes I cheat but then I pay the price for that and suffer later. I also suffer from gastritis which I am sure is part of Celiac. Any suggestions?

        Reply
        1. 3.1.1.1

          Rebecca

          Hi I have allergy reactions all the time and been tested for allergies on thesis things and all negative , thinking bowl is weak from eating food that I think is gluten and wheat free, but isn’t and damaged the bowl. If you Google hidden words for wheat and gluten it is very suprising to see what is gluten free but not wheat free
          Bec Wilson nsw

          Reply
        2. 3.1.1.2

          Heather

          Kathryn, I would recommend trying to eat Paleo to help you manage your Celiac Disease. I have been eating Paleo for 6 years, and it has eliminated my Celiac symptoms completely. Paleo is eating meat, veggies, nuts and seeds, and fruits. That’s it. Nothing processed, no corn, white potatoes (but sweet is okay), any grain at all, sugar (I do cheat on this once in a while – organic dark chocolate is my go-to and I use honey in my coffee). It works for me. There are many good books out there to help you with recipes, etc.

          Here is my story:
          I have not been “officially” diagnosed by a doctor with celiacs, but I diagnosed myself 6 years ago after working, unsuccessfully, with doctors off and on for over 30 years to uncover the root cause of my symptoms.

          After years of undiagnosed GI pain, nausea, cyclical vomiting, diarrhea as a teenager (diagnosis of lactose intolerance, ovarian cysts, and endometriosis – the latter 2 were real diagnoses), the abdominal pain and occasional cyclical vomiting still persisted off and on. Around age 35 I began having migraines with an aura and the cyclical vomiting at the same time and was diagnosed with migraine with aura and abdominal migraine. As it turns out, I am also highly allergic to any migraine meds (anaphylactic response), so there was nothing I could do but take over the counter migraine meds and go to bed in the dark for 2 days when the migraines hit. I was having migraine episodes 2x per week, and my doctor put me on lexapro, which actually did help a little. The incidence of migraine decreased to 2x per month on the lexapro – a somewhat manageable incidence. Of course, I was under the care of a neurologist from the onset of the migraine with aura – 8 years. He NEVER mentioned Celiac Disease.

          During all this time I ate “right” and exercised. I am a runner and at times ran as much as 3-4 miles per day and did weight training to stay fit. Yet, I just did not feel “healthy.” I weighed more than I ever had (I felt about 7-10 lbs over-weight) and remained unwilling to accept the answer from the doctors that I was, after all, 43, and that at a certain age we all gain weight. A friend of mine had tried the paleo diet and encouraged me to try it as well.

          I did try it and after 6 months of eating Paleo I realized that I had not had a migraine since starting the eating plan. Now I have been eating Paleo for the last 6 years, and guess what? NO MORE MIGRAINES – with aura or without, and no more cyclical vomiting! Also, the rosacea on my face (over time) has finally almost completely gone away. The neurologist indicated that there must have been something else that had changed but that I was unaware of. ……. At first, I wondered about it. Now I don’t. Anytime I have gluten (which is NEVER now but I tried it a few times to test it) I get a migraine with aura. It’s like clockwork.

          I have not not bothered to get a diagnosis. I know that there can be false negatives – all of my children were tested as babies and the blood tests all came back negative. Yet, 3 of the 4 cannot eat gluten without symptoms – vomiting, diarrhea, abdominal pain. My son has autism, and we think we see an increase in anxiety, depression, and hyperactivity in him when he eats gluten, along with abdominal pain and diarrhea. It seems to me like it would be a waste of time and money to bother with having biopsies, and even if they came back negative, it would not matter. We are not eating gluten. The evidence is enough for me and I don’t believe that the doctors know everything. This is one area where they definitely don’t know all there is to know. Our lives are dramatically improved without gluten and I don’t need a doctor to agree to know that I am doing the right thing for me and my children.

          Reply
        3. 3.1.1.3

          Dale Weatherwax

          go vegan organic. Your allergies to the grains may be an allergy to chemicals used to desiccate at harvest. But organic grains. Soy will put pounds on you. Garbanzo beans, black rice, lentils, greens (collards and kale), tomatoes, peppers, onions, squash of all kinds, etc. make your own juices.

          Reply
    2. 3.2

      Karen

      Hi Jenna,

      Your symptoms sound very similar to what my teenage daughter has been suffering for a year…..what did you end up being diagnosed with??

      Reply
    3. 3.3

      Rebecca

      I have had similar results, and still sick. Test negative but I carry one of the celiac genes. Now suffering from constant bloating , stomach rashes , off balance fatigue . Started reading labels for hidden wheat words and have seen some improvement but feel I would really like to know if I have celiac or not.
      Can’t have dairy either or alcohol. Should I push for mor testing as it had been a few years since the last test, couldn’t make it through the proper testing for celiac test last time

      Bec Wilson Nsw

      Reply
    4. 3.4

      Hillary Holbrook

      That is exactly how I would describe my symptoms. I look pregnant. The pressure I feel is like something is wanting to explode out the front of me. I cant STAND it. Even as I type this, next to my sick-in-my-bed 8 year old, I am welling up with tears. If I did not have her I would’ve ended it long before this. I have symptoms since 2012 but they have never been this bad until now.
      I wish I could attach a picture of my normal and what i look like right now. I have the same response from doctors, that I need an anti anxiety, no shit.. I cant bend over its so painful and you idiots don’t know what the hell is going on so YEAH I’m anxious. I’ve been tested for Celiac and results were negative. I also had a colonoscopy and EGD and the doc said “all clear”. Nothing saying anything other than it must be all in your head Hillary.
      I’m miserable right now, and even my own friend treats me like I just need get over it and relax and eat a sandwich or something.
      Why don’t doctors want to help? I can’t work, move even, like this and Im scared Im going to lose my job over this, which no one takes seriously. I don’t know how I’ll support my daughter, I have no support system. I don’t have family to help or anyone to keep the “family” a-float. Which is really just me and my daughter, Camilla.

      I’m sorry you had to go through that and I’m glad you had some “resolution”. :)
      Your story just struck a chord with me I guess.

      Reply
  4. 4

    Cari

    Sigh….here goes nothing.

    I can’t remember when I wasn’t “sickly”. Even as a kid, my stomach hurt all the time, or I’d have the never-ending diaper rash…you know…the red acidic mess that I now recognize as lactose intolerance butt. I got every illness coming, whether it was cold, flu, stomach virus, asthma, and even a bout with scarlet fever. However I am in a family of bread eaters, bad habits, and mental incompetencies. So whenever I would complain that a food was making my stomach hurt, my parents told me up front to “Clean your plate or you get the paddle” plus being called a hypochondriac. And if we were hungry….”Go get a piece of bread.” So I lived with the pain. Oh and I was always so tired and so short for my age. Hell if my folks even brought me to the doctor’s, the doctors would want to run tests, but my parents said no because they thought the doctors were wrong.
    I wound up at some point in my grandma’s custody. And it was there when I was 17 that I discovered the Adkin’s diet. It got me thinking. I didn’t adopt the exact diet, instead for three months, I ate a diet of fruits, veggies, and lean meat. That’s it. Voila, off comes the pounds. But it was oh so much more too. I had energy and a lack of pain for the first time I could remember. Then I went for my 18 yr old checkup. Dr comments that I did well losing the weight and asked how I did it. I told her diet and exercise. So she asked me what I was eating that worked. I told her just fruits, veggies, and lean meat. She looked at me like I was crazy, then proceeded to scold me in front of my grandma, that this was a fad diet. I told her I had energy and no pain. She said, you’re a hypochondriac who needs mental health if you think that leaving grains, ESPECIALLY WHEAT, alone. And my grandma agreed…even though my grandma has had 3 heart attacks, fibromyalgia, and weighs 270 lbs. So I was ordered…yes I said it…ordered, to start eating grains again. What do you think happened? I put on weight, had problems with digestion, was moody all the time, and all that. But I’m the hypochondriac.
    Fast forward to when I had just turned 27. By that time I had three kids, two miscarriages (one past 4 months) and I was still not a lightweight even though I’m all of 5 ft tall. I start having these shooting pains that shot back from just under my ribcage to between my shoulder blades. It was sporadic at first, so I figured, well maybe it’s nothing. Then the pain became more frequent, and started making me throw up. To the doctor I go, where they tell me “oh it’s gastroenteritis, there’s nothing really wrong”, This happened three different times in the space of a week and a half. I dealt with it for another week, until the vomiting got so bad that I couldn’t even hold down water and I was running a fever. So back to the doctor I went on a Sunday evening, where a nice PA tells me, hey I think it might be your gallbladder, although you’re young for it. Come back Thursday”. I didn’t make it to Thursday. I went to my advising appointment on Tuesday because I’m a college student, however I’m in extreme pain…I’m talking worse than childbirth. Someone says, umm Cari, why do you look so yellow? Back to the doctor I go, where I was duly shipped by ambulance to the nearest hospital. Almost 24 hrs of waiting in a jam-packed ER later (H1N1 flu in full swing), I finally was admitted and was in surgery an hour later. My gallbladder was gangrened, swelled to about 4x its normal size, and according to the surgeon, if it had waited another day, it would have ruptured. Yet no move was made as to WHY my gallbladder went, but what I do know is about a year later, everything went to hell in a handbasket. I was admittedly pregnant. I no longer have issues with constipation, it’s straight up D all the time. I’m talking bright yellow, liquidy stuff that floated and was mucousy. Clearly neither my baby nor I were getting adequate nutrition. Went to dr after doctor about this, but got brushed off as IBS, or cholesteric diarrhea (ie…you have no gallbladder deal with it), you’re pregnant deal with it, or told I’m a hypochondriac. I actually ended up in the last couple months of pregnancy with polyhydramnios with my son, and no one could figure out why. So I had him (c-section…he turned breech) and the same symptoms kept on, but now there is clear abdominal distension as well. Went to another doctor, he refers me to a GI. This was in June. GI says “oh it’s cholesteric diarrhea, but just to be safe I’ll run a celiac panel.” Bloodwork comes back with elevated TTG antibodies, but I’m told at that time don’t start a gluten-free diet yet because you need a biopsy. So I scheduled the biopsy, for August, only to come down with pneumonia in 2 lobes of my right lung, which was DX’ed three days before endo. So my endo goes on the backburner. In the meantime, I’m still eating gluten, and finally get another endoscopy for a couple weeks ago. Went in, was sedated, she was in for maybe 5 minutes, took three biopsies, and was done. I was like…ok. This last Friday I call back, and am told that there is “some” villous blunting but “no true atrophy” so it can’t be celiac disease so go on your way. I asked well what should I do about my diet. The response “do what you want but it may be wise to limit your gluten intake”. No kidding……. I wanted to cry. I just want a damn answer. I’m all but certain the genetic link is there. My mom has bipolar disorder, every female over the age of 35 has fibromyalgia, all have had digestive problems over the years, all have been small or sickly or allergic to everything, and now I have three lactose intolerant kids and the one who isnt lactose intolerant ( my eldest) has ADD/ADHD, epilepsy, severe asthma, and severe headaches. So I tell my eldest son’s doctor a couple weeks ago that I’ve been DX’ed with a preliminary gluten sensitivity, and they tell me that he doesn’t have GI symptoms so he doesn’t need to be tested. But he’s 4 ft 6 in and barely 70 lbs and is the smallest kid in the fifth grade at his school although he’s also one of the older fifth graders.
    Any insights??????? Because I’m about to explode.

    Reply
    1. 4.1

      Brianna

      I’m not a doctor, but I can speak from my family’s experience.
      I am the oldest of many siblings and about half of us, and both of my parents, have cut out gluten. None of us have been officialy diagnosed with celiac, but we are sick when we eat gluten and feel better when we don’t. We all have had different varying symptoms (only about half of us had any digestive symptoms.) I don’t care if I have celiac, a gluten intolerance, or something else. I just know I like feeling good.
      Be smart and do what you think is right. Cutting out gluten won’t hurt anything, it can only help.

      Reply
      1. 4.1.1

        Cari

        I agree. I just want the never-ending sluggishness, 24-hour D, and abdominal distension to go away. I’m talking to my kids (the older 2) about the different changes as well. My 11-yr-old gets it for sure, however my daughter…not so much. When I start trying to explain to her what I’m doing, she looks at me like I’ve got three heads. Then asks me, well do they make gluten free cookies???? Smh.

        Reply
        1. 4.1.1.1

          Brianna

          We are just lucky that there are so many more GF resources now. A decade ago, not so much. 2 decades, almost nothing. Yes there are cookies, and just about anything else you want.
          Good luck! I hope you and your family start feeling better.

          Reply
          1. 4.1.1.1.1

            Diane Humphrey

            You are so right, Brianna!
            When we started dealing with this in 1995, I had a very good friend who worked at a university was was able to print recipes and information for me. I don’t know what I would have done without her help. It is so much easier now. So many more resources and information! And much better labeling of grocery items.

            Reply
      2. 4.1.2

        middle schooler

        I am in middle school and have celiac. I have chosen to still eat gluten without my mother knowing. I have lately had very hurtful pains in my stomach and my stomach hurts when i eat anything now, GF or not. I dont want to eat GF because i feel like i wont fit in. Middle school can be rough and I finally feel like i’m not being teased or stabbed in the back. I dont like eating GF. I always have the same things. I dont have more that 7 meals. My school has more options that. My mom just yells at me for everything and i don’t know how to deal with it. So i dont eat GF and dont care because she doesn’t care how i feel and just judges everyone. It’s so dumb. I know how bad it can be later if i dont eat GF but whats the point of eating the same thing every day and never feeling full when i eat GF. And i can’t eat more because i have to limit it. Whats your opinion?

        Reply
    2. 4.2

      Peg Budny

      Cari, Stop eating Gluten immediately. I’m not a doctor but I can tell you that after having gone through 40+ years of feeling like garbage within one week of stopping gluten I was reborn. Every aching joint disappeared, my swollen legs disappeared, and I was happy and could really laugh for the fist time in I can’t tell you how many years. I have neuropathy in my feet from lack of B12, have iron deficiency, B12, deficiency and Vitamin D deficiency. I am overweight but still not absorbing nutrients. They may find something else going on, too, (I have a GI follow up in two weeks) but will never eat gluten again. I suspect my doctor will tell me I am not celiac but believe that will be because I have not eaten anything for over a year. Everything I have read points to gluten being a problem. I believe it has caused (or played hand in hand) with all the autoimmune symptoms I have; Hashimoto’s thyroiditis, pernicious anemia, etc. I could go on and on but the not eating gluten is the only thing that has made my intestinal, skin, mental, and physical symptoms disappear.
      As I said, one week off gluten was like a light switch went off. Unbelievable how much better I feel and how I feel better and better every day. I can actually do math and puzzles again and get the right answers. You have nothing to lose and everything to gain. I think your Atkins experience proves the point.
      I can tell you that most physician’s know nothing about this. I am lucky to have switched to a new gp who says she would never suggest I eat gluten again since I am finding myself so symptom free. It is nice to have a doctor believe you instead of accusing you of seeing someone else until you got what you wanted (thyroid med). I should have left that gp as soon as he said that because when I told him to do his own testing it confirmed the need for thyroid meds.
      I have found you need to trust yourself. Keep a food diary and record your symptoms.
      We kept my son off wheat when he was little and he was a happier child with no intestinal problems. We were told he did not have a wheat allergy but I did not listen cause I saw how it affected him. Now that he is in his twenties and pretty much on his own he eats what he wants but has anger and depression issues. Can’t make him see the light.
      Good luck to you. Keep in touch after you go gluten free again. PS watch for gluten in anything with malt in it and in soy sauce. Start reading and educating yourself and you will be a new woman!!

      Reply
      1. 4.2.1

        Lisa Gibson

        Peg,
        I just happened across your post. My mouth fell open. I’ve had huge swollen calves forever. I lost over 100# from gastric bypass but my legs are still swollen. I have other symptoms as well. I seriously have been going crazy wondering what’s up with my legs. I’m so glad I stumbled upon this site and your post.
        Lisa

        Reply
    3. 4.3

      Jennifer M

      Why do you need a doctor to tell you what you have…it’s obvious that you know from experience that changing your diet made all the difference….as for your child it’s pretty apparent from his symptoms he has it too…

      Reply
      1. 4.3.1

        Invernessity

        Thank you very much for saying this so bluntly. I know this to be true, but still question my own senses. In 2003, after a week in the hospital undergoing multiple tests, I was told that I had no medical illness and was “now a case for the Psychiatrists.” Even though my GI symptoms subsequently mitigated on a gluten free diet, and my autoimmune asthma, psoriasis and arthritis improved so much I no longer needed daily medication for these conditions, the words this doctor spoke still reverberate resoundingly in my brain. After ten years, I question whether I really have a gluten intolerance (even after subsequently being diagnosed with CD). Doctor’s words can be very powerful, and I have copied your post to read when I start to doubt myself again. Thank you once again.

        Reply
    4. 4.4

      Joy Landman

      You mentioned your oldest child’s health issues, as well as issues your other children face. I say this from my heart, as a mother who fought doctors for the first 8 years of my son’s life, INSIST that your children each be tested!! Even if the dr will not do it, go 100% gluten free for the entire family! My son was diagnosed with epilepsy, juvenile fibromyalgia, depression (they even hospitalized him for depression when he was six. SIX!!), chronic illnesses on top of each other, more than I can list; by the age of six his medical records filled two large boxes (TWO) and he had spent more time hospitalized for “unknown cause” than most adults do in a lifetime! He had his first seizure at 12 days old, and got worse every day. Twice we were told by doctors to call the family in because he was dying. He had even been tested for leukemia three times, and had his chromosomes tested for a disorder twice, mostly due to the fact that he suffered from “failure to thrive,” as well as other health problems. Finally, two months before his 8th birthday, a doctor took me seriously and diagnosed him with celiac. The dr told me, “I don’t know much about it except that he’s highly allergic to wheat in any form.” We immediately went 100% gluten free, including foods, drinks, soaps, school craft supplies, etc., and I hit the Internet doing research, quit my job to educate myself on how to save my son’s life. By the time his birthday rolled around two months later, he had color in his face and energy was quickly coming to him for the first time in his life. In the last two years (since the diagnosis) he has gained a whooping 29 pounds, making him a tall, almost-10 year old, weighing 75 lbs, still looks like a toothpick, but this time he is alive! All other diagnoses, INCLUDING EPILEPSY, have “cleared up.” Every other diagnoses has been removed, with the exception of epilepsy, because he still has seizures if he comes in contact with gluten.

      Reply
      1. 4.4.1

        Laura

        Aw! My heart is breaking for you having to see your son suffer so much. What a truly hard start to life your little man has had. I am sure you are overjoyed to see him come to life now. Now its time for you to sit back and watch your son thrive. xx

        Reply
    5. 4.5

      Jennifer

      Look up silent celiac disease. You can have it and your body is being damaged but you have no symptoms or you don’t have the typical stomach issues.

      Reply
    6. 4.6

      Andi

      I just stumbled upon this post. I am not an MD, but have been through the mill and have my own horror story before being diagnosed with CD, including being misdiagnosed with ulcerative colitis and having my gallbladder removed. I have had to learn about CD on my own since most physicians don’t know about it and even if they do, they are not able to spend the time that is needed to instruct their patients on how to navigate the GF lifestyle. One of my gastros told me that I would be better off joining a celiac support group than seeing a dietitian. Wise man. I took his advice, learned as much as I could about the disease and eating gluten-free, and eventually started my own support group. I hope that by now Cari has found answers to her and her children’s health issues, but just in case, and for anyone else out there who is struggling with health concerns and physicians who are ignorant or arrogant and blow you off, I will post some info which is hopefully helpful. You know your own body, be your own advocate. Don’t give up. Keep looking until you find a doctor who will listen and partner with you in your healthcare. I read a book called What’s Eating Your Child by Kelly Dorfman, a Nutritionist, that I found at the public library. It is also available on amazon: http://www.amazon.com/Whats-Eating-Your-Child-Connection/dp/0761161198/ref=sr_1_3?s=books&ie=UTF8&qid=1401138247&sr=1-3&keywords=kelly+dorfman. In it, there is a story about a little girl and her father who were both diagnosed bi-polar. With Kelly’s help, father and daughter were found to have celiac disease and after going GF, all symptoms of bi-polar were gone. If this happened to them, how many other people are walking around diagnosed with ADD, bipolar or schizophrenia who actually have celiac disease and have been misdiagnosed? Over the last few years I have had the opportunity to help many people who have been diagnosed with CD, or misdiagnosed and later were diagnosed with CD, and I want people to know that the tests for CD are NOT always accurate. If not enough biopsies are taken or if the disease is in the early stages, it might be missed. Sometimes the celiac blood panel is negative and the biopsy is positive. Some people’s test results are negative and 6 months later when re-tested the results are positive. I hear many stories from people who have been told by their physician to TRY going GF to see if they feel better and THEN come back to be tested. DUH! No one should eliminate gluten from their diet until after testing is completed. The other thing to consider is that some people have non-celiac gluten sensitivity, which will not show up on these tests. These people have the same unpleasant symptoms. While having a correct diagnosis is important for several reasons, the bottom line is if you feel better when not eating gluten, why would you want to go back to eating it?
      Please remember that CD is hereditary, so if one family member gets diagnosed, ALL family members should have the celiac blood panel EVEN IF THEY DO NOT EXHIBIT SYMPTOMS. They should be tested at least every 5 years, or sooner if symptoms develop. YOU NEED TO BE EATING GLUTEN TO GET ACCURATE TEST RESULTS. It is important to know that even though there are about 300 different symptoms, some people have none. That’s why it is important to get tested because the damage can be happening internally without you even knowing.
      The sooner you know, the sooner you can get the gluten out of your diet and the greater your chance of avoiding serious, sometimes fatal consequences.

      Reply
      1. 4.6.1

        B. Durbin

        I have a friend who cannot be diagnosed with celiac for the simple reason that you need to eat gluten for a while before the biopsy, and eating gluten puts her in the hospital. Sometimes it’s worthwhile to just know that if something sets you off, you’re better off avoiding it.

        Also note that “gluten-free” labels on popular products are not stringently regulated; if you’re sensitive to trace amounts, such as those picked up by creating the product in the same factory, you’re better off avoiding them entirely.

        Reply
  5. 5

    Brit

    These stories, as horrific as they are, are very helpful & inspiring to not give up! Thanks to all who have shared, being able to relate to alot of the symptoms, bad experiences is a great help. This fight is harder than hard, mentally & emotionally!

    Health & Happiness!!!

    Reply
  6. 6

    Bernie

    I owe my diagnosis to a lovely, helpful opthalmologist. He diagnosed me with iritis, and gently pressed me as to whether I had any other auto-immune disorders. I knew I had psoriasis, but it was a revelation when he asked about stomach pains, which I’d had diagnosed as IBS and anxiety. After several years of feeling increasingly unwell, this was my impetus to get properly diagnosed and start eating appropriately. I can’t say it’s been sunshine all the way, but I feel much better most of the time (and get to leave my house when *I* want to). I’m not so happy about the accompanying lactose intolerance, as this means I miss out on more things I used to love. But, hey, I’m back working, having fun, travelling, and that’s worth a cappuccino any day.

    Reply
  7. 7

    MLR

    NO horror story – just a blessing. No CELIAC diagnosis. Will decided because he had GERD for 40+ years – he would TRY going GF. I willingly made the house GF 3 years ago. Will felt better. HOWEVER, When I decided NOT to cheat – the pain I “thought” may have been Fibromyalgia – was almost gone. No more OR LESS – anti inflammatory meds, less Physical Therapy, no foggy brain, less arthritis, more energy, & thyroiditis gone. AND NO MORE CHEATING. Heidi Kelly wrote the BEST article – http://www.adventuresofaglutenfreemom.com/2011/10/ask-heidi-cheating-on-the-gluten-free-diet/ <3

    Reply
  8. 8

    Frustrated Gluten Intolerant College Girl

    Gluten Dude,

    If nothing else, I am writing just to vent.

    In January 2012, I managed to severely fracture my fibula, requiring emergency surgery and insertion of a metal plate and screws into my ankle. That’s where it all began. I never had intestinal issues. ever. Hardly ever got sick, except the yearly flu. Suddenly I felt sick all the time. At just 21 years old, I was worried.

    By the summer of 2012, I had severe abdominal cramping all the time. It was sometimes so bad that my face would turn ghastly white, and I would vomit. I would curl up in bed and just lie there. That’s when I saw my first doctor. I explained what was going on, and the doctor ordered an ultrasound to check out my gallbladder, as gallbladder issues run in the family. When my gallbladder was found to be normal, I was told nothing was wrong.

    I knew a few people who had celiac, so I asked student health at my university if they could do the blood work to test for the antibodies. They laughed at me and said, “celiac disease is rare. you don’t have it. we’re not going to test you”.

    I started to have some strange symptoms. This is when I sought out a doctor in the area who, having celiac disease herself, claims to be very thorough, and asked me to come in to explain my symptoms.

    My symptoms were as follows:

    I was experiencing extreme fatigue. I could barely get through a day of class without taking a nap. When I did take a nap, it was nearly impossible to get out of bed. I missed quite a few classes because of this. I tried adjusting my sleep schedule to allow 8 hours of sleep per night, and it didn’t help.

    I was also having trouble concentrating in class and having the motivation to study. I am now in my last year of undergrad, study health and human physiology and hoping to go to PA school in the near future (you better believe I want to help people battle gluten!). I would normally consider myself to be somewhat nerdy about my school work, as I am very passionate about physiology and the human body. Studying and paying attention in class have never been an issue for me. At the tail end of my undergraduate career, I can’t afford to be missing class because I’m exhausted, and on top of that be unable to pay attention!

    As a 21 year old college student, I do my fair share of social drinking, and have never been one to get a hangover. Now, all of a sudden, every time I would have a night of drinking beer, I would be woken up suddenly at 6 in the morning with severe abdominal cramps and vomiting. I would lay in bed for two days straight. I did not matter if I had 2 beers or 6. As someone who does not normally get hungover at all, this is not normal for me. My doctor said that it was. (Needless to say, I stopped drinking beer right away)

    Next, I explained that I was having frequent bloody noses. At least twice a week, my nose would bleed. Before that summer, I had never even had one bloody nose in my 21 years of life. My doctor told me that this was probably just because it was dry…. I live in the midwest, and our summers are actually quite humid… my living conditions had not changed, and I had never experienced it before, dry whether or not. Again, not normal for me.

    Next, I had explained that I had put on weight after having broken my ankle (which is normal), but months later, even with going to the gym, doing about 45 minutes of cardio 3 times a week, I wasn’t losing the weight. If anything I was gaining more weight. I am not new to working out, and I have seen my body respond positively to exercise in the past. Being only 21 years old, I should be able to lose the weight from surgery rather quickly.

    Finally, the digestive issues. The fun ones. I have been “regular” my whole life. Now, I was using the washroom upwards of 8 times per day. Definitely not normal for me. Not only that, but I would often have to run to the washroom… if you know what I mean. Without going into too much detail, it seems as though my food was not digesting properly. My doctor diagnosed me with “constipation”, and said that I should eat more fiber.

    My doctor was, however very thorough with her tests. She ordered full celiac antibody blood panel, blood work to test my liver enzymes, genetic testing for the celiac genes, blood work to test my iron levels, blood work to test my thyroid, and common allergen tests.

    However, the doctor never called me to share the results, nor did she request that I set up a follow up appointment.

    So, I called. I was told that my antibodies were within the normal ranges, so I definitely do not have celiac disease. I do however, have one of the celiac genes. My thyroid levels were normal. I have elevated billirubin levels, which isn’t something to be concerned about. I have an allergy to shellfish. (which is news to me, as shellfish was always in my diet and I never seemed to have a problem with it before.) The doctor said that the shellfish allergy was probably what was causing all of my troubles, and that I should be thankful I don’t have celiac.

    Gee, thanks.

    Yes, I am thankful to not have celiac, but can you really just rule it out that quickly? And what about my iron levels?

    Needless to say, I scheduled a follow up appointment, myself.

    Turns out the doctor neglected to tell me that I am extremely anemic, according to the bloodwork, so I was prescribed an iron supplement. She told me that I was healthy other than that.

    December 2012 rolls around and I am fed up with these symptoms that are affecting my school work and ability to go to class, not to mention my ability to feel good and to be a healthy 21 year old, so I scheduled blood work one more time.

    Again, the antibody test came back negative. The doctor told me that I could try and give up gluten, and see what happens.

    I gave up gluten for about two months, and it turned my world right side up again. I am still following a gluten free diet, and am feeling much, much better (despite the once in a while glutening). I have been losing the weight that I put on after surgery (finally), and my constantly bloated stomach finally doesn’t make me look pregnant. No more unexplained vomitting. No more “hangovers”. No more bloody noses. The bags under my eyes that I attributed to long hours of studying have gone away!

    From this, my doctor has ruled me as “gluten intolerant”, and I’m “definitely not celiac, like she is”. She says I should be happy about this, because since I’m “only gluten intolerant” I can cheat sometimes and it “won’t kill me”.

    Really?! I cannot explain my frustration. The fact that I have one of the genes means that I may have celiac, and have been getting false negatives. Even if I do not have celiac, gluten makes me feel awful, so why would I want to cheat?

    Don’t get me wrong, if in fact, I do not have celiac, I am glad to not have an autoimmune disease, I certainly wouldn’t wish to have it. However, gluten intolerance is not very studied, and the severity and long term repercussions are not known. I would just like to be taken seriously!

    I am still fatigued, and blood work shows that my iron levels are still extremely low. I accidentally get glutened sometimes, and feel awful. Since going off of gluten, when I have a reaction, it is much worse than it used to be.

    I emailed my doctor on numerous occasions with questions, seeking advice. I started using a new shampoo and broke out into a horrible, itchy rash on my neck and shoulders. Upon reading the label, I found that it contained gluten. When I switched to a bottle labeled “gluten free” the rash went away completely. I asked my doctor if this was just a coincidence, and she told me that with gluten intolerance it is possible to get a topical rash, even if you don’t ingest the gluten. Thanks for mentioning that before.

    Even prior to my other symptoms, I have always suffered from migraine headaches and dysmenhorrea, and take advil migraine and advil liquigels fairly regularly for relief. I read somewhere that these items may contain gluten. When I asked my doctor she said that they sure do. Again, thank you for letting me know.

    I am sick of not being taken seriously. Whether I am gluten intolerant, have celiac disease, or whatever else, I know this: my body does not like gluten, and it makes me very sick. Isn’t that enough? I still think I should be tested more for celiac, maybe by endoscopy, but am not looking forward to putting gluten into my body again, as my reaction to it seems to be getting more severe. Do you think its worth it? Should I just be happy with the fact that I know gluten is my problem? Has anyone else not been taken seriously by a doctor who knows celiac?

