Celiac Awareness Must Start With the Medical Community

celiac misdiagnosis

As we wind down Celiac Awareness Month (and what a month it’s been!), there is one aspect of our disease that seems to get overlooked far too often: the role the medical community plays.

Or perhaps I should say the lack of the role it plays. Or the awful role it plays. Or the disappointing role it plays. You get the picture.

Take a look at the Doctor Horror Stories you good folks have shared on this site. It’s disturbing to say the least.

I am going to hand the blogging duties over to our own beloved Irish Heart today, who shares her incredible story of misdiagnosis after misdiagnosis and how she came out shining on the other side. This is a story that must be heard and must be shared.

The change starts with us.

Irish Heart…the floor is all yours.


Leave the gun. Take the Canoli. (The Godfather)

By Irish Heart

We’re a nation in love with wheat. We love our gluteny goodies: bagels, donuts, pasta, croissants, pizza. cookies.

It’s also why we are often fat and sick and in pain. But the doctors will tell you there’s nothing wrong with you. At least, nothing a pill won’t “cure” anyway.

So they load us up with acid reflux meds, blood pressure pills, heart medications, cholesterol-lowering drugs, pain medications, anti-anxiety meds, sleeping aids, migraine medications, Lyrica for nerve pain and various anti-depressants…and send you packing.

When you say, “But, these are not helping, doctor; they are making things worse!”, they make you feel as if you’re crazy and in need of psychiatric care. It must be “all in your head”.

As I was dying a slow death for nearly three years, I wrote in my journal many times: “I am forgetting things and it scares me. I feel so sick, tired, and I am in horrid pain. I BURN from head to toe. I cannot sit, stand, walk or lie down. I am jumping out of my skin. What the hell is going on? I’d rather be dead than live like this!”

And I cried a lot because of the bone/joint and muscle pain and burning nerve pain. I screamed to the walls, “Why can’t they help me?” Doctor after doctor after doctor. I lost count of how many times my husband patiently drove me to appointments and then held me in his arms after every one of them. We’d been dismissed once again. I even tried homeopathy, biofeedback, months of myofascial release, acupuncture, even rolfing—out of sheer desperation.

Anything to make the pain stop, but NONE of it helped. Thousands of dollars spent on nothing.

Eat MORE whole grains—you need fiber, I was told by the GI’s Nurse practitioner…So, I did.

And my brain fritzed and my nerves fried and I went downhill.

MRIs, EKGs, EMGs—all normal. (but those tests do not find small nerve fiber neuropathy, which 16% of celiacs have)

My bones and joints and skin burn like mad.
Approximately 37 million Americans have arthritis (12%)

I was told I had GERD and IBS for 12 years.
Approximately 60 million American’s–20%–have IBS and chronic digestive problems and 120 million get heartburn (40%)

I wonder how many people are given a Fibromyalgia syndrome or Chronic Fatigue Syndrome DX…and quite possibly left undiagnosed for celiac? My new GI doctor and I have discussed this and we speculate…possibly millions??.
Approximately 4 millions Americans–1.5%–have FMS and between 30-60 million have severe fatigue 10-20%.

I wonder how many people are in mental health wards because their brain function was affected by celiac. I did not even tell people half the stuff I was experiencing for fear they would think me mad.
Approx. 30 million Americans suffer from depression—10%.

Later, when a few other celiacs told me they also had these same bizarre symptoms—burning skin, walking sideways, tinnitus, hallucinations, blurred vision, ataxia—I felt validated. And sad for them because they were told they were “making it up” (one was told she had Munchhausen syndrome and there was “nothing wrong” with her celiac son, either.)
Neurological symptoms affect up to 10% of celiacs.

I suspect the dozens of doctors I saw thought I was just a crazy, menopausal woman.

I am pretty sure they thought I was making things up. I had many of them give me the pat on the back and the suggestion that I needed to do volunteer work or seek counseling.

Really? Who “makes up” a 90 lb. weight loss?? hair loss? vitamin deficiencies? dehydration? migraines?
45 million Americans get headaches (15%) and 28 million get migraines (9%)

I had blood sugar irregularities, found myself sometimes gasping for breath and was given an asthma “puffer” and my heart raced and pounded and skipped beats like mad (but my EKG and holter monitor results were normal—repeatedly)
16 million have diabetes (5%)
12 million have chronic bronchitis (4%)
17 million have asthma (5.5%)
61 million have cardiovascular disease (20%)

Do you think these numbers mean anything?

Yes, me too. And I am going to say it: We’re a nation of sick people because of our standard American wheat-filled diets and because of the medical profession’s inability to recognize Celiac Disease (and Non-Celiac Gluten Intolerance) for what it is.

