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.
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.
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!
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.