    Thanks for reading and putting up with my complaints!

    -Frustrated Gluten Intolerant College Girl

    Reply
    1. 8.1

      Diane Humphrey

      It sounds like even though you are now gluten free, an endoscopy might reveal past damage, and even villi in the healing stage so you would know more. If you can find a dr who will schedule a biopsy it would be good to do it now, rather than later. I didn’t have an endoscopy and would not go through eating gluten to try and get one now (GF for almost 14 years) but I did have lab tests that showed antibodies to gluten and that I have the genetic potential for celiac disease, so whether I have a diagnosis or not I am going to remain GF. I was much like you through my early adulthood and had no idea why I had symptoms like fatigue and bloating and so many cavities. Always borderline anemic even though I ate ‘right’. Just in the past few years I have finally been able to keep my iron levels up and am feeling like my body is appreciating the efforts I make to keep it healthy. ;)

      Reply
      1. 8.1.1

        Frustrated Gluten Intolerant College Girl

        Thank you for your response!

        I am still debating the endoscopy. I do believe it would be a good idea to have one, but I feel like if I subject myself to such a test, I should probably partake in the suggested one month of glutening myself. I am finishing up my last class of my undergraduate career, and am taking some time off before more schooling, so if I am going to have a month of glutening, it’s one of the best times for it! We’ll see if I have the guts to do it! (see what I did there? ha)

        I am also happy to say that I have managed to get my iron levels under control! I saw another doctor, and he increased my dosage of the iron supplement. For about three months I took that supplement, and when I was tested next, my iron levels were good- on the high side of healthy even! :)

        All in all, I am happy with how the gluten free lifestyle is treating me! :)

        Reply
    2. 8.2

      jrichardsmk

      I would say after what you have been through and learned thru experience, go with your “gut” literally and just stay away from gluten, even if you don’t have celiac, act as if you do, and don’t cheat, I have had the same experience myself, and it is better to just avoid it. I don’t think going back to eating it just to have more inconclusive tests will help you at all, just make you miserable, and even if they diag. Celiac, if you have read many of these horror stories they probably won’t give you much more help than you have already gotten – they will just tell you to avoid gluten. Well, you are doing that, do your own research online and in the latest books, call companies 800 numbers to check medications, and stay away form it.

      Good luck, it is hard, but worth it to feel normal again!

      Reply
      1. 8.2.1

        Frustrated Gluten Intolerant College Girl

        Thank you for your response!

        I do agree with you- like the old saying “if it ain’t broke, don’t fix it”- the gluten free diet is working, so I would hate to quit it! However, I do think that a diagnosis would help me be taken a bit more seriously by some of my doctors. I am still debating the one month of glutening and then the scope- but we will see!

        Reply
    3. 8.3

      Invernessity

      Please read the recent studies by Dr. Fasano. Non-Celiac Gluten Sensitivity is a bona-fide diagnosis now and has been since 2011. It is diagnosed in those who have negative CD tests and no other known GI illness, but who respond well to the gluten free diet. He estimates that 18 million Americans have this condition, many more than have true CD. Please trust your own instincts. Good luck to you.

      Reply
    4. 8.4

      Invernessity

      Dr. Fasano published a study in 2011 which identified Non-Celiac Gluten Sensitivity as a separate disease from CD. He estimates that there are 18 million Americans who suffer from this, many more than have true CD. Patients have similar symptoms to CD, but test negative for Celiac. If you google his name you can learn more about this. Good luck to you.

      Reply
    5. 8.5

      Rachel

      Wow. We’re about the same age and your symptoms sound a lot like mine. I was checked for gallbladder problems too before I was diagnosed. I was always “regular” until just a couple years ago. I didn’t have the nosebleeds, but I had the rash too, on my knee for several months. I didn’t mention it to my doctor because I didn’t know it was related. And I understand what you said about the beer. I could drink plenty of wine or even vodka and never had a hangover. But one beer and I’d wake up puking my guts out. For me, the biopsy gave me closure. But I totally understand why you don’t want to eat gluten again. Like you said, the reaction is much worse once you’ve been off it for a while. And besides, why should you have to put yourself through that just so you can prove something to someone else? It makes no sense. I’m really sorry for what you’re going through. Doctors need to realize that everyone is different and even one disease can show up differently in a lot people.

      Reply
    6. 8.6

      Crystal

      All I can reply to this is …same.

      My doctor told me today that these symptoms are anxiety and that there is no such thing as an allergy to gluten or wheat. And there are no specialists either.

      Clearly, my doctors an idiot.

      The problem is that I am getting severe reactions to airborne gluten now and this reaction is not taken lightly at my workplace due to the continuous bias surrounding this allergy.

      Like how can you get proof if your doctor refuses to listen and says it’s all in your head.

      There needs to be more advocates for this issue. People are getting very ill.

      It’s unfortunate for the both of us but I’m glad that I am not alone on this.

      Hope you are doing better. I know, for myself, it’s a constant struggle.

      Reply
  9. 9

    Elizabeth Wofford

    Hello! So my mom was the person who came across this Celiac disease the other day and showed it to me. I have been struggling with excessive weight gain, sever night terrors, bloating, ALOT of diarrhea for months now, sleeping issues, and several other symptoms that associate with Celiac disease and I am floored!!! Can I really have this disease? It would explain alot, because I’m even seeing a therapist for my night terrors because no one can explain them. Can someone explain more of this disease to me! I want to know more!

    Reply
    1. 9.1

      Chrissy

      I’m not a doctor. Technically, if you think you may have Celiac, you should get tested. It is a very dangerous disease that can be deadly if not treated properly.

      However,if your doctor refuses to test you for it or if you’re like me and can’t afford the $2,000 test (ah, ty again student loans), I would suggest giving it up strictly for a month and see what happens. If it helps, then continue living strictly gluten free. If it doesn’t, then keep researching for more answers.

      Here’s the list of side effects for Celiac and Non-Celiac Gluten Intolerance:

      http://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

      http://www.cureceliacdisease.org/living-with-celiac/guide/symptoms

      Reply
  10. 10

    Rikki B

    I was recently diagnosed, after what I would consider to be 8-10 years of misdiagnosis. I never had any GI symptoms, but I’ve been suffering primarily from severe fatigue.

    It started in high school. I lost a bunch of weight, and I was exhausted. I was tested for Lymphoma, and the test came back indeterminate. Since then my fatigue got worse. In fact, until this last week there hasn’t been a single day of my life where I felt awake. Every day was just a variation of how exhausted I was. All of my primary doctors ‘couldn’t find anything wrong with my blood tests’ and some chalked it up to stress or depression that I didn’t think I had.

    Eventually I started falling asleep at work. I was afraid to drive more than 15 minutes. I would come home from work and sleep until I went back to work. I was given a referral to have a sleep study. There I was diagnosed with “Idiopathic Hypersomnia” aka Idiopathic means ‘No one knows why’ and Hypersomnia means ‘you’re tired all the time’. Aka your brain has problems. Thanks guys. Their solution? PRESCRIPTION SPEED!! Yup. A 12 hour, time released speed pill. Joy. I felt so incredibly awful, I quit after 5 months. They kept telling me “Your body just needs time to adjust.” The worst part was I never felt awake. I just felt like I couldn’t close my eyes.

    I ended up dating someone who introduced me to the raw food diet. I was happily functioning off of raw fruits, veggies, nuts and seeds. However I was still consuming raw oats and some pre-made raw items that contained gluten, so I was still somewhat tired. I would tell my doctors that my diet made me better and I was always given a lecture on how I needed to be eating more grains.

    This year I finally had it and saw a naturopath. Our first visit was only an interview, and she knew I had Celiac. We tested for it, and its changed my life!!! Since then all of my acne (face and body) cleared up, I have more energy, and I AM AWAKE!!!!

    Reply
  11. 11

    Chrissy

    In looking back, I’m wondering exactly how long I’ve been gluten intolerant. As long as I can remember, I’ve been sick. I’ve never had a normal bowel movement or a day of not being bloated prior to going gluten free.

    On top of that, when I consume gluten I always end up with severe asthma attacks a few hours later (which usually lands me in the hospital hooked up to oxygen and or a breathing treatment). Over time, my asthma kept getting worse and I started to get new symptoms as well (headaches, all over body rashes, depressed mood swings). Doctors ran tests, couldn’t find any reason for the rashes and blamed the headaches/mood swings on depression. So they threw in more asthma meds, steroid cream for the rashes and a strong antidepressant for the mood swings. Ended up being a total of 15 medications daily. Nothing helped.

    Finally one night, my mom and I made the connection: all the ER visits happened after I ate large amounts of gluten (pasta, garlic bread, etc). Both set of doctors basically told me that it’s worth a shot, since all of the tests they gave me turned back negative.

    Tried giving it up strictly for a month and never looked back since. Now, I’ve been 7 months gluten free and all of my previous symptoms are gone. No more headaches, bloating, all over skin rashes are gone, I actually know what normal bowel movements feels like and best of all, no more asthma attacks. I’m working off of all of my meds, and currently down to just 4 medications.

    I really wish that the doctors would have suggested the gluten free diet earlier. All those ER visits as a kid could have been easily prevented. Worst of all, I could have avoided the pure hell that happens when coming off of an antidepressant (SNRI Discontinuation Syndrome). It’s horrible, and has left some negative long term effects on my body that I’m stuck with forever(random memory loss and severe headaches when stressed).

    Unfortunately, most doctors are quick to throw pills at a patient rather than look at the root of the problem. >.<

    Reply
  12. 12

    Linda

    It took at least 30 years for me to be diagnosed at age 35. I NEVER felt good my whole life. My parents told me I was just lazy and need to go play. I was never slight. I was always ravenous. I wasn’t fat, but I was a “healthy” looking child. I had abdominal pain and fatigue my whole life. In middle school the reflux started. By my senior year of high school I was living on tums. Depression and fatigue were my near constant companions. While pregnant at 21 with my first child I became unable to keep anything down. Being told I was just trying to keep thin and being told my lack of weight gain was my own fault. Later I was told by general practitioners that I was lazy, fat, and crazy in regard to my constant pain. I was exhausted and hurting all of the time, my reflux was never controlled. At about age 26 I started taking serious tumbles and forgetting things. I was sent to a neurologist to look for MS. I was dismissed repeatedly. At nearly 30 I was finally sent to a GI. I did have a biopsy done and I was treated for my reflux, it only got marginally better. My biopsy came back negative for celiac. At 32, my gal bladder finally came out (after repeated trips to the ER for attacks). The falls continued and the winter I was 34.5 I started having seizures. Horrible seizures that left me with great difficulty in speaking and finding my words, i couldn’t remember anything I read. I would read a page over and over and had no recollection of what I had read…not a good thing for someone in their second year of graduate school…after a second round of biopsies, my GI said, the tests aren’t good. You can have celiac and it wont show up. Do you have internet? [Yes.] Read a lot about how to be gluten free and then go completely gluten free. Then after at least a month, try to reintroduce. If you have problems then you have celiac. They call this gluten sensitive, but it is celiac.
    I had many of the neurological symptoms, many more than mentioned here. Pain, numbness, forgetfulness, confusion, seizures, fatigue…the list goes on. In hind sight is is clear to all of the doctors that this was the problem. I get no follow up care. The rheumatologist just tells me to go to a GI, the GI says I need to be monitored by a rheumatologist…I still have bouts of lichen planus, fatigues, muscles get tired faster than a normal person, trace contact makes me flare up. We only have each other as guides once diagnosed. We need more comprehensive literature from authoritative sources to hand our friends and family members. My friends and family just don’t get it. All of my kids have it. I see it looking at them and what they all have going on. My baby (11 yrs old) has autism and is the only one on the diet. We need more medical awareness.

    Reply
    1. 12.1

      Debora

      Have you thought about trying the Autoimmune Protocol diet described by Sarah Ballentyne? She also has lichen planus. Google it! :)

      Reply
  13. 13

    Mary Beth

    I’ve tried to post this already but I think it got lost in Cyber Space. In a nutshell, I’ve known there was something wrong with my child for several years. I kept telling the Pediatrician I had this feeling that my daughter had stopped growing or was growing very slowly. He assured me that I was petite and she was just taking after me. He acted as though I was worried about her being a short adult when in fact, I was worried she was not healthy. I should also add she had been exhibiting GI problems (trouble defecating without daily rounds of Miralax) and a host of behavioral problems including trouble sleeping, anxiety, major outbursts and possible ADHD. Again we were reassured that the potty problems were probably behavioral and that Miralax was a perfectly acceptable solution and could be used daily in a four year old.

    We took her (at age 5) to the Pediatric Psychologist only to have her be loosely diagnosed as “possibly somewhere on the Autistic Spectrum”. We were given parenting advice and told to enlist the help of an occupational therapist to help her work through her frustrations in an appropriate manner.

    At her 6 year old check-up the Pediatrician FINALLY agreed with me that her growth curve was not an actual curve and that she had, in fact, not been growing for some time. He sent me to get her hands x-rayed to see her growth plates. In the time it took between appointments to hear back from him on the results, I took to the Internet and researched ADHD and Autistic diets. I came across lots of information on gluten free diets and decided to try it. AFter one week on a gluten free diet my daughter could use the potty without any medication and it was not painful for the first time in years. She also seemed to be calmer and her checks seemed to have actual color in them.

    The growth plates showed she was a year behind schedule and that made the Pediatrician believe she was just immature. i shared with him my gluten free diet test and its results which he gave no credence to. i demanded a Celiac test. He tried to talk me out of it and told me about false positives. She tested positive and when his nurse called to give me the results she also went on and on about false positives and told me not to rely on this test.

    Fast forward a few weeks and we are at the Pediatric GI getting my daughter scoped. The GI says it was so obvious to him she had Celiac from the state of her intestines, tells me to put her on a gluten free diet and that he will see her in a year. Basically felt like he confirmed my fears and then sent me off with a sick child and no support system or medical assistance.

    That was almost two years ago. My daughter is now 8 1/2 and is GROWING!!! She is still petite and we still see some issues (lack of sleep, ADHD like symptoms and anxiety are the biggest concerns) but compared to where she was 2 years ago we will take it. We are far from being out of the woods with this child and I am constantly online trying to find holistic approaches to “fix” her and help her heal. But the biggest hurdle has been jumped. We have a starting place.

    And yes, I changed Pediatricians immediately after her diagnosis. Anyone who tells a mother she doesn’t know her child is INSANE! God gave Mothers an instinct to protect their children. Don’t you dare question that!

    Reply
    1. 13.1

      Laura

      Wow, Mary Beth. Our stories are so similar. I’ve been trying to figure out my daughter’s symptoms for years. I think our doctors (especially the pediatric GI) think I’m a little nuts.

      I was recently diagnosed with Celiac and I’m still having trouble getting the GI to do anything except prescribe harsh ulcer meds. Although a blood test was run for Celiac, it was negative, so we’re not getting anywhere with that. We saw an N.D. this week who is helping me to help my daughter get balanced enough to pull gluten from her diet (without my solicitation he feels that gluten is very likely the source of my daughter’s problems). Right now, she’s too limited (really limited…milk, dry cheerios, applesauce, goldfish crackers, and vegetarian sausage patties…and any junk she can get from people). The N.D. has her on a probiotic and flavored fish oil. Thankfully, she’s tolerating those so far. Usually I have a tough time with anything she has to ingest. The hope is to get her back in whack at least to the point where some of the suspected gluten-induced sensory issues (I had these, too) will calm down so that she can successfully work with an OT about making some new dietary introductions. Eventually, hopefully in just a few short months (or sooner??), we can feel confident about doing a gluten elimination diet for a few weeks to see if it helps. After how I felt before and after eliminating gluten, I’m pretty optimistic about it helping.

      I just don’t know where I’ll go from there. Getting people (my husband, my in-laws, school, etc.) to comply with a gluten-free diet for her is going to be rough without a diagnosis. My impression is that they all think I am a little eccentric and that I make this stuff up. I’m hoping that if we see a difference, maybe we can get an appointment at Mass General (we’re in CT) so that we can really pursue a diagnosis. I’m learning (from my own GI experience as well as my daughter’s pedi GI experience) that GI’s who don’t specialize in Celiac aren’t always knowledgeable about or open to Celiac.

      I hope your daughter is doing better. It’s inspiring to hear that she was doing much better at 8 1/2 when you posted a year ago.

      Reply
  14. 14

    alicia

    I can look back and pinpoint hundres of celiac symptoms right from birth. Since I grew up experiencing debilitating stomach aches, brain fog, dandruff, muscle fatigue and horrible bowls, I always thought everything was “normal”. I started seeing my gp regularly from january – december 2011 because of constant sinus infections and then for an horrible rash on my breats. Nothing was ever taken seriously and she only offered options other of antibiotics or topical creams. The root of the issue was never considered. Fortunately I saw a naturopath in December who immediately pinpointed the cause (and knew my family history). I’d say it took a full year of intense pain to finally have an answer but an entire 19 years of unnessesary suffering. I would almost guarentee that I wouldn’t have survived if I had continued to see my gp.

    Reply
  15. 15

    Lisa C

    I had been suffering from vertigo and mild fatigue for a few years when things started to get a lot worse about a year ago. I had been having loose stools for a few years also which I thought had been hanging around since my over active thyroid and Graves’ disease dx about 8 years earlier. My vertigo became very debilitating and I started having numbness, tingling, muscle weakness and extreme fatigue. Having been the type that rarely visited the dr. I suddenly found myself at the Dr every week. And each time I was made to feel like I was crazy. Saw an intern when my Dr. Wasn’t available and after explaining all the neurological and cognitive symptoms I was having and stated that the muscle twitching was so bad it was taking me hrs to fall asleep. She wanted to give me a prescription for sleeping pills. I said I didn’t want sleeping pills I wanted to know what was causing all my symptoms. This Dr. Got very angry, yelled at me, insisted I take the sleeping pill prescription, tapped her watch and told me I was out of time but I need to book another appt and address my anxiety. A few more months of seeing neurosurgeons ( my Dr. Thought I had a pinched nerve somewhere), neurologists, and an MRI I went back to my Dr. In tears and asked if maybe I was going crazy ( I figured the crazy person would be the last to know she’s crazy, right?) My Dr. Looked at me and very calmly said, “Lisa, I don’t think your crazy, but you need to accept the fact that sometimes you don’t get answers and you likely have a virus that needs to run it’s course.” I went home defeated, cried and decided that this was as good as it was gong to get. My husband got me an appt with a Dr. In a neighbouring town that had an great reputation. He first discovered I had a severe B12 deficiency which led to the celiac testing. My blood tests came back positive for Celiac but strangely enough, my biopsy was negative. I went completely gluten free after the biopsy and have been slowly getting better. Because of the negative biopsy they dx me as Non – Celiac gluten intolerance. The couple times I have been glutened I have had the exact same reaction: Severe Vertigo, numbness, tingling and muscle twitching. By the next morning, severe fatigue where I literally can’t stay awake and fall into deep coma-like 3 hr naps. Oh, and of course, loose stools. Between my new wonderful Dr. And a great naturopath ( who happens to have Celiac disease) I feel very optimistic and continue to improve.

    Reply
    1. 15.1

      Tori Johnson

      Severe fatigue. Coma-like naps. Me too! I suspect I am also sensitive to MSG. You?

      Reply
  16. 16

    Diane Humphrey

    Our 20-yr-old daughter was 2 when we began looking for answers for her health issues. It took multiple dr visits, including testing for cystic fibrosis, allergy testing and removal of foods from her diet (including wheat), and finally a biopsy, which made me relieved bc I had been doing my own research and suspected celiac disease and thought we’d finally get a diagnosis. The pediatric gastro dr at the state children’s hospital described the biopsy findings this way: Her villi were only partially flattened, so she couldn’t have celiac disease and besides it was very rare in children. Take her home and feed her fattening foods and she’ll gain weight. He encouraged milkshakes. Ignorant fool! I followed his instructions for another 3 months and finally removed gluten myself just before she turned 3. The change was immediate and when my visiting MIL provided a gluten challenge, I knew we had found the problem. When she entered 9th grade public school we had to have a diagnosis to get gf meals so I had her records sent to our local clinic where there is an NP who was diagnosed celiac as a child. She took one look at the biopsy results and said of course she has celiac disease.
    I removed gluten from my diet after the birth of my son almost 14 years ago and have never regretted it. I did have the lab tests from Entero Labs done before going gluten free, which showed a gluten sensitivity. Whether I have celiac disease or not I may never know, bc I’m not going to eat gluten to find out. ;) Accidentally got glutened last week and was so mad bc it was BBQ which shouldn’t have had to be questioned. (It was from a campus dining hall food provider, so figured they used something I shouldn’t have in the sauce.)

    Reply
  17. 17

    Jackie Altman

    In retrospect…I am sure my dad was a functioning celiac. His entire life was marked with chronic pain & gastrointestinal issues. In his last years, he was constantly anemic and hospitalized several times with Dx of “blockage” that was never found and worsened with hospital food but eased with liquid diets. MDs told him it must be a lactose intolerance or a parasite. He ultimately had open heart surgery and died a year later–still anemic, still bloated, still gassy.

    I have 2 granddaughters who are certified celiacs and over 50% of the rest of 2 generations who are “gluten intolerant”. If it wasn’t for the Dx of my granddaughters–the oldest a classic celiac appearance from the “failure to thrive” as an infant–the rest of us would still be suffering daily gastrointestinal, skin & joint problems and going broke on the pharmaceutical products like Tums, Gas X, Bean-O & Motrin.

    I credit my daughter—not any doctor or PA–with the wisdom to keep a food diary and the persistence to make EVERYTHING homemade because there wasn’t any gluten awareness or GF food items years ago.

    She was diagnosed as a toddler with “food allergies” after classic gluten symptoms and, as she grew up, she was able to recognize which foods hurt & avoided them herself! Her kids do this also & she listens! I wish more parents paid attention to kids when they say “my tummy doesn’t like this!” because the medical community refuses to listen!

    I rarely admit this—but I am glad that food & drink companies are jumping on the trendy & financially rewarding bandwagon of gluten free!!!!

    Reply
  18. 18

    Suzanne wade

    I was the sickly kid, always had tummy aches, always tired. Typical Midwestern diet, meat, potatoes, flour gravy, dumplings, etc. the older I got the more depressed I got, I was tired, bloated, ached all over! So sick of all the “scopes” I had done which never biopsied anything, just ruled out Chrohns disease (father had) and kept saying IBS. In my 20s a diagnosis for low thyroid seemed to help for a bit, my doctor even gave me uppers at one point for fatigue. The rheumatologist kept pushing pills on me, saying I had arthritis, this after so many tests for every other autoimmune disease he could think of. In my thirties fatigue took over my life. I would’ve lost my job if I didn’t have FMLA. I started having odd itchy rashes, and now came the tests for lupus and ms again! I began doing online research after being told that things would get worse and start on these new pills. It took a good couple months to start putting the pieces together, my parents are deceased but my sister remembered some of my childhood issues like throwing up a lot, having allergy shows, and how I was hospitalized several times before I was 5 cause I always was sickly. I called my PCP when I woke up with my rash and she got me into the dermatologist immediately for a biopsy. The derm said it was surely not related to gluten but did the skin biopsy. I got the call that it was DH and was told to quit eating bread! I then went to my GI doc who wouldn’t biopsy me for celiac, just do blood work. The tests came back positive and still he wouldn’t biopsy me so I left and never looked back. I’m convinced. My dad,s Crohn’s disease was actually gluten allergies, he suffered terrible bowel issues.
    On a GF diet my aches and pains disappeared and my energy is back! I have been gluttoned and when it happens I get
    stomach cramps nearly immediately and hives as well. On a side note I also suffered from an eating disorder that began in my teens, it was a difficult time, I equated not eating ANYTHING feeling so
    awesome, go figure.

    Reply
    1. 18.1

      Andi

      Dermatitis Herpetiformis (DH) IS a form of Celiac Disease and the treatment is strict adherence to a gluten-free diet. If diagnosed via a skin biopsy, an upper GI with small bowel biopsy is not needed, because you already know you have celiac disease if you have DH.
      Just another example of how doctors don’t know enough about this condition. If anyone suffers from a VERY itchy skin rash, find a dermatologist who knows about celiac disease and get a skin biopsy. If you are positive for DH, a form of CD, join a local support group or at least connect on line to get the help you need. An excellent book to read on Celiac Disease is: Celiac Disease: The Hidden Epidemic by Dr. Peter Green.

      Reply
  19. 19

    Amanda Mair

    Wow reading the stories above I really feel like one the ‘lucky’ ones… My hair started falling out on Christmas day at about the age 8 (about 1989). Off to the doctor the next day and told I had Luekemia and would be bald within a week! Nice… Recommended to have a hair cut so maybe shorter hair wouldn’t fall out as easy as my long hair…wtf??
    My memory is fairly sketchy, thank god, but I saw specialist after specialist, was treated for alopecia and severe eczema (including on the face), and on steroids for around 6 months at one stage. No one had a clue what was wrong with me. Finally saw a doctor who actually knew what coeliacs was, off I went for a biopsy and bang there it is. Sent to a dietician who also was a bit clueless so mum and I somehow navigated through. But then 6 months later another biopsy and wow i’m all better so back to a normal diet! I honestly don’t remember much about this time apart from the joy of bread and donuts lol! But Mum assures me it was hell… 6 months later another biopsy and back on the diet. Anther usuelss dietician, tried joing a ‘support group’ which lasted one meeting since the other members had even less of a clue then us. I clearly remeber one raving about how she couldn’t live without a Mars bar and we were like ah not Gluten Free!
    Flash forward 20 years and although its much easier to get good bread etc, people have been more understanding the last 10 years or so but now am faced with the problem of the ‘fad diet’… people are now brushing me off with the “i think it’s Gluten free”! argh…
    But i’m lucky in that my body has healed, I react quickly with an itchy throat now which saves me finding out 1/2 an hour later… I am rarley ‘glutened’ and if I am I do recover relatively quickly.
    Must apologise for my spelling, I’m in Australia and we spell celiac coeliac… ;)

    Reply
  20. 20

    Jace

    I said in another section that it took two years for my diagnosis. Technically, that isn’t true. For a while before my new wonderful doctor who is actually probably worthy of sainthood, I had one of the most useless doctors known to man. I had weight and digestive discomfort issues all my life, and so I was tested for diabetes routinely with always negative results. When I was twelve and my sister was fifteen, we had to go to the doctor for severe headache issues and a disturbing amount of exhaustion respectively. He told me to suck it up, and did some blood tests for my sister. My headaches got worse, and we had to get the blood test results for my sister so we booked a follow up. To explain the pain of my headaches, all I can say is that I have broken bones and had ovarian cysts burst and not cried. These headaches made me bawl my eyes out until I passed out from the pain and sheer exhaustion from trying to deal with day to day life. I was missing school more often than I was going because I couldn’t be there with the headaches and difficulty concentrating. I got told that I was lying for attention and that it would be best for me to get on with my life. After kicking my mother and I out of the room despite my fifteen year old sister’s protests, he told her she would never be able to have children and showed her the door. She left the office crying and we couldn’t calm her down for hours. It took her two days to be able to tell us what happened, at which point my mother was naturally mad as all Hell. She made one last appointment to get me checked once more and to get our physical medical records from the office with blood test results. Thankfully, he was sick and had a sub. I got sent for emergency MRIs, CTs, and everything you can possibly think of because the sub was really terrified that it was a tumor based on my descriptions (came back clean). She took one look at my sister’s thyroid numbers, and sent her to a specialist in a larger city to hopefully get her helped in time to save her ovaries (still hoping it works out despite how long it’s been, the damage done due to wait time because he wouldn’t treat her was astronomical and she may never be able to have kids). We went and saw the old doctor to get my test results (never went back to him for my sister, no surprises there) and I got told to, and I quote “Take advil, I guess. After a while you’ll develop a tolerance. Just take a little more and don’t worry about it. It isn’t a big deal.” We got our medical records, and got the Hell out of that office, never to return.

    My sister got put on heavy doses of TSH to try and get her thyroid to produce thyroxine, and she was put on some levothyroxine to make up for what her body lacked. Complete turnaround thanks to her specialist.

    For the next few years we searched for a doctor, and this was when I started to get really really sick all the time. I couldn’t stay off the toilet, to put it bluntly. I’d be throwing up, and tired, and sore, and no one could tell me why. It’s a miracle that I passed junior high school with how often I was absent. In the ninth grade, I started having panic attacks all the time. In high school, my mom started to take me to a therapist because she thought I was being bullied and just didn’t want to go to school as opposed to actually being sick. I can’t blame her, really. I was a different kind of kid, and people recognized that. Anyways…

    Thank God For That Therapist.

    He told me that I obviously had an anxiety disorder, but he didn’t think that that was the root of the problem, but rather another side effect because I was starting to become frightened of how my body reacted to everyday stimuli. He didn’t believe that the root of my physical illness was psychological and wanted me to see a physician before he’d make any official diagnosis that would involve me taking medications to correct the problem. He gave a recommendation for the doctor I have now who has been nothing but wonderful.

    I told her what was happening. First thing tested was thyroid, not only because of an extraordinary prominence in my genetics (every female in my family), but because I was retaining weight despite having what felt like the never ending flu from Hell, was easily confused, tired, and irate. My number did turn out to be low, but not low enough for what I was going through. I was put on medication and sent for additional testing because she was concerned. We tested my vitamin levels and she was horrified. I was retaining none of the vitamins I was taking in. I was put on prenatal vitamin supplements while we started other tests because she wanted to make sure at least a little got through.

    I wanted to lose weight really badly, so I started doing low carb diets. I started to feel better and just stopped following up with my GP until I got some of the worst pains in my abdomen (I was 16 and lazy, sorry guys). It turned out to be a bladder infection, and while I was healing I went off my low carb diet because they had always been my comfort food. I felt a little better, and then a lot worse really fast. I went back begging for something to be done. She thought they might be ovarian cysts, once again due to family history, so she booked me an ultrasound. We determined later that those initial pains were cysts based on what happened when they burst. My mother wanted me to go to the er because I was in so much pain I couldn’t breathe, sudden menstruation, dizziness, and weakness for a couple days afterwards. But when the cyst ruptured, the pains I had been feeling didn’t go away, so we followed through with the ultrasound. It came out clean.

    From this, we thought it may be a lipid intolerance because there was a history of it in my family, plus an examination of my stool proved that I wasn’t breaking down fats. I was put on a low fat diet. I was told that I may have to have my gallbladder removed in the future and that avoiding fats could help me avoid this. I wanted to keep my organs inside of me, so I followed her advice for a few months until I reached the furthest depth of my sickness, which was maybe being healthy enough to go to school one to four times a month and doing the rest via email with my teachers and at home when I could stay awake.