“The prevalence of celiac disease in the United States has been estimated to be as high as one in 133 individuals. At the same time, only one in 4,700 individuals have been diagnosed with celiac disease. The average delay in diagnosis for a person with symptoms is 11 years. On average, a child will visit eight pediatricians before being diagnosed with celiac disease.”

Celiac is the result of genetic and environmental factors. Predisposed individuals have the disease “triggered” by eating wheat gluten—and the first thing we get as teething babies? Crackers. Cheerios. Zwieback cookies. We are doomed from jump street.

Celiac is a beast that is bigger than anyone in the health care profession wants to admit.

And for the life of me, I cannot understand why.

Doctors told me:

  • You’re just sad, anxious and depressed (not my personality at all)
  • You’re stressed out (ya think?)
  • You’re anorexic (me? I was FAT! but, then I wasn’t. Oh, how I used to love food.)
  • You’re just grieving (my beloved Dad had just died)
  • You have a thyroid disease (no, I do not)
  • You’re menopausal (I had a hysterectomy years ago)
  • You have Fibromylagia (nope)
  • You have spondyloarthropy –take methotrexate (definitely not… and what? no way!)
  • MS? Lupus? and maybe 10 other possible diseases?

No, I don’t!!! (I said to myself).

I heard “take these drugs” – see you in six months.

I tried all of them because the doctors “said so” and I had horrible side effects from them.

I heard “Get a scooter & accept your fate!!” (no, I won’t, I said.)

And I heard this one too: It’s “idiopathic”.

No, it isn’t. It had a REAL CAUSE. GLUTEN and CELIAC DISEASE.

I had to undergo extensive dental work, several surgeries, lost my gall bladder and I have a few AI issues—osteoarthritis and osteopenia among them—and the joint/muscle pain I suffer contsantly has resulted from YEARS of being undiagnosed.

I am childless because no one thought to test for that when I kept miscarrying over and over and infertility treatments failed.

With 25+ years of misdiagnoses comes a lot of collateral damage.

But I am alive and I try to reaffirm to others who are seriously ill and losing hope that it is not “all in your head”.

You are not crazy. I believe you.

And it is essential that doctors LOOK at all these symptoms and see that it could be Celiac because left undiagnosed, more AI diseases may well develop and the chances of death from celiac is very real.

“Untreated celiac disease can be life threatening. Celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders. Untreated celiac disease has also been linked an increased risk of certain types of cancer, especially intestinal lymphoma.”

“Increased mortality rates in those with celiac disease are due to an increase especially, but not exclusively, in intestinal lymphomas. Also, other gastrointestinal cancers seem to be more frequent and contribute to an increase in the death rate for those with celiac disease.”

However,the good news is…if you are diagnosed and go on a gluten free diet, your chances of this happening go down to the same rate as anyone else! And since my DX and starting a GF diet, I take absolutely no medications. I do not need them.

Those “meds I would have to take for the rest of my life”? Hogwash.

Doctors need to stop symptom-treating and start identifying the underlying cause. It’s just that simple.

Oh, we need Celiac Awareness all right. We need it in the medical community most of all.


Dr. Stephen Wangen. Healthier Without Wheat
Marios Hadjivassiliou, MD, Neurologist at Royal Hallamshire Hospital in Sheffield, England.
University of Chicago Celiac Disease Center.

Gluten Dude: The mobile app that puts your safety first!

All the tools you need for a simpler gluten-free journey, brought to you by a passionate celiac disease advocate who understands the challenges you face.

Find Gluten-free Restaurants

Thrive with Celiac Disease

Subscribe to the Blog

Please enter a valid email address.
Something went wrong. Please check your entries and try again.

Let's Connect

Topics of Conversation


119 thoughts on “Celiac Awareness Must Start With the Medical Community”

  1. Irish, I think we are soul sisters, you and I… you just walked down every major diagnosis I had been diagnosed with and described my life for the past 43 years. Let me throw in a few more: juvenile rheumatoid arthritis. Bipolar disorder. Insulin resistance. Chronic inflammatory thyroiditis. I was miserably fat and unable to lose weight. I had major neurological and “psychiatric” problems. I had chronic joint problems that had been diagnosed as “chronic debilitating bursitis.” I had repeated rashes and allergies I couldn’t explain (many of which went away after going gluten-free, by the way). But unfortunately what is true for us is also true for many sufferers of the other autoimmune diseases. Because they are so poorly understood, the assumption is made that they are not real. So false – and so cruel. Thanks for sharing your story.

    1. So sorry, Claudette. πŸ™

      and I am afraid we have many soul sisters and brothers out there and if just one person reads this and says:
      “holy crap–that sounds like me!”‘, then maybe she/he will get tested and start healing, too.

      I’d like to add this list of Celiac symptoms and RELATED Disorders from the Univ. of Chicago Celiac Disease center for people who may not be aware of the far-reaching consequences of CD:


  2. Sue in Alberta

    Irish Heart, I am so sorry you had to suffer for so long. So much of your story is my own and I know many others as well. In this case, misery doesn’t love company.
    In North America, the medical profession treats symptoms not the root causes. There isn’t the money in curing the diseases. I have worked hard at not becoming entirely cynical because that too can be detrimental when seeking help but it’s tough not to be after years, no decades, of being blown off. I’ve always framed it this way. Every time a problem is presented to a doctor and the results aren’t clear, the patient’s “whack factor” goes up.
    A few labels handed to me were “Extreme IBS with symptoms out of that spectrum”, “Extreme Acid Reflux” and one of my personal favorites, “NUD” or non ulcerated dyspepsia!!! Sounds like something out of a freaking Jane Austen novel!!! WTF Turns out I have Celiac plus several food allergies, dairy and eggs being a couple. I was just shy of 50 when I got to the bottom of the problem 3+ years ago. This was after a 12 year stretch of actively pursuing my “gut” problems in the system. I should add the I too had ongoing dental problems, hysterectomy,etc.
    As for meds, I got the same 50 bullsh**ts so many others got. I’d leave the doctor’s office feeling defeated and still so sick, with another prescription to fill. You may not want to take it but when a body is so beaten down and there doesn’t seem to any other option, you try it and surprise, surprise, to no avail.
    I have never publicly written about my experience. Friends and family all know and now see me healthier then I’ve ever been. Oh but this disease is a twisty beast, isn’t it. The most obvious symptoms have abated but there’s still the unexplained stuff that can come out of nowhere. That’s not even taking into consideration the sheer amount of time and energy (and funds) it takes to prepare safe food.
    I have accepted all of this. I figure it would be like lamenting the fact that I’m not 6 feet tall. But, sometimes it can be so lonely and that’s when being in touch with people who are on the same path makes it a bit smoother.
    So, on that note, I’ll just say that I’m grateful to have found this community because that’s what we are – a community.

    1. “I figure it would be like lamenting the fact that I’m not 6 feet tall.”
      I hear that—longer legs would have been nice, I wanted to be a Rockette πŸ™‚

      Sue–the reason I am so unabashedly and unapologetically vocal about celiac and what it can do to the body is because it helps me make sense of the horror that my husband and I went through as I was dying a slow death for 3 years.

      I figured out what I had myself.
      Bottom line: We have to be our own best advocates.

      And Sue, you are never alone πŸ™‚

  3. Shelly Valente

    When I read this article, I have to think of my Dad that passed away in 1998. It was in about 1955 that he started having all the symptoms and related diseases that go along with celiac disease. He spent the rest of his life spending all our family had going from the small town practitioner to some of the most well respected hospitals in Manhattan. We never knew it was the morning toast, noodle soup at lunch and pasta for dinner that made him sick. It wasn’t until I found out about three years ago that gluten is my problem and my sister’s that I understood what made my father sick for so long. It was unfortunately too late for my Dad. I would like to say that it was doctors that helped with my discovery but it was actually a magazine article that opened my eyes and thankfully for the Internet, FB and so many other ways to learn about gluten intolerance. I had to force doctors to test me. I just wish I had my Dad back for one day to dispell everything my Dad was told by the medical community.

    1. I just cried reading your thoughts, Shelly because my beloved Dad also suffered for many years (one of my first memories of him is him swigging Maalox every night before bedtime) and he had dozens of blood transfusions for tanked hematocritcs and anemia the last nine years of his life. He was always cold and itchy and his eyes watered like mad and he never complained. Eventually, his kidneys failed.
      Do I think he was a celiac? Oh, you betcha.

      Why couldn’t any of the doctors at the prestigious Lahey Clinic see these symptoms as celiac? I had to stop making myself sick thinking “if I only knew back then what I know now well, he may still be with us”.

      My goal now is to educate others about the ramifications of undiagnosed celiac….. so others do not suffer needlessly for years..