    Once you’re on any hormones, you have to have blood tests every three months or the doctors here will refuse to refill your prescriptions because it isn’t safe because the levels change frequently. During these tests, she’d check my vitamin levels as well because I was having such issues with them. I went back for a checkup and mentioned I wasn’t feeling any better really. She went through my results with me and told me that she wished she had better news, but that based on the lack of effectiveness of the treatments I was currently using, she had concluded that I was a celiac and that she wasn’t even going to bother doing a biopsy because there wasn’t any doubt in her mind, and it’d just be a ridiculously expensive test for no reason. (I’m in Canada, so the notion of paying for tests was confusing to me. Apparently we have to send these results to Florida and our government considers the test superfluous so healthcare doesn’t cover it.)

    She said that this was going to mean revolutionizing my life. I would not be allowed wheat, barley, rye, and that any of the oats that were sold in our relatively small Albertan community would not be a good idea for me because they inevitably would set me off. I was told that gluten free products were a waste of my money and was immediately put on a modified paleo diet based on previously diagnosed lactose intolerance, lipid intolerance, and several anaphylactic allergies including some of the agents used to bleach grains. She knew I took advil for my headaches, so she told me immediately that that was a product which contained gluten and had me taking aspirin instead. As a person raised primarily on pasta and ibuprofen, I was horrified, but she has seen me every six weeks like clockwork since I was diagnosed in November to make sure that everything is working for me.

    I am so thankful to have her, especially since the repercussions from my previous doctor are still manifesting. It was determined in January that because of the advil I had been told to take, my body actually had developed a chemical dependency. I was taking a lot more than the LD/50 daily to make the headaches wane, and she helped me through the detox which, even when I was at my sickest with the results of untreated celiacs, won out in terms of Hell. She helped me get on the correct headache medications which dealt with the fact that I have cluster headaches and not typical migraines and therefore cannot be treated with over the counter medications. (If you think getting diagnosed with celiacs changed your life, try that one. Google cluster headaches and you will find news reports of people committing suicide because of the pain, and testimonials of women claiming it is worse than childbirth. To have someone tell me that I was misdiagnosed and that I wasn’t crazy or lying to get attention and that it could be helped, actually made me cry in the doctor’s office.)

    And now that the amount medications I have taken in the past has officially cracked my stomach lining and succeeded in giving me the beginning of ulcers, she has proven herself wonderful again by getting me diagnosed within a matter of minutes of my appointment beginning and got me on something to stop the amount of acid entering my stomach while it heals, and also creating a diet plan with me, as opposed to for me, that allows me to still eat what I love without requiring as much stomach acid because it won’t be available to me for about six weeks now.

    I know it’s hard to imagine based on the collective experiences of the people on this site, but for every ten assholes out there with a medical degree, there’s one who really gives a shit and just wants to see you get better.

    Stay healthy everyone. :)

    Reply
    1. 20.1

      Suzanne

      Wow, your family went thru hell, thank you for sharing. I an having many new issues, most likely from so many years of damage tomy body waitingfor diagnosis. I. Have horrible dizziness which is being. Calledn cerebellar or gluten ataxia, some new “diagnosis”. Tomorrow i get results for additional allergys.
      Blessings to u!

      Reply
      1. 20.1.1

        Jace

        Oh God. Gluten Ataxia would be Hell. :/ I really hope they can get it sorted out. Good luck with your allergy tests!

        Reply
  21. 21

    shaunamom

    It took me 21 years to be diagnosed. I’ve had some poor doctors, like those who told my mother I wasn’t really ill, I was just trying to get out of school. Or the neurologist who tole me my vertigo, pain, and memory loss were really just anxiety and ‘if you stopped thinking about your health so much, you’d get better.’

    But the doctors who make me furious are the ones I DON’T have. When we had the second celiac turn up in our family, we started testing everyone, and my father, myself, my brother, and my daughter all have this. My son, who tested negative, turned out to be gluten sensitive.

    So we spread the word to our cousins, especially down one family line. The grandmother there has been chronically ill for years, with dozens of gastro problems, heart issues, exhaustion, and so on. One granddaughter had a tumor that you supposedly only see in people over 50 years of age. Two other granddsons have had chronic stomach pains and nausea for years.

    When they went to consult their doctor, they were told not to test for celiac disease. There was no way THEY could have celiac disease, because they weren’t skinny enough and didn’t have diarrhea. The chronic stomach pain was obviously just school anxiety.

    They trust this man. And so my family there has continued to get sicker and sicker and have never been tested. It just breaks my heart that the idiocy of this one doctor may be ruining so many people’s lives.

    Reply
  22. 22

    Celiac Disease Family

    Our 5-year old was recently diagnosed with celiac diseases (kudos to her pediatrician for initially suspecting it at such an early age), but I still look back to the initial procedure with her pediatric GI specialist and have to wonder, “How could this happen?”.

    In short, she was given wheat crackers 5-minutes after her endoscopy and right after her doctor ordered a gluten free diet. Dr. Enrique Hernandez could not have been a more pleasant doctor–and is probably very competent for other patients–but, to me, it seems like should be a very easy “business process” to control.

    They are so good at collecting money and chasing down patients for co-pays, couldn’t they apply the same focus and commitment to not serving their celiac patients (“paying customers”) wheat products.

    C’mon docs…. This is an easy one.

    Reply
  23. 23

    C

    My senior year of high school I was exhausted all the time and my arms hurt so badly I could barely write or hold a fork. I was diagnosed with carpal tunnel syndrome and a knee problem, given physical therapy, and sent on my way. I went off to college. I couldn’t sleep at night but could barely stay awake during the day. Carrying my books to class was painful. Student health doctors sent me to a neurologist; that neurologist sent me to another neurologist; I was sent to a THIRD neurologist, who finally said “this is ridiculous! I think you have fibromyalgia.” And I was sent to a rheumatologist. And I lived with fibromyalgia and chronic fatigue for SEVENTEEN YEARS. And then I went gluten free for my (breastfeeding) daughter. Miracle of miracles, I my fibromyalgia disappeared! I recently had a genetic test done. I have the genes for celiac, which I have passed on to two out of my three kids.

    Reply
  24. 24

    Invernessity

    Hello. I knew that the delay in my diagnosis was not the only case, but it is very encouraging to read about others who have experienced similar circumstances. In 2003, I went to the ER with digestive distress and severe pain for the sixth time in approximately nine months. I had previously been sent home without a definitive diagnosis after a few days as the pain subdued and I was rehydrated. Finally, a GI Doc told me he was going to admit me for a week and thoroughly conduct tests to determine the cause of my symptoms. I was very grateful and felt hopeful that I would finally learn what was wrong with me and how to treat it. On the fifth day of this admission, the doctor returned to me with the test results. Unfortunately, the news was very disappointing. He listed aloud the names of about 30 GI illnesses, preceded each time by: “You do not have ….” He concluded by calmly telling me that I was “now a case for the Psychiatrists.” I knew that this information was incorrect, but simply thanked him for his time and effort. I remained grateful to him, however, for restoring my hope that I could find a diagnosis, and I subsequently persevered in doing just that.

    Please do not let yourselves lose hope; if you persevere as I did, even in the most difficult of circumstances, you will find the answers. Remember that you are your best advocate; do not doubt yourself and you will eventually find someone who can help you.

    Reply
  25. 25

    Erica

    When I began having symptoms (hives, rashes, extreme facial swelling, upset stomach, fatigue, memory loss) I was misdiagnosed several times.
    First, I was told it was just from stress. Then another doctor diagnosed me for scabies. (Scabies!!?? REALLY?)
    Then I was told I had lupus.
    Wrong. All wrong.
    I eventually diagnosed myself through extensive research, various online sources, and dietary experiment. By this time I had lost over half my hair, 25 pounds (I was already thin) and most of my sanity.

    As ”Invernessity” said, you are your best advocate. I now trust no one better than my own body and what it tries to tell me.

    Reply
  26. 26

    Darlene

    Am 47 years old, diagnosed Celiac at 43 after “a life-time” of problems with “Bread”, starting age 8.
    Problems being able to maintain weight/learning/anxiety/fatigue/sleep/bladder and other minor issues.
    Had 1st child at 29, he “seemed to have same problems with Colic”, fatigue, learning/sleep
    Had 4 miscarriages
    Diagnosed “Hughes Syndrome”/assisted pregnancy
    2nd child had problems when introducing “weetbix”, me I lost weight rapidly after birth
    Tried to find out “what this problem was from doctors”
    Nobody seemed to have a clue, didn’t believe me
    Wrote a sheet of issues went to hospital, told I was “over anxious mother. Baby having “fever” and very irritable after bread.
    Was told bread doesn’t cause fever
    DHS was called in, children taken away
    Court case/ accused of having anorexia/bullemia/PND
    Told them they were WRONG!!!
    Won court case, children returned
    1st child diagnosed gluten intolerant at 8
    2nd child at 10mths (by homeopath)
    I was diagnosed (finally) by then weighed only 47kgs
    Broken up extended family (Schitzo) and forced sale of house

    Reply
  27. 27

    Annick

    When I was in University, I kept complaining to my doctor that I was suffering from extreme exhaustion. She told me I was simply doing too much and to cut my class load. By 22, I was near collapse. It was so bad I could barely get from my bed to the shower. I used to lie down on my bathroom floor to rest before and after taking my shower, in order to be able to walk back to bed. My doctor diagnosed me with the flu, sent me home, I got worse. She did some tests, suspected mono, suspected Lukemia. Six weeks and many tests later, no answers, and getting worse. My mother had a hematologist friend over for dinner and he took one look at me and said ‘pernicious anemia’, but come in to see me just to be sure. So we did, and sure enough, my B12 and iron were life threateningly low. I was put on daily injections of B12, and given iron supplements and sent home. When I asked him why, he said it was because I was a vegetarian (at the time).

    Fast forward ten years later, I’m pregnant witj my first child, and so sick, I’m nauseous 24/7. I am living on crackers and toast (doctors orders) nausea gets worse and worse. My beautiful son is born with extreme colic, screaming in pain 24/7. I research what to do (the pediatrician said to wait it out, that by 4-6 months he would probably be fine). My research suggests cutting gluten and dairy. Within 24 hours of my elimination diet, my son smiles for the first time, and the colic is gone. My PPD also ebbs away. I stay off gluten for the year I breastfeed. When I weaned him, I go back to my normal diet.

    Within the year, I keep going to my doctor with various ailments that keep getting worse, it gets so bad that she finally orders a myriad of tests: a dermatologist for my weird skin rash, a gastroenterologist for my GI issues, a blood test for my anemia, a therapist for my brain fog, a physiotherapist for my weird gait in the morning, en endocrinologist to check my thyroid… I was presenting with an enormous cluster of Celiac symptoms, and it never occurred for her to test. Even the gastroenterologist just had me do a barium test and told me that I looked fine. The dermatologist prescribed a cream, suggested I change detergents. The therapist wanted to talk about my childhood. My blood work came back normal.

    I thought I needed to self-adjust my B12 shots, so I googled ‘pernicious anemia’ and on page after page, it linked Celiac Disease as a cause of malabsorption. I was in some much intestinal pain that I was barely eating, and noticed that on days I didn’t eat anything I felt better. Food was becoming poison for me. I decide to stop eating gluten as a test, and within a month all my symptoms were gone.

    I am now ten years gluten-free and keep a gluten-free household. I went through dozens of specialists, did every test, and was never tested for Celiac. I refuse to do a gluten challenge to be diagnosed because I really don’t need it anymore. All I know is I eat gluten, my whole body falls apart. I don’t eat gluten and I am radiantly healthy. I eat gluten, my breastfeed baby screams and acts catatonic, I don’t eat gluten, he smiles, coos and grows.

    Every so often, we mess up and I get glutened, and my self-diagnosis gets confirmed. I wish doctors knew more about this disease, and were educated about nutrition. I’m sure if there was a Celiac drug, all doctors would be diagnosing it left right and center. It’s really sad.

    Reply
  28. 28

    Lauren

    I grew up normal. At about 15 I started having severe stomach pains, every once in a while. I never could finish my plate, my stomach would start hurting.

    In 2009 I started having severe acid reflux. Such bad “silent” reflux that I was aspirating stomach acid. Super gross. A ENT did multiple tests, and told me food allergies had nothing to do with reflux.

    Later that year, it was clear something was terribly wrong, with bouts of “stomach flus”. I took myself to a GI in Lee’s Summit, MO. They scheduled the upper GI and lower, a week later. After waking up, I was told I had bald small intestines, and they confirmed celiac’s disease with a blood test.

    I adjusted to the diet and started to feel better. The puzzle wasn’t complete until 2011 outbreak of hives, lead me to a gluten free beauty regimine as well. My skin is healthy, and I feel better at the age of 30 than I ever did in highschool or college.

    Reply
  29. 29

    Mindy

    I was Diagnosed two years ago, and have been diligently trying to get my family tested (I suspect my mom and brother both have it). When my cousin was complaining of health concerns that they couldn’t figure out, I suggested she asked her doctor for for the Celiac blood test just to see. Took me a year and a half of talking about it, and she finally agreed to ask her doctor. (SUCCESS!) I felt a little sense of accomplishment at that moment. That all changed when she told me what her doctor said. When she told her doctor that she wanted to be tested for celiac, because a family member has it, the doctor scoffed at her and said, ” I’m not testing you for for that… If you had that you would be pooping all the time, and you would be pale and stick thin because celiacs don’t eat.” Ummm, what? Wait… Seriously? I was so mad when she told me this! All my work down the drain because of one ignorant, arrogant SOB. I don’t have any classic symptoms… I don’t have intestinal issues, I eat… Probably too much… And WISH I skinny! I want to pose as a patient and go visit this man and tell him that I think I may have it and want a blood test. Then, when he tries to feed me that line, I can tell him that I actually have it and hand him a packet of information and tell him he is probably misdiagnosing many patients due to his ignorance. Ugh… I am still so mad, and the worst part is HE is my mother’s doctor as well, so even if I do convince her to ask for the test, she will likely get turned down as well….. So, so frustrating.

    Reply
    1. 29.1

      Andi

      Mindy,
      You are SO right! The little training doctors receive on celiac disease in med school includes a video that shows a skin and bones person with a distended abdomen. They are told that they will most likely NEVER see a patient who has celiac disease during their entire career as a medical professional. Interesting, considering 1 in every 133 people have CD and 85% don’t know it yet. In reality, about 50% of all those who are diagnosed with celiac disease today are OVERweight. Until doctors are required to stay updated on the latest medical information, we will unfortunately have to put up with their ignorance and be our own advocates. I’m okay with those who are human enough to admit they don’t know, but are willing to find out, or at least refer you to someone who does, or are willing to partner with you if you know more about it than they do, but those who lead us to believe that it is all in our heads need a slap alongside theirs.

      Reply
  30. 30

    Lisa M

    My whole life I had stomach issues. The doctor just told my mom it will go away when she gets older. When I was in 5th grade I was having the runs after everything I ate so the doctor took me off wheat and milk products, then had my boob sent to some lab to have it tested of course nothing was found so I go back on them. Then ringing in my ears starts and other ear issues. More test are done and nothing is found. When I was in my mid twenties all of it starts again. Go to urgent care they cannot find anything, but tells me to go my primary care on Monday to get a referral for a gastro doctor. So I do that the primary care doctor says o just have a milkshake to test for lactose intolerance… After I said I am getting sick no matter what I eat… I go home and tell my she calls a gastro doctor the next day I have an appointment get a colonscopy and upper GI just finds h.pyolri. next week was told I have IBS told to stay off gluten. About 3 weeks later get blood test done for everything comes out good. I was tested for Celiac didn’t even know it. I was negative by a blood test and never had a biopsy done. I have self diagnosed my self with celiac disease. Since being gluten free no stomach issues, no rashes likes I was getting or ear issues.. I changed primary care doctors. My new one said she would admitted me to the hospital and got every test ran. I will never go to a PAC ever again…

    Reply
  31. 31

    Rachel

    Ever since I could remember, I always struggled to gain weight and I was very short compared to most of the people in my family. My doctor chalked it up to the fact that I was very active in multiple sports. When I started menstruating, my periods were so heavy that it almost always meant missing a week of school every month. No matter what I did, I always woke up in the morning in a puddle of blood. Basically any clothing I wore during my period was ruined. Then when I was 15, I started a period that lasted an entire year. I literally bled every single day. I went to school maybe 2 or 3 days a week and when I did, I would be asleep within 5 minutes. I was tired all the time and suicidal. I started cutting myself and occasionally doing drugs. I went to the doctor and she thought I was exaggerating. She didn’t believe that I could be bleeding on a daily basis with no break. At first she just told me to give it time and that it would probably stop. Of course, it didn’t. The next step was for her to humiliate me in front of my mom by asking if I could be pregnant. I was a virgin, but she made me take a test anyway. Eventually the bleeding got so bad I could barely move. I was so weak and pale. I ended up in the hospital having a blood transfusion. The doctors in the ER suspected I had a fibroid tumor, but an ultrasound showed nothing wrong. So I was prescribed birth control and sent on my way. In 6 months I went from 100 lbs to 140. And I was only 5 feet tall. The birth control regulated my periods, and it took a couple years but I lost most of the weight I had put on. I also grew taller too, I’m now almost 21 and almost 5’5! Things were good for a while, until one Thanksgiving when I was 19, I wasn’t able to eat any of the foods I was looking forward to, because I was sick all day. From breakfast until bed time. And I realized I hadn’t felt good in a long time. I also would get a lot of pain in my upper back/shoulder area after eating. My doctor ordered an ultrasound to check for gallstones, but nothing showed up. She couldn’t really give me any answer. But I kept making appointments and telling her my symptoms. Eventually she said, “There’s nothing I can do for you. Would you like to see a specialist?” Would I!? Of course! The very first time I went to the specialist, he suspected celiac and wanted to do the biopsy 2 days later. But I didn’t have a ride, so I had to wait another week. I was so happy that this doctor was taking it seriously. He personally called me 2 days later with the results. I was happy that it was him and not just a nurse. It seemed like he actually cared. He had me set up a follow-up appointment and my mom and I came in and he explained it to us and gave us lists of different foods and stuff. Before I was diagnosed, I was really afraid. Because I pretty much knew that I had it. And I thought being diagnosed would ruin my life. But actually, it’s a lot better. Now that I have my own stock of my own food at home, I know that anything I make for myself is safe. No worries. Eating out sucks. I’ve been glutened at least twice so far. But I’ve learned that food is overrated. How it tastes doesn’t matter as much as how it makes you feel. I thought I would miss a lot of foods, but I really don’t (with the exception of a couple). Most of them were unhealthy anyway. I started eating a lot of fish and meats that I never ate before. I’m so much more eager to try new things now. Obviously it’s better not to have celiac. There’s so much more freedom. But I’m trying not to let it get me down.

    Reply
  32. 32

    Gill

    42 years ago I had my first biopsy … “negative”
    … and six months ago I finally got my diagnosis Dermatitis herpetiformis/Celiac Disease. You’re pretty desperate when besides all the other symptoms that accompany celiac disease, you have the “suicide rash” all over your body and you feel like your life is fast coming to an end. I had actually figured out for myself what I had by the time I saw the last specialist who diagnosed me. And my immediate reaction to the confirming words from the specialist’s lips … to burst into tears of relief.

    Like everyone else posting here it’s been a long, hellish journey. Look at all the unnecessary suffering that is being shared here!

    The many, many specialists I saw along the way just didn’t have the knowledge; comments like “I thought celiac disease was a wasting disease of childhood”, and being given a diagnosis of “idiopathic…..”, etc, etc. You’re made to feel like a hypochondriac but you know you are sick.

    Some of the autoimmune conditions I’ve developed along the way may never be reversed, but at least I know what I am dealing with and I can do everything in my power to heal, to educate myself and my family, and to regain my quality of life.

    After listening to many of the specialists on the recent Gluten Summit I’m understanding why. Until recently many of the tests used were inadequate. Mine were. It’s a complex issue and needs much more research. Over and over I am sharing information with my family doc and specialists who say “I didn’t know that ….”.

    I learned a lot here: https://theglutensummit.com and I’m eager to listen to the follow up later this week because these doctors “get it” and I’ve been helped tremendously by their advise. I share what I learn with my family doctor who is grateful and receptive. He makes up for all those along the way who have been dismissive or inappropriate.

    And here from communities like yours Gluten Dude who help us to support one another and to understand what we are dealing with. What a great gift you have given to us all.

    Reply
  33. 33

    Judith Reiter

    We all need to remember that the doctors work for us. We hire them, and we can fire them. I seldom go see a new doc unless I have interviewed them first: Make an appointment for a 15 minute consultation (which is really an interview). Interview the doc just like you would a prospective employee. Make sure they are willing to communicate with you, and in a way that doesn’t make you feel stupid or somehow second-class. Firing docs is easy, too… just make sure they know why you are leaving their practice and taking your hard-earned cash with you. They provide a service, and we should not be expected to put up with less than adequate performance of that service.

    Reply
  34. 34

    Julie Anderson

    Thank you for collecting stories like this.

    I was one of the many who was sick for almost a decade before getting an actual diagnosis. My favorite explanation of my symptoms is “Think of anything that has ever gone wrong in your digestive system. Those were my symptoms.” When the intake staff at not only your doctor’s office but the local emergency room recognizes you on sight, you’ve got a pretty major problem.

    Funny enough after years of regular emergency room visits and crazy homeopathic experimentation, alcohol was the key to my diagnosis. After a particularly severe stretch of acid reflux where I could hardly keep food down, among the various complaints, I made the offhand comment that I could drink plenty of wine in one night and be fine, but one beer and I would be sick as a dog. The doctor latched on to this immediately. It was then that we realized why I was getting so much worse so quickly. I was raised in a Sicilian household and when you are not well you eat pasta with butter, chicken broth with orzo or plain semolina bread. All of these things that I was eating to calm my system were in fact killing me. After that I went cold turkey from gluten and ate only plain fish/chicken, rice/potatoes, steamed veggies and fruit for months because I was too afraid to touch anything else. There was no nutrition education, no guidance and no support; only DON’T EAT GLUTEN. It was a severe learning curve for me and for my family, so we had to do all the research on our own and found a lot of misinformation. It wasn’t until almost 2 years in that I knew another person with Celiac and now I try to give guidance from my own experience to anyone that wants it.

    As for horror stories: The last time I glutened myself (about 2 years ago) I went to the local ER with uncontrollable vomiting, severe dehydration and could hardly stand. Since it was very early on a Sunday morning, the intake nurse decided that I was an irresponsible drunk with a nasty hangover and left me in the sitting area with my trash bin and a handful of napkins. She told the doctor as much in front of me. Luckily the doctor listened to me and knew how to deal with a glutening. Had she not, they would have given me fluids and told me to sleep it off.

    Reply
  35. 35

    MerLow

    I also had too many symptoms to mention for most of my life! When I was pregnant with my first born, my liver enzymes were sky high, which is a symptom of celiac disease. My Obstetrician did not know this and my labor was induced and my baby was taken earlier than he was ready for. I can handle anything, but after 23 hours of trying to deliver a baby that wasn’t ready to be born, then watching him suffer in the NICU was excruciating. Today he is a healthy vibrant 13 year old, but things sure would have been easier on the both of us had he come out on his own time.

    fyi… I am married to a Physician and he once told me “You couldn’t possibly have Celiac disease! It’s extremely rare!”, after I diagnosed myself on symptomfinder.com. When my blood test came back positive, I told him to “SUCK IT!” Don’t worry, we’re all good now! He is my biggest advocate and supporter and I am one lucky girl!

    Reply
  36. 36

    Lisa Mims

    I was undiagnosed for about seven years. It’s pretty awful. I lost the majority of my twenties to horrible insomnia, anemia, and a general brain fog.

    When I finally got diagnosed, it saved my life. I stopped being an odd shade of grey, I gained weight, and I was able to pass the Texas Bar, seven years after law school, after years of not touching a legal textbook.

    I’m just glad I got the diagnosis!!!

    Reply
  37. 37

    Trixie

    When I was a young child, I had constant migraines and ear infections. After tons of tests the pediatrician recommended us remove wheat and dairy. My ear infections went away but I still had migraines.Easing these two back in did not seem to make much difference so I was back eating regular food less than a year later. I fondly remember being violently ill after having a blended cake milkshake and again after having pizza but they seemed isolated and I was too young to really take things into my own hands. Migraines continued for years, often leading to vomiting and passing out from the lack of strength. Sleeping was always difficult and I was told many times I had growing pains making it hard to lift my arms and even sit up some days. Numb hands became a part of life. At one point, 2 years after leaving home, a doctor mentioned I might have endometriosis but it was inconclusive on ultrasound and insurance was not willing to cover any more testing. When I got pregnant with my daughter, I was sick the entire time. I lived on zofran and could still barely sit up without being sick, much less eat anything. To top it off, I had contractions from 31 weeks on and could not feel my hands at all (I had slight feeling before). I often felt like someone had a stick jammed into the back of my neck every time I moved. Bad vertigo has occasionally troubled me for years and I had to call into work a couple days since I could not drive or walk stairs safely. I assumed they would say it was another ear or sinus infection and send me on my way with amoxcillian. Instead, the only diagnosis was vertigo… really, I already knew that! Not satisfied, I took a friend’s recommendation to go to a chiropractor. That was when my life changed and he suggested trying an elimination diet. Even when wheat free when I was young, I was never fully gf so he suggested starting with gluten, dairy, and caffeine. Just a week later, I had more energy that I had ever had and could actually function without aching. A month later, I was in a car accident I was grateful to have walked away from. I have a feeling that if I had been eating gluten, my body would not have had the elasticity to survive the accident. Sore from the accident, I was not eating right and not reading labels and was in so much pain I woke up nearly in tears every day. At some point in my childhood, I also started dealing with a scabby scalp that went away after becoming gf. I have yet to get a celiac diagnosis (finally insured!) but will be getting tested in the next couple weeks and remaining gf either way.

    Reply
  38. 38

    Karen G. Saunders

    I have spent yrs. of going to many doctors and specialists. In Feb. 2013 I became extremely ill. It’s was quite a yr. I turned 60 yrs. old that month. I was unable to leave my home for weeks. I will try to make 60 yrs. of Celiac disease symptoms as short as possible., I begin life as a very colicky baby. It took 60 yrs. later to find out why….. I was diagnosed with Celiac Disease, Polymyalgia Rheumatica, and Schamberg’s Disease ( all auto immune diseases) in March and April of 2013. I was a very skinny, anemic little girl with stomach problems. Fast forward to teenage yrs. had severe constipation with bouts of bad diarrhea. Still having anemia , headaches and irregular monthly cycles and started a battle of weight gain at that time. At 25 finally became pregnant to only have a miscarriage in the 4th month. At age 27 I had a baby by C- section because she was breech. I feel very fortunate that I carried her full term, after knowing what I have learned. I was diagnosed with Hypothyroidism in my late 30’s and severe anemia by a new gynecologist. From that time to now these are some of the things I have dealt with that I now believe were from the Celiac Disease: beginning with a diseased gall bladder that stopped working, I had surgery in 1988, after that I started having chronic diarrhea; unbearable, itching skin rash for years ( 4 different dermatologists diagnosed lichen plantus and possible reaction to certain products…without doing skin biopsies)….15 yrs. later a punch biopsy done, Schamberg’s Disease; severe vertigo (so bad I bent over to pick up an ink pen and fell flat on my face and could not get up, vomiting and so sick for hours). Still have bouts of vertigo but never as bad as the first, I have had Yrs. of migraines, insomnia and scalp problems. Hair thinning, fingernails having horrible ridges, peeling in layers., numbness and tingling in my hands and feet, trouble concentrating and remembering…. in a brain fog, UTI infections, Vitamin B-12, iron, vit. D and adrenal deficiency. Malabsorption of vitamins from food. Muscle pain; Fatigue upon fatigue and gout. I am sure I have forgotten some but…… Why could all of these pieces not been put together…….or the dots connected, before 60 years had passed. So many of the drs. I have seen throughout my life never listened long enough to hear me. They were more concerned about getting me out to get another patient and another. I do realize until the last few yrs. a lot was not known about CD and some Drs. aren’t willing to admit they know very little. There is so much that they could learn if they would READ BOOKS AND THE INTERNET. I HAVE read on the internet and downloading many books to educate myself. I trust very few doctors now. It is up to me to research and improve my health. I recognize my symptoms. I have been Gluten Free 8 months now. I was told by one dr. To go Gluten free and all will be well. Since they can’t give us a prescription that is all some doctors think. It is not well. I bought packaged GF products at first, but have learned to be very careful because I have gotten very sick. I am learning each day. I have fired many drs. But have a great one now. I have some horror stories that it would take to long to tell….but never give up finding one that will listen….and willing to do the correct testing. My daughter, while she was living in Chile , had a friend who was Gluten Intolerant. She recognized I had similar symptoms. My sister after watching Dr. Oz had it figured out. I had to start with a new dr. I told him what my daughter and sister was thinking was my health problem and insisted on testing for Celiac Disease. If he had said no I would have left never to return.. I had to do something. I was getting sicker each day. Thankfully this Dr. listened. My husband and sister thought I would have died if I had kept going down that road. My father had many of the same symptoms. I remember him using Tums, Mylanta, and many other antacids, because he suffered after eating. I still have a long ways to go because of the damage that was done to my body from not being diagnosed sooner. I do think we have to educate ourselves and listen to our bodies. So thankful we have all these pages like The Gluten Dude, and all the posts from everyone dealing with this. Praying that all the young children will have much better educated Drs. to deal with in their lives than we have had recognizing Celiac D. Sorry this is so long.

    Reply
  39. 39

    Lorna

    Hospitalised, force fed and diagnosed with anorexia at fourteen.

    Constant illness, lethargy, weight loss and feeling cr*p until a diagnosis of IBS at 22.

    Had my first baby at 26, and my weight plummets to under six stone. Ten months after her birth I am finally diagnosed with coeliac! So 14 years from first noticing symptoms to diagnosis – but hey! It’s not that bad, I was born with a potentially fatal genetic disorder, but it took 30 years to get that diagnosis! ( and that was only because they recognised it in my daughter! )

    My faith in medical professionals is a little shaky to say the least :)

    L

    Reply
  40. 40

    Butch Whitehouse

    Hey,
    I wanted to add our story to the mix. Our son went from and active kid to one who was constantly nauseous and looked looked emaciated. The pediatrician had no clue and classified him as a “malingerer”. I had left most of this up to his mom but at that point made an appointment for him with my primary care Dr. to get another opinion. We were fortunate that one of my daughters college classmates was familiar with Celiacs and advised us to insist on the blood panel. We had to be demanding as the pediatrician was not familiar with the disease. When it came back positive all of our research and education began. I knew the medical profession was undereducated when we showed up my primary care Dr. and he was reading the same info I had printed out from the Celiac center at Columbia. Getting him meds for his nausea was another whole ordeal. Zofran was all that worked for him but it is customarily only prescribed for cancer patients. Bottom line is you must find care providers who are willing to go the distance to help you find a cure for whatever ails you. They are not all knowing and the best ones will tell you that. It scares me that my sons original pediatrician could be so uninformed about a disease that is so common. We had other issues with the way his samples were taken during the endoscopy and if it was even necessary or just another procedure we could be billed for.

    Reply
  41. 41

    Sherry Woods

    I have always had stomach issues as far back as a small child. I used to get respiratory illnesses and remember having allergies and dark circles under my eyes. I used to get spanked as a child for not eating everything in my plate, only to find out years later I was allergic to many foods.
    I was very athletic growing up, but had no idea until I was an adult with children that I had asthma, multiple diagnosed allergies and finally Celiac disease.
    I, like many others kept telling my ex husband that I never felt well, was always tired and thought I must have had anemia or thyroid disease. I was tested for everything. I became a nurse and knew something just didn’t feel right. My Dad had a heart attack and while in the hospital he developed a GI bleed. It was biopsied and he was given the diagnosis of Celiac Disease. I researched this new disease and while working as a nurse in surgery, had my blood drawn by another nurse, called my PCP and asked him to order a Celiac Panel blood test. My PCP thought I was crazy by this time. Then about 2 weeks later, he called to inform me that I was positive for Celiac Disease, in fact my tests came back what he called “off the charts” positive. Anyway, finally after about 40 years of not feeling well, I received a diagnosis for all my symptoms throughout the years.
    I have been eating GF since the diagnosis, but still never feel well. I know that I get contamination in many ways, from eating out, to foods made by friends and family that is supposed to be GF. I now am having constant pain in my abdomen, I have pain continuously, headaches, aching joints, and irritability. I think the constant inflammation affects our body on a daily basis. I am overweight now, primarily because I never feel well enough to exercise. My kids tell me to “just exercise and lose weight” and I will feel better. The problem is that I never feel good. I have a loving husband now that is very protective of me and questions anyone that serves us food and he lets them know that I get sick from any contamination.
    I still think the restaurants and the Celiac allergy information is not widespread, and contamination will not end until people are more educated. Thank you Gluten Dude for educating others on what Celiac Disease really is, and how it affects those of us afflicted.

    Reply
    1. 41.1

      Debora

      Hi! You should look into the autoimmune protocol as well! Celiac sufferers can experience cross-reactivity to other foods. It happened to me and it is very common. Google Sarah Ballentyne and AIP!

      Reply
  42. 42

    Regee

    When I was 18 I doubled over in pain slid down the wall at my work…Dr #1 said it must have been cyst bursting on your ovaries. Over a period of 26 years I would seek help just to be referred from one specialist to another, one MRI to the next CTscan…

    When I was in my 20’s I was in constant pain but was learning not to express my pain as family and friends were already “sick of hearing it”. Dr visit after Dr visit and Dr. after Dr….being told it was IBS or Anxiety, it is all in your head looks or the catch all answer “Must be female problems”.

    When I was in my 30’s my kids were used to my white knuckles gripping the steering wheel and tears on my face driving home, trying to get strength to get home, start dinner and do all the things mothers do.

    At work my co-workers knew when I was having an “attack” by the way I would get up from my desk and couldn’t walk straight up and down, I was slightly hunkered from pain and would try and function as best I could.

    I finally was convinced by Dr. # 5 that it was all female related and that if I had a hysterectomy my problems would be solved. At 33 I had a hysterectomy and within 6 weeks the symptoms returned and I had another “attack”. I wanted to die. The feeling that you had lost the ability to ever have another child just to stop the pain and it was wrong and for NOTHING nearly drove me insane. But I had conditioned myself over the years to not complain.

    By the time I was in my 40’s I was eaten up with several different auto immune diseases I asked Dr. #7 about Celiac, I told him the it ran in my family and I was curious. He told me I was too fat to be Celiac but he would humor me and do the blood test. Yes he was just that blunt and rude. However, he got the blood work back and said it was positive. That was enough for me. I started eating Gluten Free and was pain free for the first time in my life.

    Both of my daughters and also my 2 grandchildren are Celiac. The sad tale is that all the times I was consumed with my own pain, I didn’t notice it in my own kids. It is a heavy burden now looking back that I didn’t notice their symptoms. It is very hard not to have a heart filled with hate for the “Dr’s” for the loss of the ability to have more children (I always thought I would have 3) and the thousands and thousands of $$’s and time lost from not feeling well…

    “You never feel good” I used to hear all the time, until I quit saying it. Now I don’t hear that or say that anymore, unless I have cheated or something slips into my diet.

    It is an every single day struggle to eat right and sometimes it is a fight with the gluten eaters out there that do not understand and frankly do not care. But I now know how to feel good. It is now up to me.

    Reply
  43. 43

    CD

    Reading these stories just brings me to tears because I too am a victim of impatient, uneducated and arrogant doctors and a lifetime of suffering from misdiagnosis and flat out dismissal.

    When I was 15 years old I began to suffer from severe debilitating depression complete with suicidal thoughts, panic attacks, stomach pain, nausea, migraines, diareah alternating with constipation, joint and muscle pain, extreme fatigue, foggy brain, the works. All of my physical symptoms were dismissed due to the depression and so began years of psychiatrists, hospital visits, and prescription drugs to make the situation worse. With each new anti-depressant and tranquilizer came more symptoms and it became worse to the point I missed HS entirely and had to stay home and do homeschool in order to graduate. My family grew tired of me saying how sick and tired I was all of the time and I lost all of my friends.

    My adult years began and I was lucky to stay at a job for more than a few months to a year before the symptoms kept me from work entirely. I had a son and missed out on his entire young childhood years because I was sick and in bed from fatigue and depression. I always knew in my heart that something serious was wrong with me and not one of the hundreds of doctors I saw in those 20 years would take me seriously that something was causing this. I always thought, “how in the world do people live normal lives and feel good all the time, why can’t I feel good and be happy?”

    Finally when after numerous hospitalizations, ER visits, hundreds of doctor appointments, etc. I landed in the ER one last time from being bent over in crippling intestinal/stomach pain. The ER doctor sent me home with a script for Lortab and ordered me to see a GI specialist. When I went to see this GI doctor, he asked if I had ever heard of Celiac disease. I said, “seliah what”? No, I’d never heard of it, moreover, I had never heard of gluten either. He said he’d be willing to bet his last dollar that this was the cause of all my suffering. He did an intestinal biopsy which proved this diagnosis. He told me my intestines were the worst he had ever seen in 30 years of practicing medicine and that I needed to have my final meal and never touch gluten again for the rest of my life. I was diagnosed in Oct. 2008.

    My final gluten meal was a gyro and that was it. I did not feel better right away and part of the problem was suffering from withdrawal symptoms from all of the psych drugs I was taking. I began to get off one at a time until I was drug free. I wanted my body to heal and not be toxic anymore. I had listened to doctors tell me that I would never be able to live without anti-depressants and tranquilizers for the rest of my life. They were wrong. I am 100% drug free and feel amazing for the first time in my life.

    Even before the depression hit at age 15 I suffered from unexplainable physical pain, irritability, moodiness, anxiety, and on and on. My mother even recounts that I was a fussy baby and never felt well. No wonder. My entire diet consisted of Macaroni and Cheese, Peanut Butter Sandwiches, Pancakes, Twinkies, Top Ramen, Spaghetti, etc. And the last time I went to the hospital they told me to go home and eat Fiber One Cereal which is made of WHEAT! Gotta love a GI doctor who tells a Celiac to eat wheat cereal. This was in 2005, 3 years before I was diagnosed, but the ignorance is astonishing to say the least, and its no better now than it was then.

    If it had not been for that ONE GI doctor who understood what Celiac disease was, I would still be bedridden or worse, may not be here at all.

    I am thankful that I can begin my life now being healthy, but it too long and cost too much to get to this point. It didn’t have to be that way.

    Reply
  44. 44

    Oh My God

    It’s sickening to see every single [ignorant curse word deleted by GD] person on this website talk this much [ignorant curse word deleted by GD] about doctors. They probably didn’t like you because you were an annoying [ignorant curse word deleted by GD] who whined about every little thing, why would any doctor take half of you seriously? And plus, usually you can’t go to your PCP, especially with weird symptoms, and expect a proper diagnosis. And guess what… if you don’t like your GI, SWITCH TO ANOTHER. Jesus, from reading these comments it’s apparent that the stereotype of people with gluten allergies being insufferable idiots is true. I wish no doctor would treat you ungrateful [ignorant curse word deleted by GD], because you obviously are more competent in the field of medicine than people who’ve rigorously studied it more than 8 years… lol

    Reply
    1. 44.1

      Gluten Dude

      [ignorant curse word deleted by GD] you!!!!

      Reply
      1. 44.1.1

        Andi

        Oh my. Really? FYI: Have you considered getting tested for celiac disease since irritability can be one of the symptoms?
        I sincerely hope that you are able to find a physician who takes you seriously and doesn’t tell you it’s all in your head, even though, in your case, it may be.

        I personally pride myself on maintaining a positive attitude and have always treated my healthcare professionals with the respect they deserve. No matter what profession one may be engaged in, the important thing is having integrity and treating others the way you would like to be treated, which includes showing compassion and empathy for those who are suffering. I do not believe that telling people who are suffering with the numerous physical health issues described on this website that this is all in their head is an example of outstanding care and compassion from a medical professional. Doctors are human, they make mistakes, and we need to extend some grace to them. However, considering the number of people who are suffering needlessly with misdiagnosed CD due to the simple ignorance on the part of many healthcare professionals, one can’t help but be frustrated and hope that as time goes on the healthcare community will get on board.

        Remember, those who attend medical school…some are in the top of the class and some are in the bottom. Being intelligent does not necessarily mean one has common sense. Some of those in the bottom of the class or those who have no common sense might be physicians in your community. Let’s hope they move on…to another career…one for which they are better suited, one that does not affect our longevity.

        Reply
    2. 44.2

      Lisa M

      Really???? I have IBS also been told by many doctors its not real…I have changed doctors and now I have ones that listen and let me ask questions..Some of the doctors shouldn’t be doctors…

      Reply
    3. 44.3

      Celiac Teacher

      Is your a$$ jealous of the amount of $hit that comes out of your mouth?? Seriously??

      Here’s an idea: go drink a gallon of diesel and chase it with some antifreeze instead of berating people with an auto-immune disorder. Good gravy.

      Reply
    4. 44.4

      Sarah Fowler

      And I thought explosive diarrhea was annoying…

      Speaking for myself, I am well educated and am far from being an alarmist. After many months of watery diarrhea and uncharacteristic fatigue, I went to the doctor. My VALID issue with the first doctor is that she dismissed me without even considering Celiac. I suffered longer because she didn’t run a Celiac panel. I’d never heard of Celiac, so I didn’t even know to request it.

      Due to the delay in a diagnosis, I have developed cataracts, lost ten pounds off of an already scrawny frame, and didn’t have the level of energy that would have allowed me to teach all day and actually MOVE when I got home.

      Celiac is not a trendy, woe-is-me deal. It is a disease that undiagnosed and untreated can have devastating effects.

      By the way, the insightful and wise medical person who knew immediately to run a Celiac panel was a young CNP. Thank God for her.

      So I do have an issue with the doctor who wrote me off as a borderline anorexic. We talk a lot about fat-shaming but what about skinny-shaming?! You see, buster, YOUR prejudice is based on ignorance and a complete lack of compassion, just as my first doctor’s was.

      I teach my fourth graders about prejudice and we have had some terrific, mind-broadening discussions about it. Visit a local elementary school; you could benefit from the wisdom of the children.

      Reply
  45. 45

    Cari

    Oh My God…..thought about hurling insults, however I am not going to lower myself to your level of ad hominem attack. I will instead defend my stance of a year ago. I am very well aware of the educational rigors that MDs must have to practice medicine. I am a biochemistry major at the local four-year university, and I know more than my fair share of pre-med students, hell I even tutor some of them in general chemistry.That said, the celiac model that most medical schools are using is in fact outdated. Look around in some of the different chemical and biochemical primary literature, and you will find that there has been a lot of research into both celiac disease and gluten sensitivity, mostly looking into enzyme targets (hypothesized action to be similar to lactase enzyme activity, hypothesis has since been debunked) and the phenomenon known as Leaky Gut Syndrome that goes hand in hand with all forms of gluten sensitivity. The medical school research hasn’t caught up with the chemical research, and Big Pharma frankly could care less. I am not demonizing the entire medical community because I do recognize ans respect what they have learned, however I wish that the majority of MDs out here today would recognize celiac disease and gluten sensitivity as more than the failing-to-thrive toddler stereotype that runs rampant through that community. I now realize that gluten sensitivity is just one issue among many of mine. I have had some improvement with the diet, however I am finding that I am still flaring every time I have a stomach virus, and my physicians are looking into why. I now have a strange rash across my belly that a PA recognized as hidrodenitis suppurativa (yuck!), and he is hypothesizing a connection to both gluten and possible Crohns (hell I hope not, but my GERD, shooting stomach pains, inflammation, and 24-hr yellow D in the form of steatorrhea comes back after every stomach virus, which I still catch every one coming, and doesn’t resolve until I am put on predisone for inflammation manifests itself elsewhere on my body eg my joints). I hope. Oh My God, that what I have said causes you to rethink your position on all gluten sensitive individuals. We are all not the same. Yes I have had physician horror stories, but I have just as many family ones. It does not mean that I paint all of my family or the medical community with the same paintbrush. Just as you should not paint all gluten sensitive individuals with the same paintbrush. God bless you and have a wonderful rest of the day.

    Reply
  46. 46

    Sherrie

    I probably have had this since my early 20’s after the birth of my daughter. Fast forward to 6 years ago. Oh my daughter just turned 28 years old. Muscle spasms. My doctor told me I drank to much water. I was running 9 miles a day. I quit drinking so much water, he then ignored me, even through after the spasms both legs and back would spasm and then I would throw up. All I had to do was curl my toe to start them. Stomach aches, joint pain, my thyroid was going hyper hypo. Last December February I quit running. Breaking out everywhere on my head, I was treated for staph and was considered a carrier, I didn’t have staph. I asked my doctor to see a specialist. He was furious told me nothing was wrong with me. All the sudden my regular doctors started treating me differently. I finally figured out he black balled me. They treated me like a problem patient. The joint pain became so bad I couldn’t get out of bed in the morning. Finally I kept going to the ear specialist. Not him but his assistant suggested it was a allergy. Long story but the first allergist I saw wouldn’t test for it. He said everyone thinks they have celtics disease. Needless To say he told me I had no allergies to anything. I ended up in allergy shock from his tests. Yes I have pictures. Even through he told me I had a auto immune Disease. Second allergist wouldn’t touch me yet. I have to wait until March, my ear doctor suggested I cut out gluten, milk, and sugar. I did cut out gluten, milk and sugar. Here’s what happened.
    The brain fog is lifting. Yeah! The joint pain within one week has lifted totally! The knots in my hands…are clearing! My rash and knots of my head totally gone! My ears are better, not totally clear but the crazy breakouts and itching are almost gone! I want on vacation for a week and ate what I wanted…by the time I got home I was sick, sick, sick! I could barely stand it! I started over. I haven’t been diagnosed yet, I don’t know what to do except take it in my hands. I changed doctors, I am slowly changing all of them. Because I am not crazy but now at the affiliated clinic everything travels with me to each doctor. It is written that I am OCD and unstable. Because I cried and was frustrated. I even went to a mental health clinic as he suggested. Their conclusion was I was mentally healthy and frustrated. He even referred me to a new clinic and new doctors. I know I sound crazy writing this. It doesn’t sound possible, but honestly it did happen. The doctor I saw for years was a friend, I am not sure why he did it or why he treated me so horribly I have a idea I think there are two reasons one is I asked for another doctor. The other is personal between he and I. I can’t be certain but because of it my life has been miserable. And follows me everywhere.

    Reply
  47. 47

    Danielle

    This is the first time I’m really telling my story so bear with me. Ever since middle school I’ve suffered from stomach pain, GI issues, headaches, fluctuating weight, fatigue and acne. By the time I reached high school I was constantly complaining of stomach pain and/or nausea. My father suffered from similar troubles most of his life, but had been misdiagnosed over and over. He was injured on the job and had to have major back surgery when I was a teenager. It was a very scary time as his body just would not heal like it should and he was incredibly sick and weak. I had never seen my dad like that. He was finally referred to a specialist who happened to have personal experience with Celiac Disease. He was diagnosed, and he fully committed to being gluten free. We all supported him and eventually he healed and started feeling better. (I’m happy to say he is fairly healthy and doing good today!)

    Anyway, sometime after this, my parents finally took me to the doctor about my stomach troubles. When I saw the doctor I brought up that my father had been diagnosed with Celiac Disease and asked if he thought that I could possibly have it, too. He practically cut me off mid-sentence and told me, “No, that’s not what it is” and wouldn’t even test me. He did finally end up sending me to see a therapist due to the fact I was a “depressed teenager with a nervous stomach” and wanted to put me on birth control for my acne, which my parents refused to allow, lol. The therapist declared me “cured” of my depression after only a few visits. (Really, how are there such terrible doctors?)

    A few years later, my GI issues got worse to the point where a new doctor sent me to have a colonoscopy. I think I was 19 or 20. The diagnosis this time was, “probably IBS”. I was given a piece of paper with some common IBS triggers to avoid and sent on my way. Nothing changed, but I tried to live with it.

    In my early twenties I had a new doctor and I insisted she test me for Celiac Disease. She had me go to a lab for a blood test and later told me the result was negative. Long story short, I ended up seeing another doctor who thought maybe I had ulcers (I don’t) and I gave up on doctors helping me with my stomach, tired of paying for expensive tests and office visits.

    I am now 27 and I am currently recovering from a partial thyroidectomy due to the right side of my thyroid not functioning and being extremely enlarged due to several nodules that had formed (luckily benign). I have been given no explanation for how these nodules formed, but I have a theory of my own. I am thankful that my surgery went well and I already feel better having that huge lump gone from my neck, but my GI issues have still been awful. I still suffer from acne troubles, fatigue, and migraines. In speaking with my father he suggested that maybe I do have a gluten intolerance of some kind based on my symptoms and his experience. After talking to my dad and doing lots of my own research I decided to try going gluten free. I no longer feel I need a doctor to tell me to do this. I want to feel better and be as healthy as I can be. I’m a couple of years away from 30 and I have felt like crap most of my life! I don’t want to suffer until I am 40 like my dad did. I have had enough. Whether I actually have Celiac Disease or if I just have Non-Celiac Gluten Intolerance doesn’t matter to me if being gluten free means I no longer have to suffer in pain and embarrassment. So far, I feel a bit better already and I expect I will continue to feel better the longer I am gluten free. I have finally learned to trust what my own body is trying to tell me when it comes to my health, regardless of what doctors say. It is much too important to ignore.

    **If you read all of this, you’re the best.**

    Reply
  48. 48

    GinaDzee

    I have had a strange relationship with food my whole life. Any time I would get sick for no reason whatsoever, I always had an excuse. I was dehydrated. I shouldn’t have had that 2nd or 3rd cup of coffee. Maybe I shouldn’t have had that 2nd beer. But after I got extremely sick one July and couldn’t eat anything for an entire month, I figured that something was wrong. I started keeping a food diary to find out what was wrong.

    I was bloated, nauseated all the time, and I couldn’t stop belching. I finally decided to see a doctor, but my PCP didn’t have office hours on Fridays. I went to a medical clinic. They told me that I just had some kind of stomach virus and to go on the BRAT diet. Over the weekend, I still didn’t feel great (probably because of all the toast I was eating). I saw my PCP first thing Monday morning. She told me that I had acid reflux. When I told her that I was keeping a food diary, she said, “I don’t care what you’re eating. What you’re eating doesn’t matter.”

    I disagreed with her, so I decided to see a gastroenterologist. He was the first person to ask me what I thought was wrong. I said ulcers, celiac, and Crohn’s. He said that he disagreed with me, but would test for those things if it would make me feel better. Two days later, I get a call from my PCP’s office chastising me for getting a second opinion. They said that they refused to send my records to my new GI “unless it was actually necessary, since Dr. D has already told you what was wrong.” I could not believe that I was actually being harassed about getting a second opinion. I switched doctors immediately. I wish that I had laid into her on the phone that day.

    My new PCP is very supportive, and though she doesn’t know a lot about celiac disease she does the best that she can to help me.

    Reply
  49. 49

    Jenn

    I was always sick as a child. I had all the classic signs right down to the dark circles under my eyes. In third grade i can remember being asked if my parents hit me (horrified I said no. I grew up in a very loving home and at this point had never heard of child abuse). My stomach was always bloated and i was always tired. My pediatrician said I was a hypochondriac or just trying to get out of school. In high school i can remember being sent home for being pale and the dark circles for a week strait. The school nurse wouldn’t let me back to school without a doctors note. This was from the same dr that claimed I was faking these symptoms. Fast forward to 19 i saw an allergist who suggested I cut gluten out of my diet. Like so many of you no indicators of what I could still eat and what to avoid. I have several other food allergies which has been challenging but manageable. I didn’t like what little options I could find so I ignored it. Fast forward to 22. Having the opportunity to talk to my aunt (my dad was adopted I rarely see or hear from his biological family) she told me she has Celiacs and I should be tested. Went to a new doctor who listened and finally got the diagnosis. I hit the blogs, pinterest and any other site that has helped me learn to cook and stay gluten free. A few years later bloating is gone energy is up migraines are minimal and those random illnesses are gone. And to think one doctor thinking I was faking stopped me from feeling as great as I do today. It is a challenge as all of you know but knowing was the largest battled. You can’t help yourself if you don’t know something is wrong.

    Reply
  50. 50

    Bree

    Im 17 years old and around like 12 years old I started getting insomnia and horrible joint pain in my wrists, then in my knees, my doctor was horrible! He tested me for this and that and nothing would come up so he sent me home. He tried prescribing me pain pills! I’m a 12 year old girl! I am not taking pain pills! I literally had so much blood drawn all the time but nothing ever came up. One time he came into the room to look at me, looked at my knees and said “Yeah your left knee looks swollen…but I dont know what to do for you.” And that was my appointment. So we switched doctors, found out I was horribly low in Vitamin D, so I took Vitamin D pills n hoped that was the end of it. No it wasn’t, so my new doctor took x rays and a cat scan, I had tendonitis, they said I would grow out of it, well I didn’t, and now its in all of my joints, my writsts, knees, shoulders, elbows, hips, ankles…:/ And about a year ago I got very sick, I couldn’t hold anything down, I got horribly depressed, I dropped down to 90 pounds, it was horrible, I since then have gotten better, I’m like 110 pound now but my joint pain is still there and I have diarrhea all the time, I immediately have to go to the bathroom like 10 minutes after I eat! And I get nauseous all the time. Its horrible and I’ve seen so many doctors and none of them help me!:( I am 17 years old, i am not in school, had a few jobs but they were so hard on me…I feel like I’m in a 80 year olds body! I dont know what to do…anyone have any idea? I dont want to live the rest of my life like this!

    Reply
  51. 51

    simone

    For the past 7 years I have suffered from a variety of symptoms, which have baffled a variety of health care professionals, including my GP, gastroenterologist, rheumatologist, neurologist, endocrinologist, ENT, psychiatrist. I have been left to my own devices. My symptoms started with unrelenting headaches, bloated stomach, constipation, diarrhoea, joint pain, depression, anxiety, stinging muscle pain, spasms, dry mouth and lack of saliva, indigestion, constant belching, fever, weight gain, missing and extreme periods, twitching eyes. I have had a colonoscopy, endoscopy and other intrusive procedures, but no one has eliminated gluten intolerance/coeliac. It registered to me and my boyfriend that my legs were constantly swollen when I stayed at his house at the weekends. We noted that we tended to eat a lot of takeaways including and drink lager at these times. I literally had a lightbulb moment when the thought of gluten intolerance came to mind. I immediately eliminated gluten from my diet. The improvements after a couple of weeks were remarkable, and when I reintroduced gluten into my diet, I had a more or less instantaneous relapse. Amazing that the thousands of pounds the NHS have spent on my medical appointments and interventions were resolved by a little digging beyond the surface and common sense.

    Reply
  52. 52

    agonized

    these are crazy. i have a similar story to share but i cant sleep for 2+ nights right now and cant think straight and once again think i am going to die. :( gluten intolerance is absolute corporate contrived torture. eff you monsanto. when i get these cramps i become paralyzed with insomnia and i take everything… laxatives, safe foods, digestive teas, peppermint helps a bit, garlic cloves, activated charcoal, melatonin, l-ornithine… i get so overloaded on supplements that i become terrified ill never get over this flare up or ever sleep again. one day it will kill me i am sure of it :/ heh. what i have found lately is that constantly drinking alcohol (gluten free and organic) allows me to sleep and maintain stability. unfortunately every once in awhile if i am around friends or in a social atmosphere (like a club) i will overdo it and cause a flare up after the next hungover day. i want to die a lot of the time. i will post my doctor horror stories next time. good luck to you all. hope ur better than me right now :/

    Reply
    1. 52.1

      A

      I actually started drinking to cope with the pain, back before I was diagnosed and when I was told it was in my head.

      In desperation I would have several drinks a couple times a month. It was the only time my body would relax and I’d get a taste of normalcy. I wasn’t getting super drunk, just maintaining a buzz for several hours.

      This is dangerous for untreated celiacs, because we already tend to be low in b12. Drinking can push b12 even lower.

      Then I overdid it once and my friends took me to the ER.

      This was the last straw. It sapped all my b12. If course all this was undiagnosed at the time as stress.

      I ended up with nerve damage in my arms and legs and spinal cord. I couldn’t walk right or feel my limbs, neck, head, face, or skin for a year. I still feel like there is a later of thick paper between me and the world. I have tremors in my hands and face and struggle to control movements. I lost my appetite, my sense of taste and smell have been greatly diminished, and I have constant tinnitus. I lost my memory and didn’t know where I was most of the time.

      All of these things were developing before I started drinking, because undiagnosed celiac was pushing my b12 low. But the drinking made it worse.

      Reply
      1. 52.1.1

        Wendy T

        I had a severe B12 deficiency. It wasn’t found until I got sick with the flu so badly it wound me up at the clinic where a doctor who was trained in Thailand instead of the US actually took the time to dig for answers as to why this 30-something year old woman was getting so sick. He found the deficiency and then explained that my anemia (that doctors for years had told me was “normal for women to be anemic”) was related to the B12 deficiency. By the time I was diagnosed my memory was/is swiss cheese, my hands tremor on occasion, I have constant widespread nerve pain that feels like a sunburn all the time, migraines, etc… I can’t sit still, I’m not hyperactive but I fidget all the time. I think it’s to keep my hands from twitching. My ex refused to go to movie theaters with me because I was “too distracting”.
        I’ve been gluten free since 2002. My memory is getting better but there are some things I don’t think I’ll ever remember and I’m told that since it took so long to get a diagnosis, the damage is now permanent. I won’t get any better than I am now.
        Pretty depressing thought.

        Reply
        1. 52.1.1.1

          A

          Yes, yes, that is exactly what the b12 deficiency did to me! Did you get shots? The best protocol for neurological damage for b12 deficiency is shots every other day until no further improvement, but it’s HARD to get doctors to do that. I can only get it every week. My sensation comes back for about 3 hours. I may self inject, but my doctor will drop me if he finds out.

          There have been some pretty huge patient turnarounds in the history of b12 supplementation, so there may be hope. Are you familiar with Pernicious Anemia Society?

          I lost so much of my memory it’s like past me feels like someone who died. I don’t have a sense of continuity, of being the same soul on a journey through life. Because it’s mostly invisible to my family, they blame me for it.

          Reply
          1. 52.1.1.1.1

            Wendy T

            Once I was DXed with Pernicious Anemia (turns out that’s another disorder altogether), my insurance would approve one B12 shot a month. A MONTH. My first shot changed everything. I had energy. I could focus. I remembered things. By day 3 after getting the shot, I would crash again and had the rest of the month to deal with knowing I could be better. I was also in a terrible and abusive relationship at the time and wound up moving back to Arizona from DC… that’s when I started searching for a doctor who would give me the B12 more regularly. I met a Metabolic Psychiatrist who has done studies on B12 and Dementia (John Dommisse (now retired) he still has a website with some B12 research and data on it if you’re interested.) who did $1000 (out of pocket) worth of blood work that included vitamin levels, allergies, and Celiac. That’s when things started to get better. I haven’t had shots in years, but my labs are completely normal levels now. I do take my vitamins when I remember to. I read somewhere that mid-day is better than morning, and since I take my thyroid meds in the morning and can’t eat for 1/2 hour after, I just pack them with my lunch.
            I’ve been lucky that my family supports me. I will say that not all my relationships have. I’ve had boyfriends blame me for “intentionally” forgetting things. It was horrible. Fortunately, I’m now in a safe space to heal from the emotional abuse of others with relation to this part of our disability. The GI stuff people get, the neuro stuff they don’t.
            My cousin posted a photo of her and me and a local celebrity when I was a tween. I remember being at the studio and being upset about something. I don’t remember meeting him at all. Before I saw the picture, I didn’t even remember that much. It’s like swiss cheese in there, and it seems like only the really emotional moments are the ones I remember clearly.

            Reply
  53. 53

    Danae

    o If you or your family member has problem of allergy or asthma do check the suction power of vacuum as the more
    powerful the vacuum is, there are less chances of allergy in the house.
    Once you have completed this section of your page make sure that every thing on your web
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    If you have carpet in your home you will need a vacuum with a beater
    brush.

    Reply
  54. 54

    green coffee bean max

    Hi, i think that i saw you visited my site so i came to “return the favor”.I’m attempting to find things to improve my web site!I suppose its ok
    to use some of your ideas!!

    Reply
  55. 55

    Sherrie

    I read with interest about being told to quit whining about my health problem. I have heard this from my doctor, family and friends. When you know something is wrong…you just know it. Along with Celic diease I was diagnosed with lupus last week. Apparently it kicks in and out of remission. But it has been active for at least for several years. Imspcan still remember the day when it switched on for me. I am under going more tests and being sent to several specialist. The best thing that ever happened to me was changing from the doctor who called me a whiner and cry baby. He saved me! Had he not been a dick I would have kept going to him. He did me a favor and it probably saved my life.

    Reply
    1. 55.1

      CD

      It’s so infuriating when doctors and family dismiss your illness and call you crazy. I’m so happy that you finally found out what was wrong. It was the same situation for me. Doctors who dismiss you aren’t worth the time and money. They work for us, we don’t work for them. We decide who to hire and fire. :)

      Reply
  56. 56

    Jana

    I have been going to doctor’s for the past 4 years for many different things, like depression, anxiety, migraines, joint issues, stomach issues where I throw up almost daily, and I get a lot of viruses easily. I’m only fifteen, but I’ve seen my doctor so often that I’m on a first name basis with her. My sister has seen my doctor once compared to the 30+ times I’ve seen her. I’ve seen several specialists for all my issues (physical therapist, counselor, neurosurgeon, gastrointestinal doctors, etc.), however no medicine can help. I was almost hospitalized one day when my migraine got so bad I was laying in bed, but I needed to vomit. My mom walked in on me laying barely conscious covered in vomit and blood. We went to more and more doctors to find out what was wrong with me.

    Then my mom stumbled across this website when trying to find out what the heck is wrong with me. She talked to my doctor and asked if it would help. My doctor said it could, but it might not. They decided to put me on a gluten free diet to see if it would help. That was 4 months ago. I don’t get migraines as often (just around my menstruation period) and I’m not as tired. My joints don’t hurt as much, and overall I’m a lot healthier.

    My only issue is that about two weeks into the gluten free diet I got a rash on my legs. It went away, but no one knew what the heck it was about.

    Basically this website helped save my life.

    Reply
  57. 57

    Joebillie

    Loose undigested stool, pain, weakness, dizziness, severe fatigue, ulcers, oesteopenia, dental problems, weight loss, muscle twitching. Originally went to the doctors in 2009 and though it was nothing (symptoms weren’t that bad then). Went back and they thought i might have crohn’s. Was put on Azathioprine for crohn’s (risk of lymphoma). Didn’t work and am now being tested for two hard lumps on my lymph nodes as i may now have lymphoma. Now suspect to have celiac (after me recommending a test). Having the test tomorrow.. Gonna get me i know it :/

    Reply
  58. 58

    ps

    Had horrible joint pain and heart burn for months. I couldn’t lift a pitcher of water. I was tested for everything under the sun for months and months. Everything came back normal. My chiropractor told me from the very beginning to stop eating gluten, after 4 months I finally caved in an took his advice. After a month I was back to normal, it’s been 8 months now and I’m better than ever.

    Reply
  59. 59

    Valerie

    I feel so badly for all of you. I suspect my cd or gluten intolerance was silent for a long time. My sister and mother showed signs first and started to suspect cd. I didn’t think I had it until about 2 years ago. I started to have symptoms like bloating, stomach pain, diarrhea. I had miscarriages and trouble getting pregnant so I decided electively to go gf. Omg… the world of a difference. My mother and sister won’t stop eating gluten no matter what I say to them or how terrible they feel. My daughter is 3 and she seems to handle wheat fine, but because I didn’t show any strong symptoms for years, we’ve decided to have her go gf too. My son is due in two months and he will be gf as well. My husband isn’t afflicted but he’s fine losing the gluten too if I want to.

    The nicest thing had been learning how to make my own gf… everything. For a while I felt like I was always missing out, but I have great gf bread, cookie, cake, cinnamon roll, etc recipes now that are as good or better than the originals. This is easy and even if it didn’t make me feel bad to eat gluten, I would still be gf.

    I’m happy to supply good recipes and techniques for those looking to learn how to make gf baked things for themselves or family.

    Reply
  60. 60

    Rebecca

    I have been a Celiac for pretty much my entire life, but I wasn’t diagnosed until I was 28. As a child, I was plagued by sore joints, fatigue, and the plethora of stomach issues that comes along with the disease. I never really complained about it, because I thought it was normal. It got worse after puberty, so I finally went to see a doctor… and then another… and so on. They said I had everything from hormonal imbalances, IBS, fibromyalgia, etc.. Eventually, the consensus was that I was a hypochondriac and just needed to exercise and toughen up. I dealt for another 5 years or so until college, where it got really bad. I couldn’t go for more than 4 or 5 hours without taking a nap. My joints were so bad I could hardly move my hands, which doesn’t help my career as an artist. My immune system was so shot that I was pretty much constantly sick with a cold or flu. I was throwing up at least once a week on top of other stomach issues. And the bloating… oh god, the bloating.
    It wasn’t until I heard about one of my mom’s friends who has Celiac that things started to click. I did about ten minutes of research then headed to the doctor, who promptly agreed with me and I was diagnosed. After just a few weeks off gluten I started to feel amazing. I went down 5 pant sizes just from not being bloated, I had so much energy, and best of all I wasn’t getting sick. In fact, I haven’t thrown up since I went off gluten a year ago. Things are so much clearer on a mental level, too. I used to think I was just dumb because I couldn’t retain information well, and tended to forget things easily. Brain fog is a bitch.
    Unfortunately, the damage has been done. The enamel on my teeth is very worn. I have at least a dozen cavities, and several visible holes in my teeth. These are super painful, but I don’t have health insurance so I can’t get them fixed. That’s probably the worst part, knowing that if I could only get the cavity fixed now it wouldn’t turn into a root canal later. I also have severe joint damage, and damage to my stomach. My biggest fear is that I won’t be able to use my hands one day.
    I try not to be bitter. I’ve already wasted most of my life in a Celiac brain fog, so there’s absolutely no reason to dwell on it any more. All I can do is keep going forward. Knowing that I’ve already felt my physical worst is a big motivator. I tell anyone who has any sort of condition to research their butts off. In my experience, doctors are most useful if you come to them with your own knowledge. If they don’t believe you, get a new doctor. It’s not worth your health.

    Reply
    1. 60.1

      Gluten Dude

      “All I can do is keep going forward.” It’s the attitude you must have. Hang in there.

      Reply
  61. 61

    Misty newberry

    I got one for everyone i went to the doctor because i was starting to get a presure sore another bladder infection i am paralized from waist down was an auto accident any ways and have a folly cathater when i was waiting in the room for the doc who is male i was surprisedwhen a female comes in and starts asking me questions that my doctor usually asks i was thinking who the …… Is this. And she starts telling me her boyfreind is installing the new x ray machine and that she was a nurse or something nurses asistent but that when her uncle was really old she wasnt sure if it was her or because he was old but that she took his bladder meds away but he died and then says he was really old and was asking god to take him every day anyway i shoulda left then but im in a wheelchair and cant run i realized im not in the room with any ordinary weirdo she was special so i explaned i had a blader infection and the starting of a presure sore and needed some of these special bandaids i had been perscribed whith my first presure sore 5 yrs ago well she perscribed me some antibiotics sleeping pills and muscle spasm meds and i left room they have there own farmacy i guess the normal pharmist was out because that was a diff. One weird rite well i got my scripts and it was rite when they were closing rite then so i didnt look in the bag rite then till i got home there were only meds no bandaids or ointment then i was reading the bottles and notice that they all had way to many refills like 10 and 15 wow i know that isnt suposed to be rite i know u have to see doctor each time for refills i was just wondering how many people this has happened to its rediculous

    Reply
  62. 62

    Brianna

    I am 23 and have seen a grand total of 6 doctors for my issues. I have decided to go gluten free because I am fed up with doctor’s in general. My mother has celiac disease and I have every single symptom of it (and severe iron deficiency anemia) and I know that this is what I have. I guess I am completely on my own with my health now. Here have been my experiences with my doctors:

    1. When I was 13 I saw my first doctor for the stomach issues I was having. Gas, bloating, horrible stomach aches, diarrhea, heartburn, nausea. I liked this doctor, but he seemed clueless. First he thought I had IBS. Nothing he told me to do worked. Then he gave me medicine for my nausea and again, that didn’t help. Then he gave me Nexium for my heartburn and guess what, no relief. Next he had me go on a gluten free diet for what I think was a few weeks and then I had an endoscopy. Obviously if I’m gluten free my endoscopy is going to look normal, so that was useless. However, I know that I didn’t stick to the diet 100% because let’s face it, I was 13. So that entire experience was just a huge mess. I found out that I was slightly anemic, but he said that it wasn’t anything to be concerned about.

    2. Flash forward some years later and I went to my primary doctor for extreme fatigue, dizziness, nausea, shortness of breath, chest pain, irritability, etc… basically all the symptoms of anemia. I also still had my stomach troubles, but they This is when I found out that I was severely anemic. Now this lady was something else. After I told her my symptoms, she turned to my mom and said “Does Brianna have friends at school?”. WHAT?! I think she was implying that it was all in my head. Or that I was looking for attention. Needless to say I did not see her again!

    3. After a referral from my primary, I saw a hematologist. He was Indian and I could barely understand a word he was saying, but I tried. He had me taking iron pills 3x a day for 3 months, but that did nothing at all for my iron levels. So then he had me repeat that for another 3 months. Again nothing. When I suggested Celiac, he basically just dismissed the idea and didn’t even give it a thought. I stopped seeing him because I couldn’t understand him and he had me doing the same things over and over with no results. Isn’t that the definition of insanity?

    4. My next doctor I picked out after an extensive google search, because he had great reviews. He was another hematologist. I liked this guy but just like the others, he had no clue what was wrong. I had 2 iron infusions with him, and my levels immediately dropped afterwards. Imagine a 45 degree slope, and that’s what the charts of my iron levels looked like after both of the infusions. This is when I really began to suspect Celiac, as I was still having stomach problems years later, and had now developed severe anemia that didn’t respond to any kinds of treatment. This doctor said the same thing as the last one, that he definitely did not think it was Celiac, and there were no further questions on the subject. *Sigh*

    5. After moving to a new city a couple years later, I saw a new GI doctor. He also had great reviews though I don’t know how, because he was ridiculously arrogant. One of those doctors that has you all figured out before you even walk in the door. He had this annoying smirk on his face when I was telling him that I was sure I had Celiac, as I went on to explain why. He did a blood test for a bunch of different things, including a Celiac panel. That test was negative so he basically dismissed Celiac. Then I had to have a small bowel follow through. He said that that was normal, and ruled out Crohn’s, colitis, and diverticulitis (I think that was it). After that, I did a hydrogen breath test. Apparently I was positive for small intestinal bacterial overgrowth. However, when I was on the phone with the woman telling me that, I specifically asked if that could be the cause of my severe iron deficiency and she said no. UGH! I’ve read that that test can give a LOT of false positives and I believe that was the case for me, because the antibiotics I had to take for that did absolutely nothing for any of my symptoms. Surprise Surprise. By this point I was annoyed, broke, and hating this doctor’s attitude so I switched doctor’s, yet again.

    6. This brings me to my most recent doctor. A sweet old man, but just like the others, completely clueless as to what’s wrong with me. After reviewing my records with his assistant and talking with me, he told me that there was nothing that would indicate that I had Celiac. Oh, you mean except for every last one of my symptoms?! This doctor was obviously very scientific about the tests and wasn’t really listening to how I FEEL. However, he went straight for the endoscopy and colonoscopy back to back. I remember the entire procedure and during the endoscopy, I didn’t stop gagging once. TMI ALERT–I even pooped myself during it, that’s how hard I was gagging. I worry that since I did not tolerate the procedure well, he didn’t get enough samples or get far enough down or something, because apparently that came back negative for Celiac. He was supposed to give me the capsule endoscopy next, since the damage can be patchy and some people have damage a lot further down than what the scope can get to. However, nobody from the office will get back to me and I am tired of hounding them about it. Ridiculous.

    So here I am, left to figure out what’s wrong with my health on my own. I would have gone gluten free a long time ago, but I just needed that diagnosis from a doctor for my own peace of mind. Also, I feel that people who go gluten free without a diagnosis are not taken very seriously. At this point though, I know how I feel and I’m tired of it. I plan to eat gluten in a couple of months and see if I actually do get sick. I am praying that I do, only so that I will finally know what is wrong! And if anyone has any suggestions for me, including any other possible answers for my stomach problems and anemia, I am all ears!

    Reply
  63. 63

    Rose Mathews

    I have had a female dr for a year now, for the first few times I saw her she was pretty much ok and I had great hopes she was going to be better than the last one I had, it turns out she is not, the one thing I distinctively remember from the first visit was she said she had bought her three year old daughter an orchid to look after and if she looked after it she would be able to get the fish in a bowl she wanted I smiled at the thought because orchids are very difficult plants to keep alive and I said to her a more simple plant like a small Christmas cactus would be easier for her, she had said orchid but when I said Christmas cactus she quickly said that’s what it was a Christmas cactus, that’ve media telly struck a chord with me she was not going to be the ethical professional dr I so needed, she had lied on the first visit, all further visits and to this day she takes note of anything she thinks I do not like, or believe in, or respect, and lies to me, but worse now she is letting me know with confidence that she is lying and beginning to laugh at doing it and getting away with it, I am still a shy person at 73 and I am polite and respectful to drs especially, but getting to the point of telling her that I am fully aware that she is doing these things and her secretaries do all those things also, meds she has prescribed for me were for things other than what I needed, she has promised to give me a physical but never has, when one is booked it is always for 2 months time, I am diabetic, have had open heart surgery, highly blocked carotid arteries, have had TIAs , have osteo arthritus, now going for test for upper and lower abdomen problems and pains, stress makes everything worse and she knows it, gave me a letter to give to people dealing with important things for me such as banks that have bamboozled thousands of dollars from me from bad advice, her letter included sentences like,,,,please accommodate roses needs because any amount of stree makes her serious health problems worse,,,, how awful to write ,,,any amount,,, that leaves the door wide open for anybody to give me stress, I have never shown that letter to anyone, does she think me that stupid that I would show it, because I don’t always stand up for my self do not always know how to, have told her this hoping for understanding and advice about it, she is now doing and saying things to me every visit because she knows I either don’t like it, don’t answer just put up with it, at my age most of my friends have passed away, my husband did when I was 51 a few have moved away , the family that have moved near to me, there’s only one who understands the awful time I have on my own, I live with a nephew who is 42 he most willingly makes me tea some food if I don’t feel well, buys groceries and other things, but doesn’t seem to want or believe in the things I advice I give him, always from experience and astuteness and capabilities, he is making me feel redundant and most times does when he has other people interested in him, like dr and apps lately, when he’s feeling good, when he’s not feeling good he wants what he wants , does often have to ask I just do it, right now he is picking fur from the cat on the carpet, every day I ask him not to, he never takes any notic, there are many many things like that that he never takes any notice of, I am so fed up don’t seem to be able to understand why I get treated like I do from the people I deal with, makes no sense to me, I am a giving person, thought word and deed, putting other people before myself, got change, especially dr, she’s first and foremost on my list,

    Reply
  64. 64

    faith

    I saw 45 medical doctors. I was super sick , when I finally went to the Chinese medicine school here to see if they could figure out the cause the student there suggested elimination diet is the only full proof way to know if your allergic I
    That was the the answer, I’m amazed medical doctor only look at the outcome not the cause who crazy is thst? I recently found a great rice flour biscuit so I happy

    Reply
  65. 65

    Aimee Busche

    After more than a decade of seemingly unrelated health issues, I was finally tested and diagnosed by my dermatologist almost 3 years ago. Of all the physicians I’d seen over the years, who primarily seemed to think I was mentally ill and/or “doing something to make [myself] sick” as one flat out accused, it was the woman who was trying to figure out why I kept breaking out in little tiny blistery rashes who finally put it all together. My symptoms included: severe brain fog, fatigue, swollen joints (swollen enough that they had to be drained a couple of time a year), systemic inflammation and chronic elevated WBC, inability to sleep, hair loss (gawd), muscle weakness, ringing in my ears, heart palpitations at rest, high blood pressure, irritability and depression (because let’s face it, I felt like crap all the time). Some of the diagnoses I received were: primary depression (antidepressants they gave me made me sleep all the time); “viral arthritis” – wtf that is I’ll never understand; a “hormonal imbalance” treated with birth control pills (uhm, hello swollen boobs, midnight yurks, and crying jags over Hallmark Card commercials!); irritable bowel syndrome; and last but not least: bed bugs. BED BUGS. I kid you not!

    That last one cost me several thousand dollars – because the thought of bed bugs was horrifying and I literally ripped out every bit of carpeting and baseboards from my home, pitched everything I owned that could not be washed in scalding water and dried on high heat, including furniture / bed mattress & box springs, etc. I literally went around every inch of my place with a freakin’ magnifying glass and flashlight – every nook, cranny, wall crack, drawer join, screw hole, and outlet was inspected. I had my PC opened and cleaned, and inspected my clock radio, my stereo, TV – all the “odd” places that bed bugs can hide. Result? Nary a trace of bed bug, not even a single pin-head sized poop, was found. When I angrily called and told my doctor this – he blithely cut me off saying “I’m sure you must have missed something. Hire a professional service.” So I did that too – had the whole place steam cleaned from top to bottomus. I heaved sigh of exhausted relief and fell into my new bed (complete with sealed bed-bud prevention envelope and covered with newly scalded sheets), hoping this was at last “the cure”.

    Instead, a few days later, I broke out in massive clusters of tiny blisters on my shoulders, stomach, scalp, and back. Aaarrghh! Off to my derm… upon whom I unloaded the whole sordid story. She re-inspected my blisters very carefully and said “This isn’t bed bugs.” Then she asked me if I’d been feeling poorly overall and I told her the other things that had been going on – for years. I felt kind of guilty about “dumping” on her, because I think my other doctors had treated me like a “whiner” so much that I felt like I should apologize for being sick. After listening to my litany of woe, she asked the one thing no one ever had: what have you been eating lately? Well, because of the bed bug debacle, the answer was that I had been eating a fast food, particularly pasta and sandwiches – which I usually rarely ate because I know that fast food is really unhealthy. So then she took blood, skin biopsies – and ordered a battery of tests that my insurance company didn’t cover (like I gave a rip – to heck with Humana, I needed help!), and when the tests came back a week later, she told me my results were “consistent with celiac disease”, but added that I probably had a straight up allergy to “just about anything in the grass/grain family” – which includes wheat, spelt, barley, rye, corn, and oats. She gave me a “forbidden foods” list, including all the mysterious names that gluten masquerades by in processed foods, said “get clean for a couple of weeks, then test yourself eating things like rice; if it makes you feel bad – don’t eat it! She prescribed Dapsone, and advised me to get a biopsy of the bowel.

    I tried to get the bowel work done but was turned down because my HMO primary care physician, who says he doesn’t “believe in” gluten intolerance / wheat allergies, refuses to give me the referral. As if gluten intolerance were some kind of crackpot religion or fairy tale! The other pc doc (my only other choice with the new insurer) replied “oooh, how trendy” when I told her I had been diagnosed with grain allergies. She asked who had “diagnosed” it (the air-quotes were indicative in her tone), and when I told her it was my dermatologist, she rolled her eyes and said “stepping out of her specialty a tad, wasn’t she?” I gave up. It’s jerks like these two that leave people sick and in misery for so many years that their bodies become permanently damaged. Between condescending doctors and the care-denial tactics of my HMO, my move forward was with self-care and self-education.

    Going on 3 years later – I’m still struggling, but my life is better – a LOT better! My greatest challenge now is trying to eat clean in a dirty world, and to keep my body from going on red alert, because I do not have “medical back up” from my primary care physician. The thing about living with undiagnosed food allergies is that over time your immune system gets damaged – mine seems to overreact to everything, so my body seems chronically annoyed / inflamed. This has taken a permanent toll on my joints, digestive system, and vascular system. But I am carrying on with life, enjoying every good moment, and giving thanks to the universe for one smart dermatologist who cared enough to step outside of her specialty and help me.

    Thanks for listening. Maybe this will help someone else :)

    Reply
  66. 66

    Amy

    As a child I constantly had “hay fever”, sinus infections, bed wetting older than normal. I was always on antibiotics, yeast infections, kidney issues. It wasn’t until my teen years when a md was so mystified by my constant swelling and congestion that he did allergy skin test. Long story short I came back allergic to everything, most foods (citrus, dairy, a lot of meats, etc). I was taken off dairy and sent home w a list of what not to eat. No such thing as gluten or intolerance mentioned or possibly heard of at that point (23 years ago). I was a latch key kid of 14 years old that lived on cold cereal and frozen pizza. Downward spiral begin, major weight loss, depression, anxiety, grades slip (was straight ‘a’), sports slip (was headed for vball scholarship), food fear, peer pressure, anorexia, bulimia, passing out, etc. Sent to eating disorder clinic for a day as a threat, “eat more or we are leaving you here”. I felt better not eating than eating wrong thing. I was put on anti depressants and sent to therapy as my confidence fell in gutter. People still think I make it up I feel like. Anyway, I took matters into my own hands years ago as I moved toward more sun and organic food, and started researching foods, went grain, dairy, and white sugar/processed foods free. I lived in coastal cali where it was easy though. Felt great, but am food paranoid now. Live in small town Nebraska now as a single mom needing family support and cheaper place to live, wishing more people around here “bread basket of usa” would get it. My child is gluten sensitive too and school food and treats make me feel like I am a control freak and party buzz killer, but the symptoms later are all mine to deal with, grrrr. My family doesn’t care although I see symptoms in them as well, but they won’t part w their gluten ways. So I’m like a freak in my family and community. I’m a tree hugging hippie apparently. Everyone thinks it’s funny to sneak my kid gluten here, “aw poor kid, doesn’t get to eat as much junk food as other kids”. It’s like trying to get a gmo corn producer to see that “while yes, you do make a ton of money living off gmo corn production, you need to realize it’s hurting people and the soil and future generations”. They don’t seem to care, fills the empty gut/space now. Sort of like modern medicine, “put a bandaid on it” mentality. I also have my licensed practical nurse diploma. The short term high of bread. See what gluten Intolerance has done to me? I have to think about everything I put in my mouth so much that I feel like an alien! Lol:). I just work in a sustainable farm now, grass fed, no gluten. Not my dream job where I make money enough to support us or have insurance, but hey! We have safe food! Best wishes all.

    Reply
    1. 66.1

      CD

      Amy, you are amazing! You took the time to figure out what was making you sick. I was like you and was put on tons of anti-depressants, etc. before I was diagnosed with Celiac. My sister is gluten intolerant, but her tests were inconclusive so she may be Celiac too. It’s hard to be gluten free when your family isn’t understanding and stuck in their ways. Most people don’t want to hear about it. As you know, you can’t put a price on good health and no one has the right to take that away from you. Keep looking at how far you’ve come in gaining your health and stay the course. Wishing you all the happiness in the world!

      Reply
  67. 67

    Chio

    Well… More of the same… I lived in Mexico and allergies in my region were not even mention… I was diagnosed with RA when I was 13… my bones hurt a lot some days I could not even moved, Doctor’s told me I had colitis, ulcers in my stomach etc etc… when I was in college I started a diet to loose weight so bread was out of the picture and I started to feel better… but I never relate one thing to the other, my farts could kill a living thing in my room it was embarrasing. Now reading all your comments I realized that my memory loss and my depression my liver and thyroid issues were related to Celiac, 10 years ago I came to USA I babysat for a little one with celiac and her mom encourage me to get tested… when I told my doctor she even laugh, Oh my!! the struggles… Doctor finally send me get an endoscopy, it came out high so they send me to the nutritionist to only get a with a big list of what not to eat… until this point I still feel lost and all I can say is that I have learn about celiac from my friends and Blogs like this one … but from a health institution not a word…. Happy now I can dance and move freely!! I love and appreciate my heritage specially my Mexican food! a lot of variety with no gluten (Home made of course) I give thanks because I was able to try all yummy gluten food, but I sure missed eating out.
    Thank you Thank you for your support!

    Reply
  68. 68

    icha

    I’m a bit heartened by reading these comments. I am self-diagnosed sort-of. I had a negative endoscopy following three negative iga tests (only the last doctor, who was a gi rather than pcp, tested me for iga deficiency — apparently I am). He went straight from there to endoscopy, but I don’t think I was at the time eating enough gluten for it to register. I had been sent to doctors because I was getting glass-like stomach pains in my throat and stomach for months — starting in May and continuing until I saw the dr. in October. I was living on oatmeal, applesauce, and plain yogurt. Ironically, I actually gained about 10 lbs eating that.

    Previously I’d been tested because I went to Greece (I am a historian) twice in graduate school, and each time I lost ~20 lbs. I am small and didn’t have this amount to lose; the first time it put me under 100 lbs, the second time I had to come home early because I was about 85 lbs and lost the ability to regulate my body temperature. I remember sitting in 70-degree heat wearing a sweater and a coat and shivering. Everything was blue. Both times went to doctor, they told me I was anorexic and tried to have my parents put me a live-in eating disorders clinic. No one believed me when I told them I was eating 2 boxes of cereal a day. My parents had me move in with them and they could see that I was eating a full box of granola a day, sometimes two. Or 4 bags of soy crisps. They said I was bulmic (I was briefly during high school). But I wasn’t — I just didn’t gain any weight.

    I got an itchy rash all over the backs of my hands and my wrists, like poison ivy, that lasted for 8 months. Derm biopsied it and said it was ‘inflamed’. duh?! I asked if it could be an allergy, she said no. I asked if it could be gluten, and she said no — I did not have celiac disease because of negative endoscopy. I had blood blisters in my throat (confirmed by ENT, who saw them with some sort of scope). I asked him the same thing, and he said no – diagnosed with angina bullosa. When I googled it, they are blood blisters caused by dentures misfitting. I asked if this ever showed up IN SOMEONE’S THROAT, and he said not really, but what I had could not be due to food because it was too high in the GI tract. Still, he was the most helpful.

    GI sent me to an RD after negative endoscopy to do fodmaps because clearly I had ibs. FOdmaps failed – I can eat everything but gluten. After two years of being mostly gfree, I went fully free for two months and rechallenged with regular oatmeal. I used to eat it every day for breakfast. One bowl sent me to hospital with a fever of 106. RD said “well, you are very gluten sensitive. Would you like a referral to gi?” I said ‘I came from them…’

    At this point, I would like the closure of a diagnosis, but I know that I can’t go back to eating enough to make any of the testing positive. I have the bones of an 80-year-old and I haven’t gotten my period in almost 10 years, I figure I won’t again. The plus side of that is that my iron levels are normal, and with 3000-iu a day for a year, so are my vitamin d levels. I don’t tell people I have problems with gluten, except for my family, who have seen how much healthier I’ve gotten and are a-ok with gluten-free. I try to avoid meals with co-workers. If I do have to go out, I try to order gluten-free (luckily the menu is usually the same as the veg menu, so I can be subtle). I’ve gotten hives, I’ve gotten weepy, I’ve been exhausted. I’m pretty sure that I lost my last job after going to lunch with my boss before a performance review, being glutened by the bread they put on my salad (I took it off, but still), and then crying. But I’m still afraid to say I can’t have gluten; I’m so tired of being called and treated like I’m crazy.

    Reply
  69. 69

    Harmonie

    I haven’t eaten gluten in a very long time. Since I was probably 4, I started removing gluten from my diet simply because “It hurt my tummy”. I wouldn’t eat my sandwiches or my Oreos or even Pizza! Anyways. This year (I’m presently 18), I decided that I would finally get tested (seeing as I had multiple family members with Celiacs however not immediate family). My Blood test reading was negative although not completely negative. (I know…… what?) But I hadn’t been eating any gluten therefore I didn’t have much of a detection. My doctor recommended that I have an endoscopy to solve the problem. Many months later, my endoscopy date arrived and I guess one could say I was a little nervous. The nurses came in and asked me a bunch of questions, one of which was “What are you here for today?” and I stated “I’m here to be tested for Celiac disease” . Although I was nervous I was a little reassured. ( I had called the receptionist earlier and she said I would be out cold for the procedure so there would be no problems) Once I got into the room, The gastroenterologist introduced himself and then began to ask me questions. One question was “How long have you been avoiding gluten?” and I told him “Well, since I was probably 4 years old”. He then proceeded to explain to me that I have probably created my OWN intolerance to gluten if I simply eliminated it from my diet. (WHAT kind of CHILD willingly WANTS to avoid PIZZA?? Not me! Was he freaking serious?) Anyways, then I got the endoscopy and I was wide awake for it, I could hear them talking, I could feel the tube. I then started gagging on it and got pretty freaked out and tried to move away (Seeing I was not expecting to feel this at all, let alone be conscious) and I was vigorously moved back in place and told not to move again. After the procedure was finally over, I was pretty mad and upset that I was lied to. Eventually the gastroenterologist came in to see me in my bed and he asked me how the procedure went, he then asked me what my level of comfort was during the procedure. I told him that I was upset and that it did hurt at some points. He just stared at me and filled in his chart. Before he left, he promptly said “Oh. sorry” and walked away! He didn’t care at all! He left his charts on a table next to my bed so I looked at them. It was a survey that asked on a scale of 1-10 how uncomfortable the patient was, 1 being no discomfort and 10 being intolerable. He had put a 0. EVEN THOUGH I had just told him it was very uncomfortable and that I was gagging during it. I couldn’t believe that he lied on his survey so that he wouldn’t look bad….. The nurses came back to my bed shortly after and told me they would be bringing cheese and crackers. I just looked at her, and told her ” Well… No? You just asked me why I was getting an endoscopy and I told you it was for celiacs and you’re going to give me crackers?” She answered with “well, Your procedure is over now, so you might as well eat it.” I can’t believe the ignorance of some nurses…. How do they not understand that I can’t just eat it for fun? Anyways… That’s my little bit of frustration. Anyways. Long story short, I did get my results and I do Have Celiac disease. I was not “Creating my own intolerance”

    Reply
  70. 70

    Harmonie

    I haven’t eaten gluten in a very long time. Since I was probably 4, I started removing gluten from my diet simply because “It hurt my tummy”. I wouldn’t eat my sandwiches or my Oreos or even Pizza! Anyways. This year (I’m presently 18), I decided that I would finally get tested (seeing as I had multiple family members with Celiacs however not immediate family). My Blood test reading was negative although not completely negative. (I know…… what?) But I hadn’t been eating any gluten therefore I didn’t have much of a detection. My doctor recommended that I have an endoscopy to solve the problem. Many months later, my endoscopy date arrived and I guess one could say I was a little nervous. The nurses came in and asked me a bunch of questions, one of which was “What are you here for today?” and I stated “I’m here to be tested for Celiac disease” . Although I was nervous I was a little reassured. ( I had called the receptionist earlier and she said I would be out cold for the procedure so there would be no problems) Once I got into the room, The gastroenterologist introduced himself and then began to ask me questions. One question was “How long have you been avoiding gluten?” and I told him “Well, since I was probably 4 years old”. He then proceeded to explain to me that I have probably created my OWN intolerance to gluten if I simply eliminated it from my diet. (WHAT kind of CHILD willingly WANTS to avoid PIZZA?? Not me! Was he freaking serious?) Anyways, then I got the endoscopy and I was wide awake for it, I could hear them talking, I could feel the tube. I then started gagging on it and got pretty freaked out and tried to move away (Seeing I was not expecting to feel this at all, let alone be conscious) and I was vigorously moved back in place and told not to move again. After the procedure was finally over, I was pretty mad and upset that I was lied to. Eventually the gastroenterologist came in to see me in my bed and he asked me how the procedure went, he then asked me what my level of comfort was during the procedure. I told him that I was upset and that it did hurt at some points. He just stared at me and filled in his chart. Before he left, he promptly said “Oh. sorry” and walked away! He didn’t care at all! He left his charts on a table next to my bed so I looked at them. It was a survey that asked on a scale of 1-10 how uncomfortable the patient was, 1 being no discomfort and 10 being intolerable. He had put a 0. EVEN THOUGH I had just told him it was very uncomfortable and that I was gagging during it. I couldn’t believe that he lied on his survey so that he wouldn’t look bad….. The nurses came back to my bed shortly after and told me they would be bringing cheese and crackers. I just looked at her, and told her ” Well… No? You just asked me why I was getting an endoscopy and I told you it was for celiacs and you’re going to give me crackers?” She answered with “well, Your procedure is over now, so you might as well eat it.” I can’t believe the ignorance of some nurses…. How do they not understand that I can’t just eat it for fun? Anyways… That’s my little bit of frustration. Anyways. Long story short, I did get my results and I do Have Celiac disease. I was not “Creating my own intolerance” So yeah…..

    Reply
  71. 71

    Sarah Fowler

    After losing ten pounds from my already scrawny, boyish frame, developing “pitting edema” due to outrageously low albumin (protein), being transformed from an energetic, in-perpetual-motion kinda gal to a glup-down-supper-crash-on-the-bed shadow of my former self, big time anemia, and early-onset osteoporosis, I went to the doctor. Oh, and I was pooping my flippin’ brains out; watery diarrhea for eight or nine months. She scolded me for my low BMI, told me to eat more protein, and directed me to the exit. I figure that she dismissed me as a closet anorexic, a middle-aged woman desperate to stay petite. Talk about prejudice!! (Don’t worry, I won’t go down that road!)

    Fast-forward six months…

    I went back to the same office but saw another staff member, a CNP. My watery diarrhea had not abated, not once, not for a single day. My weight was terribly low and I had spent months being unable to indulge my love for being active and exercising…with the exception of running to the bathroom every friggin’ hour or so and vigorously disinfecting the, ummmm….blast zone?! Within a few minutes she stated that she needed to have a Celiac panel run on me. That was the first time that I had ever heard of this delightful disease, but now we’re buds.

    To make a long story short, or to at least shorten a story that I’ve already made long enough, I have Celiac. What pisses me off is that I spent MONTHS suffering, yes SUFFERING, from the symptoms because the first doc hadn’t considered Celiac. My whole life I have been petite and active. Being small is my genetic destiny and I have NEVER abused my body by starving it, etc… eating healthfully has been a priority for decades, as I believe whole-heartedly that food should nourish and support the body. People already thought I was weird or had food issues because I haven’t indulged in fast food and don’t have a sweet tooth.

    It was a dangerous and foolish assumption on the first doctor’s part to ASSume that I am an insecure woman with food issues. In reality, I was a once vibrant person quickly fading and (as I mentioned earlier) SUFFERING from the effects of Celiac. The RAVAGES of Celiac.

    Officially diagnosed in mid-December, I have gained weight, am working out six days a week, am bursting with energy, and finding that I am eating MORE healthfully than ever! My focus is on eating whole foods and being completely aware of the reality that yes-it’s-gluten-free-but-is-still-processed-shit. I am eating up this challenge in life; to improve my health and wellness with every bite of food!

    Well, (sorry, the story isn’t quite over yet!) after about a month and a half of basking in my own improving health and increased vitality, I notice that my vision is screwed up in one eye. Yesterday I was diagnosed with cataracts. The doctor feels that it is related to my Celiac. What?!?!?!? I had not heard to the connection before that moment. Yup, there is a relationship between the two C’s. I was like, for the love of Pete, what’s next? Heck, at least I don’t have to worry about prostate cancer, right?!

    What brings me to this blog tonight was waking up starving in the night…so while sitting here in the glow of the computer screen, drinking tea and eating GF pretzels (okay, okay, dammit. I do have a weakness for GF processed foods. One product that I can’t resist: crunchy, oh-so-yummy pretzels. Don’t know if I can say the name, so I won’t. Buuuutttt, they are so GOOD!!) I happened to end up reading on this site about the fact that folks with C have higher rates of hardening of the arteries and the author made a logical connection between carbs like rice, potato starch, etc… and inflammation. Crap!!! Argghhhh…the pretzels and I just broke up. Sniff, sniff… my ONLY indulgence…(no, seriously!! I’m not a foodie kind of person. Yes, I’m weird, okay?!?!?) But anyhow, they are in the trash and now I have to fine-tune my noshing a little more.

    It cracks me up to think that I spent decades enjoying and taking for granted the fact that I was healthy, strong, and not facing weight struggles. I had two big, fat healthy babies, have a glorious and sometimes insane job as a fourth grade teacher, and never smoked or indulged in similar dumb ass behaviors. Then I hit middle age and the doo-doo hit the fan at the same time!! I swear, middle age has held more surprises than puberty.

    Ahhhhh….thanks for the listening ear and the forum for a good rant.

    Reply
  72. 72

    mtpockets

    I was 5 when we started going to Drs. for my “tummy problems”. I had severe eczema when I was a baby. It settled into my hands and there were many days I went to school with my hands wrapped in gauze because the skin was split and peeling. I was always as my grandmother called it “puny” for my age. Sick often, lethargic, depressed. The Drs. always said to drink more water, eat more fiber, take this laxative. My Mom finally gave up trying to figure it all out. I would alternate between severe constipation and diarrhea. I would usually go several days without any movements then my Mom would give me cracked wheat and I would be glued to the toilet for the day or two following.
    Around 12 years old I developed severe stomach pains and joint pains. Back to the Dr who told me I had bleeding ulcers because I was nervous. So started the multiple trials of anti-acids. Nothing helped. I went to physical therapy for two years for my joint pain. My mom finally put me on a baby food diet and I improved significantly. So we thought I was well and I went off the diet. Back came the pain and the throwing up bile and blood.
    Several years later I developed annorexia partially because I was so depressed and partially because it hurt when I ate. After I married and fell pregnant I improved my eating habits for the baby’s sake. After giving birth to four children in six years I became extremely sick. I asked my current Dr why I was losing my hair and why I had petechiae all over my skin and random bruising on my arms and legs. He told me It was common when people started aging. I said I’m 26…not 86.
    Around this time I was diagnosed with Interstitial Cystitis and my abdomen was constantly so swollen people kept thinking I was about to deliver another child. My Dr said I had IBS and he put me on prescription strength anti-acids for 4 months. He also gave me a prescription for bella donna. What!?
    I finally got to the point where I was so sick I had to have help to go from my bed to the bathroom. I was eating practically nothing and still gaining weight amazingly fast. My hair fell out in clumps, clogging the drain and covering my pillow. I started making plans for my kids when I died. I was headed out and my husband and I knew it. My Dr kept telling me it was because I was recovering from surgery and the low vitamin levels on my tests were cause I had 4 kids and I should get some rest and try this pill or that one.
    My dear husband went online and ordered a genetic test after deciding that my symptoms pointed to celiac. Sure enough I was positive. I lost 15 lbs of inflammation from my abdomen in the first two weeks being gluten free. To this day I have never even bothered to get it put on my charts because I won’t have anything to do with trusting a Dr ever again. I was 35 when we finally figured it out.
    I went to Drs all over two states and took enough pills to fill a swimming pool. I had tests that said I was anemic and low in this or that. I went to the ER several times because of dehydration because it hurt my stomach when I drank water. How is it NO ONE ever thought to test me for anything further than “IBS”? Who in their right mind thinks it’s normal for a twelve year old to develop bleeding ulcers? Stress? Yes my body was very stressed. LOL I am glad to be on my very long road to recovery, thanks entirely to websites like these where people are willing to share all the tips and tricks to treating this disease. It is a marathon not a sprint, but baby I am so glad to still be in the race.

    Reply
  73. 73

    Sarah

    Maybe I am one of those rare cases where this started severely at birth, but it took 37 year’s for a diagnosis and the damage is permanent. No one knew what this was back in 1975, so my mother was told rydelin was the answer when I was 9 mo. old. She refused to listen and after 12 doctors, took me to U of M and spoke with a holistic doctor. They put me on the Feingold diet. I was always in severe stomach pain. No artificial anything and I had reactions to much, much more. I was called bubble girl. I missed 2 mo. of school a year.
    I hit puberty very young and most of it stopped. Then, at 30, I had a baby. All heck broke loose.
    Within 3 weeks of delivery I weighed 89 lbs. I thought it was a bad toilet flu. I couldn’t gain weight and always had diarhia. I went to a GI who threw me some Prevacid and said I probably have Crones. No one would listen, so I dealt with it.
    At age 36, I got married and lost my job within 4 days. My system went haywire. I was a size 3 and shrinking. I was in the ER weekly on mega pain meds for severe stomach pains and my GI kept telling me I was a stressed woman who needed more wheat bread and meds. Within 2 mo. I could not walk or hold a cup of coffee. My doctor put me on more meds and sent me to every specialist known to man.
    I was done playing the game. I did my own research. I found Celiac disease. I switched Docs, asked for correct testing with biopsies. I was finally diagnosed. I went extremely strict gluten free. I got off all meds. I gained 40 lbs, but I am alive. My organs we’re starting to shut down. I am glad I became my own doctor.
    So here I am at 40. Maybe I am supposed to be a size 10, but I’m ok with that. I still have a lot off issues. Chemical allergies big time too. No soy, legumes, grains, canola….etc. But, I am here.my daughter has a mommy and my husband has a wife. Thank you.

    Reply
  74. 74

    Sam

    I have had issues with dairy and gluten since I was a child but due to very severe epilepsy and other brain problems along the lines of demylienation disease and grey matter overgrowth that started at a few months old all other things were overlooked. The grey matter and demylienation issues resolved themselves by nine months the epilepsy was supposedly irretractable but was ” cured” by hgh injections at fifteen to sixteen after years of every medication in a psych 101 book being tossed into my body and then some as well as developing allergies and toxicity to every one of them. At sixteen or seventeen I was diagnosed hypothyroid and no growth hormone ( after I’d suggested such for years). At this point my overlooked infant dairy issue had been ignored for years and despite my best efforts to avoid foods that hurt me ( dairy wheat products and anything out of a cow) the public school system and a move to the midwest made avoiding these food near impossible. My medical case was so closely watched I am shocked it took till almost eleven years post epilepsy to get a doctor to consider celiacs despite cousins having it and crohns and my mother showing all the signs as well. Then again it took them twenty two years to admit I had a completely crooked nasal septum that severely affected my breathing by blocking most of one side and almost ninety percent of the other making it hard to breathe and get surgery to fix it. So here I am almost twenty seven years after infant diagnosis of dairy problems and ” probable issues with gluten” suffering severe malnutrition most of my life that only got better on a gluten free dairy free bovine hormone free diet I have been on for the last five years. And my gi tells me I have to do the gluten challenge to get diagnosed, and she also told me she thought it was mostly in my head and really a part of my lifelong eating disorder that was initially triggered by some foods making my tummy hurt and making me fat ( and bloated, woozy, Ill, etc) as a child. So the eating disorder caused by celiacs disease and allergies is the cause of said celiacs disease and allergies, and my preteen age body that is a healthy bmi due to eating preteen level calories is too small… But it was obese when I was still eating gluten and dairy and I was in so much pain and my hair was falling out and more. Since dropping gluten I have grown and most of those issues went away. But instead of diagnosing based on symptoms and family/ personal medical history I have to self gluten for four weeks and most likely gain or lose twenty pounds or more that due to hypothyroidism and other side effects of meds that still linger for the chance I will damage myself enough to get a diagnosis I already qualify for based on symptoms. Oh and ignore the failure to thrive and infertility ignore the child body ignore all the obvious signs, it’s not official till I go through four weeks of pain and misery for a test that may come back false negative and possibly have epileptic relapse while I’m at it ( before I dropped gluten I still had myopics once every four months and micro absence seizures, they disappeared on my modified ketogenic diet). This is going to be so fun, the gi doc said despite the results I should stick to my current diet because it works; and she completely ignored part of the reason I went to her in the first place which was probable parasitic infection on top of celiac disease diagnosis. She called me a hypochondriac anorexic and said I need lifelong therapy and heavily suggested everything was psychological ( ignoring well documented medical history ) most of the visit but at least I got a colonoscopy upper abdominal and biopsy scheduled. This is ridiculous, that’s all I can say really well I’m off to day one of pure pain gluten challenge… If I have a seizure due to this I’m suing.

    Reply
  75. 75

    Sam

    Almost forgot my symptoms gluten causes :fatigue full body pain, fever, blistering hive rash, brain fog, fiahreah or constipation, siezures, failure to thrive, intestinal bloating burning and pain, fire feces, weight gain ( extreme loss as a child) malnutrition, hair loss, muscle mass loss, nausea, vomiting, and more. Dairy and bovine protein cause abdominal issues swollen tongue or throat and limbs, painful nerve tingled and body wracking pain complete with bloodshot eyes and burning throat and sometime inability to move. I had to quit a job due partial asphyxia of the throat because I was exposed to dairy, gluten, and bovine hormone every day in the form of flour, cheese, and meat that I probably inhaled and ingested in the job despite my best efforts triggering celiac and allergy symptoms ( both cause corpse skin). The gi doctor I saw said that there was no way that job triggered any such thing and it was all in my head… My primary physician disagrees since she had a doctors note ready from the time I officially started said job that states ” gluten intolerance and dairy and bovine protein allergy” as the reason I have to quit months before I had to quit. Back to gluten attack challenge.

    Reply
  76. 76

    Kim

    I would just like to share my story in a short form. I can answer any questions if need be.
    My unknown condition became so bad at 24 during a seperation, as we know stress can fuel an onslew of conditions. I lost 40 lbs on my already slight frame within two months. I was sent home from work because I was sick as a dog, told not to come back without a doctors note. Went to the clinic, the dr sent me to the hospital for tests. Two days later the dr had not received the results; concerned he called the house. I was unconscious on the floor (unbeknownst to anyone
    ; car still idiling half in the driveway), he called my next of kin, my sister, she came to check on me with direct orders from the doctor that if I wasn’t at the hospital within 30 mins he would send the paramedics to my house. I was in the hospital for over three months; I was told if I had not gone that day I would have died on the floor. After a month of my doctor and my specialist spending the most time I’ve ever heard of with a patient, I was diagnosed with celiac and during my long recovery they had arranged for an hour long, two month daily visit from my nutritionist at my hospital bedside while which they still checked in on me daily. I really appreciate the care I received from my drs, nurses and specialist, specifically my dr who went over and above what he needed to do and saved my life.

    Reply
  77. 77

    Travis

    So between my December 2012 and December 2014, I had been in unpredictable on and off pain. It would start with nerve pain in the legs and sitting being uncomfortable. Go to emerge, after hours of waiting and an ultrasound, I receive a diagnosis for epididymitis (inflammation of a tube in the testicle). Get antibiotics and go home. Do some research on this “diagnosis” and discovered the number one cause for this condition is side effect of an STI. Funny thing, I was practically a virgin at that point in my life so I was puzzled. Nonetheless, the nerve pain faded and then returned. Sitting was unbearable. I go see a urologist and this guy literally see’s me for five minutes and says I have prostatitis. I do research on prostatitis and learn that it’s a poorly understood condition with next to no cure. I fall into a mindset that I have this condition I’ll have to learn to live with.

    Meanwhile, I notice my abdomen has changed in shape severely. At first I thought I was imagining things but my first Summer home, my family kept crackling beer belly jokes. I also had a lot of bloating and flatulence. I had off and on abdominal pain that I’d attribute to “prostatitis”. At a certain point, I became content living with this pain as it was off and on with good times still left to be had. However, eventually the nerve pains became very unpredictable. Things that were supposed to calm the Sciatic nerve down weren’t working.

    By last September, I was convinced I was in hell. I couldn’t sit in class without feeling pain of some sort. I was up all night in agony, googling remedies for fibromyalgia because I was convinced that’s what was happening. I started to feel like a crazy person. One minute my pain is nerves, then stomach, then muscle related. I could not think of anything that could make sense of all my symptoms. Then, last October, my doctor suggested going Gluten free. As little sense as food causing my pain made to me, I decided to cooperate. I was at the point of losing hope.

    So I did it. Went all of October without Gluten. My extreme pain episodes had sufficed but I still had that norm of pain so I was convinced the gluten free diet just wasn’t for me. I was just happy my severe pain episodes ended and I’d absorb that delicious gluten into my somewhat painful body once more. It was weird though, somewhere in November/December, I had gone back to normal altogether. I no longer had to worry about planning an exit for social occassions because my body could handle it. No more barely wanting to wake up in the morning because of fear of the pain. I could get up, do what I want and when I wanted without fear of pain.

    Until recently, I had some minor symptoms re-occur. However, I’m not getting down in the dumps about this. In the first two years, I had this pain, Ii would get depressed, google symptoms and assume I had some easy fix condition only to be told by doctors I was wrong. However, this is different. I stopped Gluten and even though I wasn’t better right after, I believe my intestines eventually healed and started properly absorbing nutrients. It just feels like coeliac is the answer because it’s the only thing that has worked since this has started.

    Point of my story is, I literally suffered for 2 years before I got anywhere with this pain. One reality is that Coeliacs disease is just being understood now and it’ll take time for all doctors to be aware of it’s adverse effects. This is a reality that can be easily changed and will change with all the awareness going on about it. However, one reality that I have a fear of never changing is specialists treating their patients like fast food customers.

    I’m appalled by the outrageous diagnosis’s I’ve received with next to little proof. I’ve been diagnosed with Epididymitis with no signs of an inflammed testicle. I was told I had prostatitis with no sign of infection or an enlarged prostate. I was diagnosed with Pudendal Nerve Entrapment with no sign of my pudendal nerve being compressed. Part of me is hoping to see improvement like I did once I went gluten free.

    Trust me, if I see results again, I will very much be booking a blood test and glutening up for a month to ensure the most accurate results. Should I be diagnosed Coeliac which I’m sure will happen, there’s a long list of specialists that will be getting a complaint from me based on their dismissive behaviors.

    Reply
  78. 78

    Julie F

    I believe I have had Celiac for most of my life. I’m in my mid 40’s now, but as long as I can remember, I have had symptom. For instance, I had severe eczema as a child. I suffered severe,severe stomach pains all through elementary school, which was considered to be from a “nervous stomach”. I was diagnosed with hypothyroidism at the age of 11, which they ultimately removed in my early 20’s. Said had pre-cancer cells, but not the case. I was unable to gain weight. Was put on prescription milk shakes and told to eat a lot of cakes right before bed time. I have an irregular heart beat and was put on a medication to control those symptoms. I started then, to have issues with my throat. I was sent to a GI guy for endoscopy, who FINALLY noticed a change in my stomach lining leading him to be suspicious of celiac at age 40 . A blood test confirmed. He gave me the diagnosis and showed me the door. Told me to seek out a support group that was over 1 hour away from my home and on Sunday evenings only. I was left alone with this and confused, angry. I did most of my on researh and made changes accordingly. I was in denial for over a year, until I started reading what this disease is doing on a cellular level and became very scared. I was angry because, as mentioned, I was never asked to follow-up to monitor my progress or to even see if I was feeling better. Through my own research and modifications I began to feel like a whole new person. Every symptom mentioned, I have. The depression, anger, was all resolved with this diet change. Oh, I forgot to mention, I was treated for scabies also because of the intense itching I was having as a result of the gluten. How embarrassing is that????? Doc told me, itching has nothing to do with gluten. Didn’t see the typical signs of scabies, but said everyone is different After further research by myself, I proved her wrong. It’s been a long road, and I am sure I left out a lot more, but these most stick in my minds.

    Reply
    1. 78.1

      icha

      I’m interested that you also had throat problems, JulieF. What kind? My MIL and I both did too, but no one thought they could be gluten related. We had all sorts of ENT workup: tubes down the nose & throat, crazy barium drink, you name it. They never figured out what her problem was, but a really good ENT caught mine: blood blisters! in my throat!! so gross. It felt like shards of glass when I tried to swallow. I used to get them about once a month, now I don’t get them anymore.

      Reply
  79. 79

    ann bloomfield

    my daughter is 35 yrs old. she became ill in 2013 wch led to many tests. since those tests she had moved from Essex [England] to kent. where she continued to have many conditions misdiagnosed. many meds for various problems. eg her mouth was never free of fungal virus[so they said] her weight dropped from size 10 to 6. im shocked today as a letter arrived from Essex to say my daughter in 2013 was diagnosed with celiac….surely her records were passed on?. is there damage to her body because of this? im livid

    Reply
  80. 80

    Sara

    Doctors can be so frustrating! It took me 10 years to get a doc to even do the blood work as I had no GI symptoms. I have had migraines since childhood, but they had become chronic. Finally got the labs done, and they we positive. Was sent for an endorsed & biopsies. At the time of the endo, the doc commented that he could believe that I wasn’t having GI symptoms because my intestines were so severly scalloped. Biopsies were positive, too. Guess how they informed me? I got a 1 line letter in the mail 2 weeks later that said, “You recent procedure confirms you have Celiac sprue”, followed by someone’s signature, but not anyone I had seen.

    Reply
  81. 81

    Laura

    I have just been diagnosed with Celiac. It is caused by Lyme Disease. Lyme Disease often comes with, and/or results in one or more co-infections such as Babesia, Parasites, Candida etc. Gluten, sugar and dairy feed Lyme and co. I have Lyme because my grandmother was bitten by ticks before she became pregnant with my mother. It crossed the placenta down through the generations. IGeneX test for the disease. I believe Lyme Disease is endemic and this is why so many of us are sick now days. Lyme hides inside cells. The immune system creates inflammation to destroy the cell in order to get to the Lyme but the Lyme Spirochete evades the immune system by cork-screwing into the next cell.

    Reply
  82. 82

    Matthew Austin

    When i was a child i had many allergies due to a poor auto immune system. I was under the supervision of great almond st hospital for the first 14 years of my life. At 14 we were told that it had all gone now and i was sent on my merry way :)
    Around 10 years ago i started to get stabbing pains in my gut, i was feeling tired all the time , my joints were aching: but i just attributed this to stress. 16 years as a chef/kitchen manager can certainly put even the healthiest of men through their paces. As 15 hr shifts can be hard to keep up with when feeling so bad i went to see a doctor; we went through the standard procedure and some bloods were done. Apparently i was a healthy 20 something male with slightly elevated ferritin level (attributed to alcohol).
    My life started suffocating me, my mind was foggy and depression was getting the better of me. I left my girlfriend of 4 years as i couldn’t handle the pressure of a relationship, everything was just too much!
    I moved into staff quarters of a place i was working at but it wasn’t long before that all became too much for me, and i had to quit the job.
    I have been constantly ill for 10 years, getting worse as each year passes. I have been homeless for half of that as i have been struggling both physically and mentally. I have lived in an abandon office block, in hostels, on friends floors, on the streets if i can’t find a place. There was always someone there to take my taxes as i worked myself into an early grave, but when i needed help those people had gone. It has destroyed me, i went from having a beautiful home, with a beautiful girlfriend and loads of loyal mates that i have know most of my life, to practically nothing. I was so that depressed that i tried to put myself in prison three times, the last time successfully. I got a roof over my head and three meals a day for two months but weirdly enough that wasn’t enough to raise my spirits.
    I have been out for a year now and have been staying on my sisters sofa, again trying to find out what is wrong with me.
    I recently had an endoscopy which proved fruitless as did the other horrifying procedures that came before it.
    All this time, all this pain and all this destructive behaviour could have been stopped in a matter of weeks if just one doctor of the 20-30 or so that i had seen (over 10 years, across 4 county’s) had a fu*kin clue about gluten intolerance.

    It was only recently when i decided to investigate the allergies i had as a child that i discovered the truth. reading some of the stories on this site i almost cried, 10 years i have been looking for what was making me so ill. I had no idea an allergy could come back, and as i didn’t have gluten as a child i wasn’t aware of the negative reactions: i thought my allergies were linked to hyperactivity :/
    All the migraine headaches, joint pain,debilitating stomach pain, the inconsistent stool, the lethargy , the swelling of the bowl (looking pregnant, not a good look for a bloke), the unexplained vomiting, the pains in my eyes, the foggy brain, the depression, the consistent high ferritin reading even though i had all but given up alcohol for year or so. Ive got a meeting with mental health in two days where I’m pretty sure they are going to diagnose me as being bipolar! or scitzo or something.
    I , like lots of other people thought it might have been hemochrombtosis or fibromyalgia. Not one doctor even hinted at the possibility of an allergic reaction to gluten! I have stopped eating gluten a couple of days ago and am starting to feel the benefits already. i have yet to have this confirmed but there really isn’t a doubt in my mind.
    I think the worst part about it for me has been that people make there assumptions on who they think you are.
    some think you are lazy (70hrs a week as standard, week in week out before i got too ill)
    some think you are mental,some think you just need to look on the bright side of life ( generally those who experience the brighter side on a regular basis).
    And my personnel favourite ” i think its just all in your head mate” ( a friend of some 30 years until recently)
    with no proof of what is happening to you the doctors and people you know will always come to their own conclusions, sometimes that hurts more than the affliction its self :( I’m just glad i know what ti is now, two days gluten free and I’m already starting to feel the benefit!

    Reply
    1. 82.1

      Natalie

      It’s crazy what gluten can do to a body. Glad to hear you’re feeling better. Hang in there!

      Reply
      1. 82.1.1

        Paul

        Matt if you don’t feel 100% try adopting a 100% grain free diet, this means no gluten free alternatives. I did this and it saved my life.

        Reply
  83. 83

    Shawna

    I’m so grateful to hear other stories and know I am not alone! My symptoms started 2 1/1 years ago when I was pregnant with my daughter. I was well past the first trimester but came down what seemed to be a violent flu bug, so I thought. I went to the Urgent Care and was sent away with no question asked about GI. But I never really recovered. About every 2-3 months after that first incident I began vomiting and had such a tender stomach I could barely eat for a week. I kept going to urgent care and was told it was the flu. Finally I went to see my Dr. and he first told me that since I was a young mother my immune system was probably low. I went back several months later and told him I thought something was really wrong. I asked to be tested for stomach issues, I thought maybe an ulcer. He ordered a whole panel and told me he was only putting the celiac panel on there to rule it out, that only 1 in 1000 people have it (which is wrong). I was dumb enough to wait several more months before taking the panel because I was afraid it would be expensive… what I would pay to have those months back! I finally became so desperate, I felt sick every day. I finally gave the blood samples. I had to call the Dr. and ask to come back in for the results. Luckily my Dr. was out and I got a nurse practitioner who had roommate with celiacs. But even still, she basically just sent me home with a stack of papers and said, “hope you feel better”. It took 2 years to be diagnosed. I have never even wanted to cheat because my life has changed for the better in so many ways! I scheduled a Dr. appointment after 3 months being GF just to check in. What a waste of time and money. The Dr. said, “with celiac I pretty much just tell patients, ‘if you feel good, then your good, if you don’t, be more careful.'” Sage wisdom. I learned almost everything I know from online communities like this. I really don’t know what I would have done with out these kinds of resources. Thank you Gluten Dude!!!

    Reply
  84. 84

    A

    I really appreciate this page..I was diagnosed two days before my 31st birthday, and undiagnosed celiac/other autoimmune diseases have really affected my life’s path. Since hindsight is 20/20, sometimes I get very hard on myself for suffering for so many years of misdiagnosis. This helps take that pressure off a bit.

    Reply
  85. 85

    Amy

    I was diagnosed August 2015, I was 44. To be a little TMI, I went in for possible hemorrhoids, and came out with 5 stomach biopsies and 4 days later a diagnosis of Celiac. WTH?! I was an active child, teen, young adult… I was a competitive swimmer growing up, and back then we “carbed up”, how could I have celiac?! My family (as I am sure yours too) loves pasta, baked goods, sandwiches, your basic wheat. I even married into a family who produces WHEAT!!!!
    When I was diagnosed, I was told to not eat wheat, barley, rye, and possibly oats. That was it. Here is your diagnosis, no follow up, no direction, no “type” of celiac, nothing.

    I made an appointment with my GP, brought my husband along (bc as old school as it seems, when you have a “man” with you, people tend to take you more seriously. Again, WTH?! He now accompanies me to ALL my doctor visits as if I am a child, bc for some reason I don’t get the eye rolls, or the “fix it with a pill” or end up with a 2nd visit with the same problem, when he is there. If I didn’t have a husband, I swear I’d rent a man to accompany me to every single appointment, otherwise I am sure I’d be told I was having a case of the “vapors”, LOL!)
    My GP sent me to a well known dietician in our area, I had seen her before for weight loss and was not impressed, but went anyway to make sure I covered all the bases and they could never tell me, “if you had done what I had asked….”.

    So in I went.

    The dietician didn’t even know why I was there!!! She said my doctors had not forwarded any information to her… lovely (she even admitted she knew very little about celiac.) After I caught her up and the faxes came through, she pulled out a list of gluten free products at the local grocery store, and then she gave me a list of foods another “gluten free” patient had sent her, bc those were the foods that worked for her. On the list of from the gluten free patient was, “…I find that eating at buffets, I have a better selection of food…” REALLY?! Ummm… NO! And the list the dietician gave me was ALL PROCEESED gluten free foods. She never discussed deli meats, or cured meats, she didn’t tell me to eat from the produce section… At no time did she tell me what words to look for, to identify gluten. She also said to avoid buckwheat, because it was wheat!!! I quickly corrected her, seeing as how we are MASS producers of wheat, and BUCKWHEAT IS SAFE. I can’t believe this woman still has a job, and the same job at the same place for the past 25 years! OMG!

    With that, I went home and cried for at least 2 months… ate salad after salad, and roast chicken, which I use to love but if I see another plain roasted chicken I think I will throw it at whoever cooks it! During those months I dealt with anger issues, related to food, mood swings, and almost a feeling of mourning. There seriously needs to be a place one can go to detox from a life time filled with gluten. While it was easy for me to quit cold turkey, the side affects were horrible for me anyway. I didn’t start to feel better until my 3rd month, and even today I get a little pissed when my brain is craving a REAL bagel, or my REAL lasagna.

    With all of that going on ^^^, I took matters into my own hands during those first months… I cleaned out my spice rack, my pantry, etc. I gave A LOT of very expensive spices away, bc they were mixed with other spices, and had an anti caking (wheat) ingredient. Many of my friends found themselves suddenly blessed with soups, mixes, spices, creamers… you name it, they got it.

    I do allow gluten in my kitchen… this is bc I have a family, and they eat it (only at times), but for the most part, we are gluten free. My husband said he was tired of eating meals that I could not eat, and one of my children said that they wished they had it so I wouldn’t have to go it alone. AWWW…. I do my best to keep the counters scrubbed down, my utensils for cooking clean and approved by the celiac guide, and my kids know to ask what they are allowed to eat is gluten free an expensive.

    Right now I am in limbo with doctor hell. I’ve decided to fire my gastro who diagnosed me, not bc he was wrong, but bc of his lack of educating himself and the possible diagnosis’ of not only celiac, but of other things his patients could have. I fired my dietician, bc of her lack of knowledge… I fired my endocrinologist bc he’s a tool and I’ve given him too many chances to get his stuff right with other things, and bc of his lack of interest and knowledge with celiac and how it attributes to my other autoimmune problem, and sugar levels.
    The ONLY doctor I have not fired, is my GP (even though my husband comes with me). Why? Bc she was the ONLY ONE who looked at me and said, “Now EVERYTHING is starting to make sense, as did my husband. It’s good to know you are not crazy, and the last decade of your life is not going to end up with you in the nut house, one day! :)
    My mission now, marking my stuff with the word “MOMS”, and buying a new toaster ONLY FOR ME, and finding an endocrinologist in another city with experience in celiac and thyroid disorders.

    I hope my HELL, gives you hope that you are not alone and you can do this. Its a pain in the ass, but it is doable. You maybe glutened a few times, it is trial and error, but so was learning to walk, learning to care for your first child, learning to be married that first year, learning to watch your sugars (if you do that), and basically learning to live a happy, productive, healthy life. You CAN DO THIS!! :)

    Reply
    1. 85.1

      Gluten Dude

      Wow…thanks for sharing your journey. A buffet????

      Reply
  86. 86

    Paul

    I’ll try to keep it short since I’m on a phone. One day felt terrible in highschool…depression insomnia migraine symptoms…though it was a phase but it never ended. Doctor pushed lexapro which I stopped after first dose. never felt like my old self for 10 years and I am now 25. But through that time I managed to get a degree tho everyday I felt like shit. I always thought I had Lyme or some shitty disease that compounded the anxiety depression symptoms. I adopted a GF diet about 6 months ago and gradually improved…I reintroduced wheat and immediately had a negative neurological reaction with only minor intestinal pain. But for some reason I react to GF alternatives as well such as quinoa or buckwheat. This is when I decided to go totally grain free.

    This grain free decision was the holy grail that solved my problem. My head is as clear as ever, I sleep well, more energy, a desire to make more of myself… I’m finally feeling healthy and am super elated.

    To any of those who don’t improve 100% on a gluten free diet try going 100% grain free leaving out other gluten free alternatives, like a paleo diet. This action was my lifesaver.

    Reply
  87. 87

    Heather

    It started as anxiety. Terrible, terrible anxiety. And pain in my chest. And just feeling wrong. Initial GP visit with bloodwork and EKG revealed nothing more than hypothyroid – take some levoxyl and we’ll see you in 6 months to retest your levels. All the symptoms remained. General malaise set it – aches and pains. Tremors. Random numbness and tingling. Migraines. Panic attacks. Belching like a truck driver. And that pain that sat in my chest that made me think I was having a heart attack nearly every day. Back to the GP. More EKG, more bloodwork (looking at lupus and a host of other things that were negative), MRI on my brain to check for MS….18 months it was never ending. She said the chest pain was caused by anxiety and wanted to put me on anti-anxiety pills, which I refused. She threw a prescription for acid reflux meds at me. It masked the symptoms a tiny bit, but never cured it, clearly. After many visits to her, she eventually said “it’s all in your head. go see a shrink.” Yeah, I’ll tell you where to go lady….

    Finally went to a GI. He decided to do a endoscopy to look for reflux and/or hiatal hernial. At this point I was willing to do nearly anything. After the procedure, he told my husband it looks like celiac (major scalloping and totally dead villi) but biopsies will tell for sure. When I went back to his office for the followup when the results were in he said (and yes, this is verbatim) – “So, you have Celiac Disease. So basically, don’t eat anything with gluten in it, and if you have any other questions you can look on WebMD.”

    ……..thanks buddy. You can go to the same place as my former GP.

    Reply
  88. 88

    Wendy T

    My symptoms started at about 12 years old. Just around puberty. My parents were fighting a lot, my sister was on foreign exchange and I was getting sick… but not sick. Mental illness is not something anyone talked about in my family much. At 11/12 years old I started having problems staying focused in school, made some bad judgement calls including running away from home, things of that nature. I started smoking then too. It was all chalked up to my parents being separated for a time. It’s when my depression started.
    But after my parents got back together and my sister came back, even when things smoothed out, my problems got worse. I couldn’t focus on anything, failed lots of classes, spent a lot more time with “the wrong kind of kids”. I was angry or depressed all the time and simply couldn’t control my emotional impulses.
    It was chalked up to being a teenager. At one point I was accused of being on drugs and without any evidence, was kicked out of one high school. For the record, I was never on drugs, bot nobody ever asked me. I think I probably would have told them if I was. The only medical feedback I got for the first decade of my adult life was that I was anemic, but all women are anemic so I should just take some iron and eat iron rich foods and that I should be fine.
    No teenager should have to go through what I did mentally and emotionally. I knew something was very wrong but I had no idea what it could be. I felt *I* was wrong. I managed to teach myself to detach from my emotions… to be the rational voice in the back of my heart telling me to wait to make important decisions until I felt better. Especially when it came to killing myself. I never acted on my desire to die… not directly, but self-destructive behaviors can be their own long-term suicide attempt. I didn’t start having GI symptoms until much later.
    In my early 20s (keep in mind this is a decade after symptoms began), I was diagnosed with ADHD and placed on Ritalin. For 5 years I had increasing dosages as my system became used to the drug. During this time I had moved to DC for a job and was on a clinic insurance plan when I got the flu badly. The clinic assigned me to a doctor I’d never seen before and he was the first to think that I shouldn’t be this sick. Here I was in my late 20s and I was getting horribly ill from the flu. He ran a few blood tests including B12 and Iron and found them to be deficient. He diagnosed me with Pernicious Anemia and set me to have B12 shots. Insurance would only cover 1 shot a month and I would have a noticeable difference in my energy and focus for about a week before I’d crash… so three weeks out of a month, I was still foggy brained, exhausted, awkward and clumsy. At this point I couldn’t remember important things or stay on task for longer than a few minutes except within that week after a B12 shot.
    Things didn’t work out in DC and I headed back to Arizona where I started looking for a new doctor who was willing to give me B12 shots more often. In 2002 I found a doctor who specialized in a few things, but merged his training into Metabolic Psychiatry. He was treating people for things like Dementia and Depression using standard medicine combined with an holistic approach (checking vitamin levels, hormones, etc and treating any deficiencies.) I thought this sounded like someone who could help me and I went to see him. He ran about $1000 worth of lab tests including vitamin and mineral levels, allergies, and a Celiac panel.
    ALL of the vitamin/ mineral levels were low and my Celiac panel was definitive. When I asked him why nobody had checked for it, he explained that most doctors still thought Celiac patients had to be super-thin with distended bellies and since I am fat (thyroid condition), they never would have even considered it.
    So from the ages of 12 to 30 I suffered from severe neurological symptoms not only from my reaction to gluten but from the vitamin deficiencies caused by it. I’m happy to report that my labs are normal now and my memory has returned. I have a few permanent issues that won’t go away now (irritable bowel, fibromyalgia/neurologic pain, I can’t stand or sit still for any length of time without fidgeting, inability remember words sometimes), but overall I’m much better off than I was. The only time the depression hits me now is if I get glutened somehow.

    Reply
    1. 88.1

      Wendy T

      I should note that my most recent GI (whom I’ve only seen for a year) has all my records from my early diagnosis, but last time I saw him asked me to start eating gluten again so he could run the blood tests again and see if anything changes (I get the labs done every year to make sure I’m still keeping things safe). I told him if I was going to risk my life, my job and my marriage to satiate his curiosity that he could do a biopsy. He wasn’t interested in that.
      I am in the process of parsing together the Promethease raw data breakdown of my DNA (Went the Ancestry/Promethease route out of curiosity) and will be sending him the genetic results for Celiac. Then I will be firing him and moving to a doctor that comes recommended for CD. Unfortunately, there are no CD specialists advertising in Arizona. I highly recommend everyone with CD find a local group to exchange information with. Finding the right doctors is crucial.

      Reply
  89. 89

    Kate

    First, thank you for asking us to tell our stories. Reading that Washington Post article, I felt like it was written about my life.

    Since I was little, I was always sick, always having tummy aches, always throwing up or having diarrhea, always complaining of pain, injury or other unexplained illnesses. Every virus or bug, I caught it. The most common response I heard was to “stop being a baby” or that it was “growing pains” and it would by pass. I remember being about 10 years old and going shopping with my parents and crying the entire time because my feet, knees and legs hurt so badly. My father ended up carrying me on his back (a 10 year old is not easy to carry) to help relieve the pain. After being diagnosed as an adult, my mother commented that she thought I was just making it up all those years, trying to get attention, and apologized for not taking me more seriously sooner.
    My worst period pre-diagnosis was between age 13 and age 22. By middle school, I had already had 12 fillings in my teeth even though I brushed twice daily and didn’t really drink soda. I had come to be known by my teachers and classmates as the girl who was chronically injured and chronically tardy. Only I wasn’t always late to school, I often was stuck in the bathroom praying to God it would stop before first class started so all I would miss was homeroom. I was sick constantly. Roughly 2 to 3 days a week I’d have an episode of sickness – usually diarrhea, sometimes vomiting, sometimes both – that would last anywhere for 1 to 8 hours. I had chronic migraines that I never told anyone about until I was going through celiac diagnostic tests. I thought no one would believe me and, like everything else, I would just have to learn to live with it.

    My primary doctor had decided I had IBS (translation: she didn’t know what it was) and would just throw a different medication at me every time I’d land back in her office because I needed a doctor’s note, yet again. But no med she put me on for IBS ever worked and I just kept getting sicker and sicker. One example that sticks in my head was my senior year of high school when my bible quizzing team was headed to the national championships in Indiana. We were somewhere in Ohio and had to pull over at a hotel because I was sick. I spent 3 hours in the bathroom while my entire team waited in the parking lot. Everyone was upset with me. Several members wouldn’t talk to me. My mom kept checking on me and asking how I was. The hotel employee kept suggesting we call an ambulance. And we were late arriving to the championships, which prevented us from taking 1st place.

    During that decade of my life, I was called “skinny fat” after I shocked the shit out of my classmates when I didn’t have a baby. I had skinny little arms and legs but a huge protruding belly from being constantly bloated and malnourished, so much so that everyone thought I was pregnant. When it turned out I wasn’t with child, they called me the skinny fat girl. I would wear baggy clothes to try and hide my gut and hated wearing dresses and NEVER went swimming because I was so embarrassed.

    I spent my 4 years of high school in adaptive gym because I was always injured. I tore the same tendon, the plantar fascia, three times in each foot. I also broke the sesamoid bone (you’ve probably never heard of it, it’s the small bone in the ball of your foot) in both feet, and was diagnosed with tarcel tunnel – which is like carpul tunnel but in your feet. It is rare in teens. Needless to say, I am really good at ping pong and shuffle board because I spent 4 years playing those while everyone else ran track, played basketball or softball. By my senior year, I was told by my podiatrist that if I would likely not walk by age 40 because of the chronic issues in my lower extremities.

    During those years, I was also a holy terror. I could not control my emotions, so I rarely spoke. Because I was so quiet, and because when I did speak was not nice, I had only a few “friends.” Of course, my parents and doctor chocked my attitude up to being a teen and having hormones. But I’m pretty sure my mom constantly wondered where she went wrong as a parent because she I would have weekly knock-down-drag-out fights, usually about nothing. Between the constant pain, the headaches, the sickness, the frustration, the stress from always being late or having to catch up, AND the hormones, I was a short fuse. But no matter what, I couldn’t’ control my fuse. Even birth control didn’t help. I would cry for no reason, become enraged over nothing at all and would often feel like I was watching this girl flip out only to realize it was me. I hated who and how I was but I felt helpless because I could do nothing to stop it.

    Like the woman in the Post article, I was hopeful that college would be different. But based on my rough math, in the 5 years it took me to graduate, I missed about 30 percent of my classes because I was so sick. By my junior year, I had my own Americans with Disabilities coordinator who worked with me to get special accommodations that allowed me to miss classes due to my unknown-at-the-time illness without repercussions. The ADA order I obtained, signed by the VP of Student Affairs at my school, also required my professors to allow me to make up tests or anything I missed due to being sick. For the first time, it felt like someone believed me, someone listened.

    My ADA coordinator was a blessing. He pushed me to keep seeing different doctors and identify what was plaguing me. He went to bat with the administration when they denied my request to move off campus early so I could live somewhere with a kitchen and prepare all of my own food. See, my college required all students live on campus through their junior year unless they lived at home with their parents. You also had to buy the meal plan whether you lived on or off campus. My parents lived too far away, and I didn’t eat the food. My mom was worried after she learned I spent an entire year living off canned green beans, carrots, pita and hummus because that made me less frequently sick. With my ADA coordinator’s help, I got my waiver and was able to both move off campus and not pay for the meal plan. Most of my professors were extremely sympathetic when I would miss class, run out halfway through or come in late looking like death washed over me. It was becoming clear to people that I was not faking it. That is because it was also getting worse.

    The summer before my 5th year of college, I came to my mom in tears. I had just been reprimanded by my boss at work for being late and disappearing for hours at a time, and was told I had one more chance or I was fired. Shit was real. I told my mom I wanted to do whatever it took to make this stop and that I couldn’t live like this any more. I knew it would cost a fortune (and did) but she said yes. We spent that summer at various doctors until I landed at a gastroenterologist. He first tested me for just about everything under the sun – Crohns, Colitis, ulcers, gastroperesis, H.Plylori, Giardia, Ulcertive colitics, colon cancer, intestinal cancer, stomach cancer – and I drank more barium than is probably safe.

    Then the doc said he was running another blood test. A week later, he called me in and said he needed to repeat it, because the number was too high and he thought it was an error on the lab’s part. When it came back the same, he said the test indicated I had Sprue, also known as Celiac disease, and he needed to do more tests to be sure. He went out of order, but regardless, after cutting out gluten and having the biopsy, he called and said “You have Celiac disease. The only treatment is to follow a strict gluten free diet. Follow the diet and come back and see me in a month.” In a month, I walked into his office, feeling better than I had in years, possibly my entire life. It took several years to truly feel well and to heal, but it was clear to me within days that we finally figured it out. I remember crying because I was so happy. It would stop.

    Yes, the struggle of living with Celiac disease and eating gluten free is real, but it is nothing compared to the hell of living undiagnosed with this disease. I am so thankful that doctors are starting to learn how to ID this so hopefully people don’t have to live as long as I did with the pain and suffering this disease can cause.

    Reply
  90. 90

    Christine

    After having my second child via c section I thought I was having the baby blues. Very depressed, tired, crying for no reason, lots of forgetfulness. I actually remember telling my husband I thought I had early onset Alzheimers. I had a few forgetful scenarios that actually really scared me. They were things that I should have known and remembered. Everyone explained everything away. You have 2 small children and are sleep deprived…. Shortly after this all began I developed a very itchy blistery rash on my hands. It got to the point that I had blisters the size of half dollars filled with fluid and it was incredibly itchy and painful. I couldn’t even unbutton my own jeans due to the blisters and cracking on my thumbs. I saw a dermatologist who said it was a type of eczema and there was no known cause and no known cure, it just has to be managed. They wanted nothing else to do with me, but I was so convinced this was an allergy of some sort that I begged them to do some patch testing. I found that i was allergic to 5 chemicals that are in just about everything, and was thinking NO PROBLEM, I eliminate these chemicals and I get my life back! At this point the rash was so bad on my hands that I couldn’t bathe my small children and had to wear rubber gloves when doing any housecleaning, dish washing, etc. I wore cotton gloves to bed with my hands slathered in steroid cream. This went on for 4 years. For 4 years the dermatologist swore this was nothing else, my PCP swore the dermatologist was definitely right, I went on depression meds for my baby blues and learned to trudge through life like this was normal. Finally last winter the rash spread to the bottoms of my feet. I couldn’t take it. I told my husband, I know this is something I am eating, I’m allergic to something. My husband is a pharmacist and he said, it’s like your body is attacking itself, I think it could be something autoimmune. So I started researching, again. I asked my doctor about autoimmune disorders and she did order bloodwork for some different things, it all came back fine. I came across info on a blistering rash, DH. And, people’s comments on the post about this rash sounded just like me. I went to my doctor and said I think its DH, I think I have an issue with gluten. She wouldn’t even listen to me. She said, “Oh no, that’s not a gluten rash.” She would not even order the bloodwork just to rule it out. She prescribed a DIFFERENT cream saying that she now thinks it’s psoriasis. I had such a bad flare that she had put me on oral steroids. The moment I went off them the rash went crazy. She said psoriasis is known to do that so that must be what it is. I ignored her and made an appointment with an allergist who supposedly specialized in autoimmune disorders as well. He was unimpressed, said there was nothing he felt he could help me with and sent me packing. He also said, this is not a gluten rash. A week later I woke up in the middle of the night with massive pain under my arms. I called the doctor’s office on a Saturday morning to see someone. They set me up with an APRN who while I was there about my lymph node pain took pity on me after seeing the state of my hands, asked me the story, and when I told her I thought it was gluten but that no one would listen to me and no one would order the test, she ordered it. A week later my numbers came back. My doctor left me a message on a Thursday saying that it was nothing urgent and that she would call me the following week. Meanwhile the results showed up in my online account and I researched them online myself. It was quite clear that there was an issue. By the time she called me the following week I knew I had to quit gluten and I was pretty sure that my results were serious. She called and said “It looks like you need to stay away from gluten.” I asked her if I should be seeing a GI and she said “it’s probably a good idea.” She was no help getting me into anyone and the docs she gave me as recommendations had waiting lists months long. My husband was able to get me into the GI at his small hospital the same week. This GI said he hadn’t seen numbers as high as mine in a very long time. He said he didn’t even need to do the scope to know I had Celiac but that he would do it to see how bad my damage was. After reading up further I realized how far back this all went. The brain fog and depression was not the baby blues, it was Celiac. The daily headaches I had been getting, the diarrhea, the exhaustion, the weight loss… all Celiac. By the time I was diagnosed I was at 5.5 years dealing with this. And had been told numerous times it was all eczema and even when I advocated for myself doctors wouldn’t listen. The amount of money in blood drawn, co pays for specialists, all amazing when you consider that I figured out my diagnosis myself. I thank God every day for that APRN who finally took pity on me and actually LISTENED to my words. I am 9 months out from diagnosis and my rash is non existent and I feel great. So thankful to have finally found the answer! I don’t miss gluten at all after realizing what it was doing to me! The scope and biopsies showed a 50% blunting and so the results weren’t as bad as the doc thought they may be. He didn’t need to put me on digestive enzymes or anything else. However, I think I likely had a sensitivity to start and as it went on and on probably turned into full blown celiac. My father also died of Colon Cancer at 54. Looking back I wonder, knowing that this is genetic, if he had undiagnosed Celiac since going undiagnosed is known to cause intestinal cancers. Knowing what I know now he also had a lot of GI symptoms and he also had a rash for years that he was told he was allergic to his own sweat. Makes me wonder!

    Reply
  91. 91

    Stacy

    Hi, my name is Stacy to say I’ve been sick my entire life is such an understatement, but I want to share my story, my journey, I’m taking back my life and my journey to the other side…I haven’t quite figured out this whole life process, destiny vs fate, but more importantly what brought me to this moment, the moment I realized “it irrelevant whether it’s predetermined or simply happenstance, if I’m not walking in peace. I also came to this realization, “If I were surrounded, it would be by people that didn’t have a clue so I eliminated all hidden traces, then I went gluten free” now the search for me and my mission to delete the “jiber jaber” from my playlist. In short, I’m learning how to take care of me.

    First let me share a little history, I had severe asthma from day one, dermatitis set in probably close to puberty along with anxiety and depression all of which carried on to my adult life. I can remember as far back as say first grade, I actually do remember my first grade teacher “Mrs. Goodman,” I had learning disabilities and behavior problems that in retrospect were mostly typical and perhaps if I’d grown up in a environment where I was encouraged to thrive, typical behavior would’ve been just that, and illness would’ve been dealt with as such, but I was dealt a different hand and I embraced the “atypical.” I remember lots of physiological exams painful allergy testing and a lifetime of misdiagnosed gastro problems, I learned early on in life how to create a look along with a pretty smile and nobody had a clue about me or what was going on inside my body or my mind, from the outside I looked like I had it going on.

    After years of being told I had colitis, irritable bowl, spastic colon, doctor visit after doctor visit I temporarily gave up on figuring out what the underlying problem was. In 1990 I had a goiter on my thyroid gland removed,looking back I remember thinking that was the scariest thing to go through other than the birth of my girls, ha that was nothing. I was always pretty athletic my entire life either running or weight lifting and I remember feeling pretty good about working out eating healthy and in 1999 I remember the week leading up I felt pretty fantastic I had worked out that day went to bed feeling fine and next thing I know I’m in excruciating pain that lead me to emergency surgery to remove the ovary and a grapefruit sized cyst that apparently twisted around it and once circulation is cut off that’s when it signals the pain to rear it’s ugly head. I continued to have cysts on my existing ovary and pretty painful periods but opted to just deal with it as the GI issues were beginning to become more bothersome, still not getting any answers, explanations or relief. I was offered pain relief in the form of pills and anti-depressants from doctors that felt maybe my pain was delusional. At this point I began taking Wellbutrin and prescription strength Motrin for the cramps.

    In 2005 I thought I’d found a Gastroenterologist that was going to solve all my mysterious pains and ailments her ordered a colonoscopy and I woke up to be told everything was fine but they saw something on my lung on the lower lobe, it was a benign cyst and once a year I would get a ct scan to check for change in size and hey “you look great, so keep up whatever it is you’re doing.” Of course I continued to have GI issues and yay now I had a new problem, but I looked good.

    It was in 2006 my uterus was removed I couldn’t bare the excessive cramps and bleeding anymore and the motrin and oxy were destroying my already damaged insides, I have to share this because if it wasn’t for bad luck I wouldn’t have any luck at all, when I was in recovery from my partial hysterectomy I guess either during surgery or from my workouts leading up to surgery my L4/L5 disc became herniated the moment I woke up in recovery, of course my OB was like I dunno what happened but here’s some pain meds and you might want to have it checked out once you’re feeling better, you look great see you in my office for a follow up, nice, so while I was recovering from the surgery I was in physical therapy 3x per week for my back. If that wasn’t enough during my recovery from surgery I got very, very sick, I lost 15 pounds in a period of ten days I went to my primary doctor and explained all my symptoms, he went into deep thought before responding, he then turned to me and said “what would happen if I starved you,” I said, “nothing, I would be fine, I only get sick when I eat,” he then asked me to follow a gluten free diet for four weeks. I was so happy to possibly figuring out why I had been so sick for so long and when he said “eliminate wheat” I thought no problem, ha, he then handed me a six page packet to read. After four weeks I was feeling somewhat better, he ordered the celiac blood panel which came back negative, since I was feeling better I was advised to continue eating gluten free, my Doctor opted not to do the intestinal biopsy he said I’d been through enough and it seemed cruel to put me through a gluten challenge just to get a positive result, he told me my symptoms outweighed the negative result. I agreed and complied.

    Leading up to 2008 I was still very sick, and somehow in between illness, surgery and recover I’m still managing a workout routine 5-6 days per week, in fact, it was always the first thing I asked about when presented with a surgery or test, “when can I start working out again.” I eventually was diagnosed with Thyroiditis and every six weeks I had blood work done to check my thyroid my B-12 and D vitamins. I began getting B-12 shots weekly and started on armour thyroid medication. Even with the b-12 shots and the thyroid medication I was still exhausted 24-7 it got to the point where my workouts were near impossible. I can’t remember exactly when it was, but I was in so much abdominal pain I went to the ER and was sent home as they found nothing, it got so bad that in order to put myself into the car I had to first sit down then put my right leg in and then I literally had to pick the other leg up and put it in the car. I went back to the ER the next day and was sent home again. I called my Doctor and he had me come in, when my name was called I burst out into tears and wobbled into the exam room, when my Doctor came in and saw the state I was in, and a very brief exam he sent me directly to the hospital where I was admitted at his request. I was immediately put on morphine and the testing began. I was put on a liquid diet until testing was completed, every single test came back negative, my Gastroenterologist was on staff at this particular hospital so he was called in to do yet another colonoscopy it came back negative as did all the other gastroenology tests, he told my primary Doctor the problem wasn’t in my gastro track that I needed a shrink it was all in my head, my primary Doctor told him it wasn’t in my head and he would figure this out on his own. What took place next can happen to any of us if we continue to accept the mistreatment Doctors to the media and people like the media that don’t have a clue and spread misinformation.
    It was now day five of being in the hospital and a new head nurse came in to take over, the daytime nurse was filling her in on all my information, the head nurse told her she didn’t need to know anything else, that if I would stop going to the ER and take care of my stomach ache at home they wouldn’t even be having this conversation about me. I’m here to tell you that after five days being on morphine, no food, no shower, drinking unimaginable stuff to prepare for unthinkable tests, my head literally turned full circle and when it resurfaced I was face to face with this nurse, I said “this isn’t going to work, you will not be my nurse” I called my Doctor on his cell, I’m not sure who I thought I was or had become but I’m pretty certain the drugs played a huge part, I told him what happened, he immediately ordered something to calm me down and had me moved to a private room with a private nurse, my private nurse came in and said “hello princess, I will be taking care of you from here on out and if you would like to report Nurse so and so here’s the number” apparently nobody liked her.
    My Doctor called a surgeon from another hospital and begged him to come talk to me and if he was convinced there was a problem to please do exploratory surgery. Dr. Pruett came to visit me we talked for awhile and he explained he’s only done exploratory surgery a handful of times and that my Doctor was trying to bully him into doing this one, he was being funny but serious, he agreed to do the exploratory surgery and disclosed he wasn’t thrilled about doing it at this hospital but what choice did he have. I told him what was going on here and said I would be happy to transfer, and with that said I was admitted to another hospital and I underwent exploratory surgery, when I woke up Dr. Pruett was waiting for me back in my room, he told me I had abdominal scar tissue blocking my intestines, he showed my the pictures and said it was one the most rewarding experiences to be able to go on faith and belief. I went home a few days later and saw Dr. Pruett in his office to check my incision, when he was finished he called my mom in to the room to let me know that when I came out of surgery the anesthesiologist found something on my neck thought to be a cyst on my thyroid. I had a needle biopsy to rule out cancer, and had the remaining part of my thyroid removed five months later Feb 2009.

    In May of 2009 I had my appendix taken out and in 2010 I had my remaining ovary removed as I couldn’t take the pain from the cyst any longer.

    In September of 2010 I decided it was best to quit smoking that I was running out of things to remove and at this point I was just asking for cancer.

    In march of 2011 I woke up in excruciating pain it lasted eight hours with no relief from any type of medication I called Dr. Pruett and told him I think it’s my gallbladder, he saw me the next morning and I was in surgery that Friday.

    In 2012 one year after I quit smoking I had my last ct scan as the cyst on my lung was gone!
    I’m happy to report I haven’t smoked since 9/1/10.

    In December of 2012 I had a skin biopsy from a rash that seemed to come and go, it appeared shortly after I felt like I had been gluttened, biopsy came back positive for Celiac.
    It’s been a very long exhausting road, and I’m still healing to this day, I figured out through my own process of elimination that my body cannot tolerate commercial food. I followed the paleo diet as a final attempt to feel better and did the elimination diet using the FODMAP as a guideline, sure enough the good ole brown rice, beans, asparagus, onions, garlic, corn, honey and many other things were causing a gluten like reaction, and packaged foods deemed safe by the FDA with 20 part per million of gluten turns out my body cannot tolerate them either.

    I can’t stress enough to be your own advocate if you’re still not feeling better and you’re not getting answers from your doctor it’s time to move on. Not getting a proper diagnosis will have a strong impact on your quality of life, and if not adhering to a strict (meaning zero) gluten free diet you’re putting the future of your health in serious danger.
    What I want people to know today and to let their friends and family know is, Celiac is a disease it’s not a fad it’s not cool it’s not like waking up one day and saying “hey I want to be a vegetarian” unless you have Celiac or Non Celiac gluten sensitivity that a doctor diagnosed then there’s absolutely no health benefit to going gluten free.
    The FDA passed a new standard of 20 parts per million of gluten in order for the manufacture to label it gluten free. This new standard is good from some still to much for others, a little bit of poison will slowly kill you.

    I love my newfound fellow Celiac advocate Jennifer Esposito’s quote “my celiac is not your celiac” not everyone’s affected the same way and some people are very fortunate to get diagnosed early on and thats because people like you and me continue to EDUCATE. Jennifer has an amazing story check it out and please spread the word you never know what’s beyond the image of the person standing right in front of you. Embrace your idiosyncrasies they make you who you are.

    Reply
  92. 92

    Kelly

    Want a horror story? Here we go. When I was young, I’d have issues with my stomach. Nothing major, but issues none the less. At 20, I had my first child, a daughter. After that, stomach issues seems to be the “norm”. Filed it under stress induced. I was young, a mother, working full time, etc. Lots of stress. But it was getting worse, so I went to the doctor. Yep, stress he said. One day at my mom’s we ate Wendy’s. Now I had to be about 24. Within 20 minutes of eating said Wendy’s, I was the sickest I’d ever been in my life, passed out on the floor, and a mess for my mom to clean up as my father was getting me on the gurney with the paramedics. 3 days in the hospital due to passing pure blood, I was told I must have severe food poisoning. About another year later, I started the rounds of gastroenterologists. If I wasn’t happy with one, I found another. Each time – irritable bowel. By the third one, I was so sick, I lost 80lbs in 2 months. He told me irritable bowel. I proceeded to hand him a medical abstract that stated if there is weightloss involved, it is NOT irritable bowel but something more serious. He pretty much told me I was full of… So I went on with life living on tylenol and gasx. I ended up at the OB/GYN’s office, told him what was going on. I was diagnosed with endometriosis, and he said that was the issue causing it. Surgeries, injections, and another pregnancy. My son was born when I was 31. Still stomach issues, but not as bad. For the first 2 years. And then issues again. I was diagnosed depressed, anxiety issues, stress. They blamed it on my divorce, having 2 kids, and working full time. So again, back to tylenol, gasx, and trying to live. In 2008, my daughter started choking on food, and then water. Took her to a GI. They scoped her and said she had an esophageal stricture, so they operated. Almost a year to the day later it happened again, they operated again. Another year went by, she was in College 3 hours from home and it happened. The doctor there diagnosed her with an achalasia, and wanted to operate. There was NO WAY I was having her operated on that major 3 hours away, so I brought her back to the hospital closer to home in the Suburbs of Chicago. The doctor took one look at her, asked me a few questions, flipped through her file and said “She doesn’t have any of those. I’m telling you she is Celiac”. What? So blood work and endoscopy it was. Her tTg’s were 143, and biopsies positive. She was Celiac. So I started researching. It was genetic. I had ALL the symptoms. Went to my doctor, told her to test me. She told me, and I quote “No. Just because your daughter has it doesn’t mean you do. It is stress.” So I called my daughters doctor who diagnosed her. He tested me immediately. Sure enough, positive. I took the results back to my doctor, slammed them on her desk and told her to go back to school and re-educate herself – never went back to her. So I went gluten free. But it didn’t end there. I still had problems, major problems. Took another 5 years after all of this and being told my many doctors, including doctors from the Celiac Center at U of C, that I MUST be eating gluten somewhere. I fought to have my tTg’s tested. They were >4. I was then told I wasn’t a Celiac then. UGH. NO, it shows I’m NOT eating gluten! Nope, now I was “lying” that I had Celiac Disease (albeit having previous blood work, endoscopy reports, gastric follow thru results showing Celiac, etc). It was my neurologist for POTS that sent me for stomach scans. Sure enough, I had MALS. Suffered for YEARS with MALS because no doctor would look further. Had angioplasty this last June and now I can eat without excruciating pain. This journey took me years of doctors (countless, nameless, faceless doctors). I would not give up until I got answers. No one should give up until they get answers. When doctors find one thing, they stop looking. I have since been diagnosed with over 14 other auto immune things. Surgeries, medications, etc. I am on disability now because of all of it. I continue to read and research every day. If they would have found my Celiac 25 years ago, would my health be this bad? Probably not. They failed me, but I will not fail my children. My son is 13 now. Genetically positive, but not active. I DO feed him gluten, and have him tested every 2 years to see if it becomes elevated. I refuse to put him on a GF diet “just because”. We watch, we wait. I stay on top of it. I print medical abstracts and bring them to our doctors (not FAD stuff). I have given a lengthy interview for our paper to continue to educate the masses, yet I still struggle with my own family accepting it, understanding it. It is a constant battle. I have hopes that our next generation is fully educated, and the fads, the comments, the negativity ends. All we truly have is hope. Dude, thank you for being you, and all you do. Our doctors suck, but our advocates ROCK.

    Reply
    1. 92.1

      Gluten Dude

      All I can muster after reading your story is HOLY SHIT!

      Reply
  93. 93

    Alyson

    That first story about the laxatives is just like mine, except they told me to take antidepressants to relax my bowel instead. 3 years later an endocrinologist said I did in fact have celiac.

    How on earth could 2 gastroenterologists miss a celiac diagnosis? Isn’t that literally their job? Has the world gone mad?

    Reply
  94. 94

    Cathy

    I don’t even know where to begin. I remember as a kid “not liking” bread. Or maybe it made me sick and I didn’t know how to communicate it? I kept having stomach issues and my mom told me I had a nervous stomach. She was told that was what was wrong with her. Doctors kept telling me that each time I asked. Then I started getting bad back pain, bad migraines, and panic attacks before the age of 19. By my mid 30s, I had severe neck pain and learned I had degenerating disks. It wasn’t until my mid 40s I finally learned I had Celiac. And the only reason I found out was because I had anemia and it didn’t make sense. I insisted on seeing a hematologist who put 2 and 2 together. Even after my blood work and biopsy came back positive and I went GF I still felt HORRIBLE. Fatigue, brain fog, inability to focus, etc. My GI told me only digestive problems exist with Celiac. I knew right then and there I needed someone who knew what they were talking about. I went to Dr. Green at Columbia. Because of the enamel issues with my teeth he knew I had Celiac before the age of 7. So essentially, every doctor I complained to about my stomach, aches and pains who wrote me off as a hypochondriac was wrong. 40 years of being wrong.

    Reply
    1. 94.1

      wheatfreeeee

      Wow, so many signs that doctors miss!! I hope dentists are aware now about enamel issues.

      I had panic attacks too throughout my youth. It was like being hit a lightning bolt, they just came out of nowhere. Very harrowing, especially for a child.

      It wasn’t until I was diagnosed a year ago and went GF, then was glutened in a hospital that I realized the connection. After a cross-contaminated breakfast my stomach cramped, my heart rate went from 70s to 104, and I went I went to lie down I had massive panic attack. Then my thyroid and body ached for a couple of weeks.

      I’m sorry for what you’ve been through and so hope you are much better.

      Reply
  95. 95

    Susan M

    People talk about having symptoms from an early age, and I understand that celiac can start out early. My story is the exact opposite. Growing up the only medical issue I had was lactose intolerance. I lived my life carefree where food were concerned until my mid 20s. One day I noticed a scaly patch of skin down on my ankle. I used all sorts of creams to get rid of it. I finally just left it alone since it was small and not bothering me. Then I started getting blisters on my feet and in between my toes. I thought it was athlete’s foot so I used all sorts of anti fungal creams. Before I know it, all the skin is peeling off my feet and leaking pus. I couldn’t wear any type of closed shoes and had to wear socks so I didn’t slip and fall. Finally, my boss, at that time, called her dermatologist and got me an appointment. She closed the shop, loaded me up and took me to the appointment. He gave me a steroid cream and pill. In the end he told me to try a gluten free diet to see if it helped. I was so relieved that I didn’t even bother to ask any questions. I called my mom later that evening and talked with her about it. Thankfully she had a friend that was very knowledgable and gave me direction. I have struggled the last fifteen years to eat a gluten free diet. It was extremely hard in the beginning since I was having to change my 20 year mentality of eating whatever I wanted. My doctor struggles haven’t emerged until recently. My reaction to gluten has progressively gotten worse these last couple of years. The doctors tell me I have to eat a gluten filled diet for six weeks before they can do the intestinal biopsy before they will plan a course of action to help with the flare ups. I have told numerous doctors repeatedly that I cannot eat a gluten filled diet for that amount of time. I cannot function when I eat gluten and I have a family to take care. They have just shrugged and sent me on my way. I did have one doctor finally do the blood test. The nurse called me and said it was negative for celiac. Thanks that was a big help. One of the biggest issues I have is the blisters, rashes, and eczema (or psoriasis depending on the doc) are not bilateral, and I didn’t start out with abdominal pain or any other symptoms on the inside. My symptoms started with my skin so I don’t fit their cookie cutter. I know eating a gluten free diet makes me feel better, but for peace of mind, I want to know is it really celiac or is it something else? Lately eating a gluten free diet doesn’t always help. Thankfully after 15 years, I found a dermatologist that was willing to listen. She did a skin biopsy and said we will plan a course of action once she has those results.

    Oh and let’s not forget the allergy doctor telling me he couldn’t test me for a wheat allergy. I have Graves’ disease and since Graves’ causes heart palpitations and I take a beta blocker, the allergy doctor said the risk was too great. He had actually lost a patient in the ER because she didn’t disclose the use of a beta blocker. While I appreciate him essentially saving my life by not testing, I still left his office frustrated because he told me me once I had my thyroid removed he would do the test. No thanks.

    On the bright side, my mom has been through the struggle with me and suggested to my dad to try a gluten free diet to see if it would help him. He has the horror story of the doc telling him he had a corn allergy. He has since virtually cut gluten out of his diet and feels so much better!

    Reply
    1. 95.1

      B

      It sounds like the testing in your medical history has been disjointed.

      Ideally, that first doctor would have done a biopsy for dermatitis herpetiformis, and encouraged you to get celiac testing at that time, before omitting gluten.

      All too often we’re told to “just try gf if it helps”, and this disrupts the formal testing process, leading to confusion about diagnosis down the line.

      So now it sounds like you’re in a tricky place regarding testing- you can’t tolerate the gluten challenge, and without it, naturally, your serum tests are negative, and the doctors don’t want to treat you as celiac.

      But it seems as if you likely do have the information you need. Unless I’m missing something, I don’t see how a positive celiac test would give doctors more information about how to deal with gluten flare-ups- the bottom line is to avoid cross contamination.

      I like the Celiac Center at Beth Israel Deaconess as a source for this- their book and website systematically discuss lingering symptoms and how to do a process of elimination to address them. The first is cross contamination.

      I hope your biopsy gives you some clarity. FWIW, I had skin problems in my 20s, while my gastrointestinal symptoms were mild-moderate. They came and went and were variously described as fungus, psoriasis, and eczema, but I think was palmoplantar pustulosis.

      Reply
  96. 96

    May Patricia

    Thank you for posting your stories! I am going through similar hell right now and it’s so helpful to hear that I’m not alone in this sea of sloggy doctors and horrible testing.

    I’m recently 26 and have been having horrendous issues for the past year and half: stabbing stomach pains, nightly nausea, vomiting, diarrhea, serious down days of fatigue and depression, mornings where I couldn’t remember to put the pot in the coffee maker and ended up with a fountain of caffeine on the counters and floors, aches, skin issues,etc. etc. These symptoms just popped up one day.

    I’ve seen many specialists and finally found one that believes me (I’ve been diagnosed at the ER, Urgent Care, and with other GP’s with the flu 7…. yes SEVEN times), but unfortunately it takes about 3-4 months to get appointments with him so it’s been a long process and still no hope.

    Scoped, ultrasounded, imaged, HIDA scanned, etc. Nothing came back abnormal. Been on 6 elimination diets, including the “anti-histamine” diet where you literally just don’t eat. Nothing has worked, but eliminating gluten and casein from my diet has been helpful with the stabbing pain. It’s now more of a dull ache always.

    No diagnosis in sight, medical bills up the wazoo, and mostly just exhaustion and frustration.

    Reply
    1. 96.1

      A

      Don’t give up! And dont blame yourself for your symptoms. Something’s going on, and you can figure it out in time and you CAN feel better.

      My symptoms suddenly worsened at 28 after surgery. I thought my world was ending. It was so hard to get any clarity from doctors. I really wish that I had trusted myself and pushed more. I wish I had listened to my instinct, guiding me to the answers. I’ve learned so much more about my health conditions now, and I’ve made huge improvements I never thought possible. It’s a long slog but progress is possible. It’s frustrating and bewildering while you’re in the midst of it, but your symptoms are real so it follows they must point to something, and with deliberance you can uncover that.

      Keep pursuing diagnosis and keep standing up for yourself!

      Reply
  97. 97

    Brenda

    Very grateful! This courageous man, Dr. Eitan is a healer, pathologist, herbalist, biochemist and naturalist, who immigrated from Jerusalem and who has committed his life to the service of helping people cure their diseases. In essence he teaches his patients how to use nature to take care of their bodies. i want to inform the public how i was cured from (HERPES SIMPLEX VIRUS) by Dr. Eitan, i visited different hospital but they gave me list of drugs, Zovirax, and Valtrex which is very expensive to treat the symptoms and never cured me. I was browsing through the Internet searching for remedy on HERPES and i saw comment of people talking about how Dr Eitan cured them from ALS, CANCER, HERPES, DIABETES and so on… when i contacted him he gave me hope and send a Herbal medicine to me through courier service that i took and it seriously worked for me, am a free person now without problem, my HERPES result came out negative. I pray for you Dr. Eitan. Am fully cured. you can also get your self cured my friends if you really need my doctor help, you can reach him now: dreitanhealingcentre212@gmail . com THANK YOU FOR YOUR HELP TO CURE MY (HERPES SIMPLEX VIRUS)AM SO GRATEFUL!

    Reply
    1. 97.1

      wheatfreeeee

      NO! Bad spam! Bad! Go away!

      Reply
  98. 98

    enoughisenough

    Even after I tell some doctors my diagnosis of celiac disease, they write in my medical records that my symtoms are psychosomatic meaning they are clueless about celiac disease. Aren’t doctors educated in school about celiac disease? Then if I suggest that they should research the symptoms (if they don’t believe celiac disease causes symptoms), they get mad. They should know that they are making patients mad.

    Reply
  99. 99

    Long row to hoe

    Hello I have only read a few comments to realize I found home. After 42 years it’s a sigh of relief. A long time coming. Who helped me? my husband, my cousin, and I can’t prove it but I think my new co-workers. Yes talk about being a private person a tight group of advocates in town knew and advocate to get you the full correct diagnosis you gave up on years ago ? This group has done more for me than I would have imagined. The validation of your not crazy, your misdiagnosed, your sick, priceless. They saved the rest of my life from further worst case scenario multiple autoimmune illness. I have a chance for the future decades of stabilized health. I got brought to rock bottom because they all know I would not eat gluten. It explains a lifetime of mysteries, frustrations, misdiagnosis, and pain. Similar to many of you , scratch your head. try to put her in a box that fits. overly high urine output (poor overworked kidneys), IBS constipation, physical therapy for muskoskeletal myalgia, uti treatment without clear infection results, sinusitis, appendicitis scare, problems with meds, stress, panic, depression, anxiety ,gastroenteritis, puppp rash, shingles, GERD, rashes, inner ear infections with balance issues, finger swelled and broke my ring band, then my brain fog and memory, and issues, blurs together but its all gluten . I am learning now casein and coffee similar in molecular structures to my receptors off the list too. A lifetime of gluten exposure until 3 years back my own body scared me more than ever. I took my husband’s lay term advice- just stop eating bread! Yes my husband diagnosed me , decades of western medicine missed. I tried 3-4 separate times to get help in life -decades apart. My husband spent years throwing out meds that didn’t agree with me or failed to fix me, the list goes on. Anything the poison was in he moved out because it hurt/ changed me. But in my mind I had IBS and was told I had to figure out what I could eat and not eat. I came from a family with nurses not even when I had a cousin diagnosed with Celiac could that be my case. No it was as simple as me accepting that’s just your body deal with it, exercise, lose weight, take your meds, and get your colon checked and most of all shut up. Not your an atypical Celiac never crossed anyone’s mind except my husband.
    I finally was getting tingling in my arm and cramping toes, and congratulated on pregnancies that didn’t exist too often. I was vitamin d deficient and folic acid deficient but not anemic. I was not typical. I long ago accepted the gi issues, the constipation, the mood stuff cause it was explained away as being just me . No one before my husband stated the culprit.
    One day I listened to the man who knows and loves me. My lifetime advocate . I stopped bread. If I ate one piece of bread I blew up like the Michelien man . He was right bread bad. I then read a research study from U of I that those diagnosed in past with IBS are often misdiagnosed and are really Celiac. I tried gluten again and knew. The feelings are mixed as you can imagine. Anger, hurt, frustration years etc. Well here I am present moment a Celiac without a diagnosis now seeing a specialist . I refuse to eat gluten. I stated I would lie if told to do so. I only can move forward and won’t repeat the painful past. If you are wondering and anyone who is an advocate for you tells you no bread -seriously consider ignoring the years of misdiagnosis’ . just stop for 2 weeks it will become 2 months and you won’t miss it you’ll know. I am grateful to my husband 4 decades of my life were damaged by gluten, luckily he found me, loved me, and saved me. To say I am grateful and he is the love of my life is an understatement . He is my knight and shining armor.

    Reply
  100. 100

    Leslie

    I expect I have been reacting to gluten for about 4 years now, but only recently started having significant problems with digestion. My doctor diagnosed constipation and suggested laxatives, which only partly helped.Still much bloating and stomach pain. Went in for a second visit and doc prescribed tranquillizers. Sigh. Decided on my own to try going gluten free and immediately my stomach problems disappeared. After reading on-line, realize that I might be a likely candidate for gluten sensitivity – hashimoto’s thyroiditis, low B12 and osteoporosis. I won’t go back to doctor – not much point. Just as easy to accept the evidence and learn to eat a bit differently.

    Reply
  101. 101

    Ray

    A cynic might also think, “Gee, it must be nice to be male and have stomach pains.” I can’t tell you how many years I was sick. My first time I remember getting sick, I was around 10 years old. I spent the night with a friend and we went out for Italian food. My family would have just gone home after that. But this family wanted to stop at a park and take a walk. Even though my stomach hurt, I was too shy to ask to go home. So on the way back from the walk, I got sick in their minivan. The mother made me clean the seat the next morning.

    For years after that, I told doctors that I got sick a lot after I ate. The most common response, “Are you stressed?” In college, I was getting sick more and more. It stopped me from being able to date (have to go home right after dinner!) and go out with friends. In my late 20s, I developed the classic celiac rash. I went to the doctor who asked, “Are you stressed?” and put me on an antibiotic for a non-existent bladder infection.

    By my 30s, after seeing several more doctors, all of whom asked me, “Are you stressed?”, I finally stopped eating gluten on my own – feeling hopeless, thinking this gluten-free trend surely wouldn’t work. But it did. Now, doctor’s write me down as “gluten sensitive” because I haven’t been truly “diagnosed” with celiac… just stress. It’s infuriating.

    So, kudos to males for being able to be taken seriously at a doctor’s office. One can only hope that young girls, young women and all women can receive the same benefit someday.

    Reply
  102. 102

    Y

    Selling something? Shoo!

    Reply
  103. 103

    Elif Demirel

    I had tinnitus in both ears for six years with a high pitched two tone sound; the noises are constant and have learned to ignore the ringing. Later, another sound was added, a deep tone that has a sporadic rhythm that mimics human speech. It varies from soft and muted, to painfully clear, and loud. Have tried sound machines, ear plugs, my hearing aid, and medication all to no avail rather I have a difficult time sleeping. Lately I was directed to a Doctor called Alessio on internet who provided solution to the problem. Do not be discourage, there is hope for you, it is a permanent cure to Tinnitus. Contact him with this email italianhealthresearchcentre@outlook.com

    Reply
    1. 103.1

      A

      Spam? I detest spam with the same vengeance as I do quacks. Shame on you for invading a quality forum for chronic illness.

      Reply
    2. 103.2

      Gluten Dude

      Yeah…you’re done here. Go spread your crab somewhere else. Or actually…don’t.

      Reply
  104. 104

    Christine

    I’m so @#$@#%$%^$$#@ tired of doctors and psychologists and specialists in my child’s life. I don’t understand what level of unimaginable arrogance a person has to have to sit in a room, get up in my kids face for 10 minutes, irritating us both to death, and then conclude without so much as a backstory that he’s autistic, or ADHD, or developmentally delayed. And the burden of proof is on ME. I have to prove him innocent, they just get to say “he’s broken” without any real evidence. Ten minutes isn’t enough. Turns out after dozens of second opinions later, there’s nothing wrong with him but a little speech delay which may be attributable solely to being male and introverted and not an actual problem. And just today we had an optometrist appt and the woman got all up in his face, showed him images I told her there would be no chance he could identify and flitted around the room like a fairy on crack, jabber-jawing and talking so fast I could barely understand her, let alone my 3 year old. She’s decided he’s near-sighted even though I explained to her that none of his behavior in every day life has ever indicated this. She seemed genuinely surprised for a moment when I told her that he does not in fact have to walk up and stand in front of the TV to see elmo, he’s perfectly fine on the couch and absorbs it all anyway. Then she brushed it off and told her sectretary “we’re not gonna charge them but he’s definitely near-sighted.” The secretary doesn’t need to know that, nor did the 12 other ppl in the waiting room, so it was clearly a jab at me. So now it’s time to go see a pediatric optometrist and get yet another second opinion which will likely erase her opinion, as it always has in the past.

    Trust your instincts. Don’t let these hammer people convince you everything is a nail too. Unless you already suspected that it was a nail, remember you’re talking to a hammer. Fight back. It’s okay to second guess them. They aren’t deities for goodness sake. And they are trying to make money, so if you can book a double appt if you have a kid or they will do there best to shuffle you out as fast as possible. I don’t trust anyone anymore. I rarely hate people, but I’m beginning to hate these people. There’s nothing wrong with my kid, and if you spent more than 30 seconds paying actual attention to him instead of confirmation biasing the hell out of us both, you might notice.

    Reply
  105. 105

    Meg

    15 years… half my life! Not only that, but i daignosed myself and had to force the doctor to test me. I have dhurings disease as part of celiac, 15 years of a skin rash known as the devils itch that covered half my body with blisters that were constant and moving. I got diagnosed with a rotation between psoriasis, exzema, dermatitis and ring worm -_- years of applying steroid cream, buying every cream possible to try and help, changin my clothing, all my wash stuff to fragrence free natural products. Obviosly none of these worked! I researched and reaearched and finally saw a photo of skin like mine, but the doctor had never even heard of celiac related skin conditions and blew me off, so i pushed for a blood test and yeah my levels were off the chart :( oh and for years my stomach problems had been put down to me being bulemic…. now im on a drug called dapsone for the rash and strict gluten free, had to buy the drug online though as my doctor wouldnt prescribe it as hed never heard of it… so im not getting the blood tests your supposed to have with this drug to monitor your blood and kidneys. this is the cut down version but as you can imagine, i have all sorts of illnesses relating to the celiac and im so angry i was in agony for so many years and it still feels like im on my own with no help really. Im diagnosed, but left to work out the rest on my own, even though this is an autoimmune disease and serious!

    Reply
  106. 106

    Web Directory Omnicare

    Woah! I’m really loving tthe template/theme of this website.
    It’s simple, yet effective. A lot off times it’s difficult to get that “perfect balance” betwween usability and visual appearance.

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    Excellent Blog!

    Reply
  107. 107

    jackie

    I am glad I see others go through this. I am in the group of skepticism on whether or not my symptoms are celiac or something else. Growing up I suffered in school due to always having stomach issues (i.e gas, bloated beyond belief, etc) and I would have to leave class all the time, and was too afraid to sit near the front. I had major anxiety, and times where I had major abdominal pain. Nothing was very serious until I had my daughter last summer. Since having her, I have had debilitating lethargy and fatigue, joint pain, and major dizziness. It started a week after I had her via c section. I thought I was suffereing from post-surgery issues so I went to the ER. I was told vitals were fine and to go home. A couple months later, I couldn’t get ahold of my dizziness and headaches and “brain fog”, went to the ER, told I was fine. I went to a new primary physician who informed me after bloodwork that it is safe to say I have “lymes” although I don’t have a tick bite. He put me on an antibiotic, I still felt bumpy lymph nodes and the same symptoms. I returned to the same office, NP ran blood and said my lymes disease is gone, and that he actually wouldn’t have labeled me as lymes before. I said what??? I decided to go to GI since I never gone and knew I always had stomach problems. I went, and they ran blood and found I tested highly positive for Celiac, I said I can’t afford a biopsy at the time they said no need. I was told I was lactose intolerant, and to eat gluten free. A year later, I still feel sick and can’t stop getting contaminated EVERYWHERE. I took it upon myself to see a neurologist for pins and needles in hands and feet, and for blurred vision and major brain fog. He claimed depression and low iron and prescribed me iron infusions ($$$$). After that, i went back to the primary who said well why are you following up here when he recommended you follow up with him? I said, because my symptoms dont apply to neurology as i thought. She said welll you will need to go back there and follow up. Now today, a new GI doctor tells me today he worries if my body isn’t accepting gluten free diet then I could be in the minority sub category of people with celiac disease who have to live with the symptoms and conditions even gluten free which also is the kind that HEIGHTENS LYMPHOMA in patients. So, two years and I have no idea what I actually have, I don’t lose weight, and I don’t get extreme diarrhea.

    Reply
  108. 108

    Meg

    Lucky for me, we caught my diagnosis fairly quick. I had diareah everyday for 2 months along with other worsening symptoms. Decided to see the doc. They did a blood test and it was positive for celiac. Then told me that they would not give me advice or help me in any way until I am diagnosed via endo biopsy and I must pay an extra $800, on top of the $300 that I spent for the lab tests. They said it will be weeks until they could get me in for the biopsy, and in that time I MUST continue to eat gluten (voluntarily poison myself), just for them to tell me what the blood test already did. It was the worst couple weeks of my life. 3 weeks went by until I got my final positive diagnosis for celiac. NO SHIT! And at that point they were willing to refer me to a nutritionist. Thanks a lot (sarcasm). I do feel much better now being 100% gluten free.

    Reply
  109. 109

    Donna Lynch

    I never had any GI problems. In my forties I started having bad headaches and soreness on my right side. As the years passed the headaches were worse and more often. Then in my late fifties I started losing weight and was still battling headaches and muscle pain. This kept on for a few more years Then when I was in my early sixties I happen to notice a sunk in place on the side of my right leg. Went to an orthopedic doctor and he sent me to a neurologist. This guy did a few test and told me I just crossed my legs to much and caused the muscle to atrophy. I continued to have headaches without a any diagnose until one was so bad and lasted for several days. I ended up going to the ER where they did an CT scan which didn’t show anything. I finally got an appointment with another neurologist who did her own test because I had developed more atrophy in other muscles. I was then sent to see a specialist in Houston. They did more test including a muscle biopsy. Yep, you definitely have muscle loss but we don’t know why. When I was 66 yrs old I had lost down to 115lbs,my husband fussed at me for not eating. I was eating candy bars and other high calorie food. One night I woke up having trouble breathing. We went to the ER and they admitted me. I even had a stress test the next day that I passed. Nothing wrong with my heart. The next day when the doctor came to discharge me he stated I had a very low iron count and I must have a big bleed in my stomach or intestines. So two week later I had an upper G I study. The doctor took a biopsy of my small intestines ,called me with the biopsy results and informed me I had Celiac disease. I knew about Celiac and I told him I don’t get sick when I eat wheat bread or such. He said,”Well you have Celiac and you have no villi which has caused you to not only loose weight,but to not absorb any of the vitamins or such. When I went back to my Neurologist she apologized to me and said doctors didn’t realize that Celiac could cause Neurological problems. Celiac had caused me to have atrophy in my legs,hands,right side of my back and this was the cause of my headaches. I am now 73,still suffer from headaches when I do something to stress the muscles,have soreness in the muscles mainly on my right side. Celiac is a terrible disease,whether it affects your tummy or your muscles and head. I did insist that my 38 year old daughter get the 6 antigen test for Celiac and guess what all 6 were positive.At least one good thing of my diagnose was keeping my daughter from suffering as I had. She had no tummy trouble either when she ate things full of wheat, rye or barley.

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  110. 110

    Melissa

    I haven’t been officially diagnosed yet but after suffering for over 20 years, I am finally being tested.

    My story goes back to my early teens. My symptoms came on one by one, and throughout the years they seemed unrelated but now everything is coming together and its finally starting to make sense.

    I started getting migraines at the age of 12. At the time it was attributed to puberty and I would eventually grow out of it. I was told to take a ‘cocktail’ of two Advils with one Tylenol and sleep it off in a very dark room. No 12 year old wants to spend 3 days in a dark room feeling like your brain is going to pop right out of your head. For the record, I’ve never “grown out of it”.

    Fast forward to when I was about 15…that’s when the stomach problems started. I would have debilitating cramps in my lower abdomen which would be followed by explosive diarrhea. My mom brought me to the doctor who told me I probably had lactose intolerance. So I cut dairy from my diet, but the diarrhea continued. When I returned to my doctor, he told me it was all in my head. I really didn’t know what else to do, so I lived with it.
    Around the same time, I also started having problems with anxiety and depression but that was largely ignored until later.

    My joint pain started when I was about 19-20. By this point I had a new doctor. She told me that I probably had early onset arthritis and there was not much she could do. Take advil, stay active, and try things like yoga and stretching. I had also mentioned the chronic diarrhea and she told me it was probably IBS and to eat more fibre to bulk up my stool. Eating more fibre just made it worse so I just started taking immodium on a daily basis (though even that didn’t fully stop the diarrhea, it just made it less frequent).

    This is when my anxiety and depression spiralled out of control. I became agoraphobic, couldn’t go to school, and was having suicidal thoughts. I was loaded up on various medications that I still take to this day. I’ve done multiple rounds of therapy with several different therapists and had basically just accepted that I was someone with mental health issues. I also started having high blood pressure problems in my mid-20’s which was simply dismissed as coming from the anxiety and “white coat syndrome” because it was not possible for a 25 year old to have high blood pressure.

    These issues continued all throughout my late 20’s and into my early 30’s. When I was about 32 I decided it was the year I was going to get healthy. I found a new doctor and explained that I wanted to get healthy and wanted to deal with my debilitating joint pain, the diarrhea, the depression and anxiety, the migraines, etc. My stomach had starting becoming distended and I looked about 7 months pregnant. The diarrhea and joint pain was getting progressively worse and I told him those were the things I really wanted to address first. He completely dismissed me, told me it was all in my head and that I needed to eat more fibre, exercise more, lose weight, see a therapist and eat less fast food (which I rarely ate, so I have no idea how he came to that conclusion).

    In October of that year I woke up one night with the worst pain I’ve ever experienced. I was feverish, vomitting uncontrollably, diarrhea, and literally screaming in pain. My boyfriend drove me to the hospital. After seeing the triage nurse I was admitted within 30 seconds. They were fairly certain my gallbladder was infected and about to burst. It was confirmed by a CAT scan. It was so infected they couldn’t even operate right away and I was pumped full of extremely strong antibiotics for 3 days until they could operate.
    This is when things REALLY started to go downhill. During the two years following the surgery, all my symptoms exploded. I could barely get out of bed due to extreme fatigue, and I’m now having diarrhea up to about 10 times a day. The joint pain is so bad I can no longer take a flight of stares, I can’t open jars, I can barely walk, and aside from going to work I spend most of my time huddled into a ball on my couch. I’ve recently been diagnosed with hemochromatosis despite years of dealing with anemia. I have hypothyroidism. I am 35 and I feel like I’m 90 years old and dying.

    My boyfriend and I decided it was time for me to turn to a private practice, regardless of the cost. I’m in Canada, and the public system has failed me for 20 years. All this time and not ONE of my doctors referred to any sort of specialist. It took only 1 visit with my private doctor for the word “celiac” to come up and since then I’ve been referred to a variety of specialists. My gastroenterologist immediately ordered blood tests and advised me to go on a gluten-free diet after getting the test.

    I’m still waiting for the results of the test, but after 4 days of being gluten free I already notice a difference. Instead of using the bathroom 10 times a day, I am down to needing to go only 1-2 times a day. My boyfriend has noticed that I have a little more “pep” today, and its the first time he’s seen me with some colour and life in my face in years. I cried the other day when I had my first normal bowel movement in over 20 years.

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