      1. IH, thanks for sharing your story. I have said this before, and this is a good opportunity for me to say it again. My mother died from complications of carcinoid cancer. A gut cancer. I am convinced she got this rare form of cancer from undiagnosed celiac disease. No one could convince me other wise. As she aged she was eliminating different foods from her diet, b/c she would either get mouth sores or upset tummy. What did she eat to calm her stomach? Eggo’s, crackers, noodle soup. It boggles my mind to hear all of these stories of un-diagnosed “brothers and sisters.” I too went un-diagnosed for over 25 years. After my mother died, I thought I must have carcinoid cancer too, b/c I had all the same symptoms my mother had. What a scary time that was for me. I got tested for carcinoid and thankfully I was negative. Thank God, I confided in a friend about my symptoms and she told me, you sound like you have what my grand son and son-n-law have; celiac disease. I had never heard of it before. Finally at age 55, (March 2012) I was diagnosed, b/c I asked the gastroenterologist to test me for celiac disease. All thru the years I have had barium enemas, colonoscopies, CAT scans, stool samples…..was told I had IBS b/c the drs. could not find anything wrong. Sometimes I would get these itchy blistery bumps all over my chest, and the dr. told me I had shingles, but it did not hurt. I questioned him about it and he said I must have a mild case. Well, for all of you who have dermatitis herpetiformis, you know that is what I had. I often wonder why the dr. did not have a biopsy done on that rash.

        I was depressed a good part of my life. I even ended a marriage. I realize now it was from my depression that I could not cope with some “normal” differences we all have with our mates. I figured this out recently, b/c I am seeing me more clearly now, and have joy again. I remained close friends with my ex, and I am grateful that I was able to do that, he died in 2011. It is extremely profound for me to know that celiac disease was causing me depression. Not only did I alter my life dramatically, but someone else’s as well.

        With that said, this is probably the most complicated illness of all illnesses.

        Thanks Gluten Dude for letting us speak our mind and helping to get awareness about celiac disease out to the public.

        1. Oh Jules,
          Every time I hear about someone’s parent dying of what was likely unDXed CD, I just tear up. Makes my heart ache to think of anyone
          who has gone before us too early and unnecessarily because of this damn disease. So sorry, sweets.

          As for how we may have “behaved” in the past, I will tell you what I have told others who felt they may have been gluten-headed grouchy for so long—How could you possibly have known? Your body was ill!
          Give yourself a break over that one, Jules. xx.

  4. This is just horrible! It’s pretty much the same thing I went through for years before diagnosis. I wrote about my story on my blog, but after reading this I remembered so many more symptoms (acid reflux, skin pain, the list goes on and on) that I had that doctors kept trying to “fix” with more and more meds! Nobody should have to live sick day to day. And when you go seek help, you should not be made out to sound crazy! I know I felt crazy there for awhile! It makes me happy that more and more people are getting proper diagnosis and speaking out about this disease!

  5. Irish Heart, Thanks for the wonderful blog post today. I have definitely heard many of the same things from doctors that you have. Once they run out of things to test, “it is all in your head” seems to be one of their favorite lines. I was also accused many times of “hospital shopping” or “doctor shopping.” At a hospital I was once told that they were discharging me because they couldn’t use any more hospital resources for me… I have had many diagnoses, but rarely did medication seem to help. I was diagnosed with Fibromyalgia and the only medication combination that seemed to help for a while was Cymbalta and prescription pain pills. I also am diagnosed Crohn’s disease. Humira seemed to do the best for keeping me out of the hospital for a year, but I ended up needing a bowel resection in December of 2011. My gastroenterologist did biopsy for Celiac, but it came up negative and they weren’t concerned about Celiac since I biopsied positive for Crohn’s. Other health problems included (many of these persisted even while on medication for Crohn’s): migraines, osteopenia, systemic inflammation – sometimes so severe that I had trouble and would be crying just trying to stand up, yeast infections in my esophagus, UTIs, vaginal infections, kidney stones (had to have surgery to remove), ovarian cysts, food allergies, malnutrition, bronchitis, restless legs, sleep problems so severe I was diagnosed with narcolepsy, etc. None of my doctors suggested trying to go gluten free and the only guidance I got for diet about Crohn’s disease was to avoid nuts and raw fruits and vegetables. Which left a lot of breads and processed foods. In the past year I started seeing an acupuncturist and a functional doctor. They both performed food sensitivity testing which showed sensitivity to gluten off the charts and suggested I remove all gluten from my diet. What a difference! I’m not coming down with infections every time I turn around and my pain level is much improved.Though I still am working on many issues, I’m no longer on prescription pain pills on a daily basis. I’m still in the learning curve and figuring out ways to avoid cross contamination in a house full of gluten eating family members. Both Celiac and gluten intolerance need to be taken more seriously by the medical profession. Quality of life is extremely important. Pain can make everyday seem like a curse instead of a gift. I’m so grateful to be dealing with this in a time where the issue is being talked about and the internet exists to research.

    1. I have a family member with Crohn’s and I know how much she has suffered through the years. She’s a warrior, for sure.
      All your symptoms sure sound like gluten intolerance to me.
      Glad you are feeling better and I wish you continued healing, Theresa.

  6. It was when I lost my gallbladder that I was diagnosed. If I hadn’t gone down that particular road with emergency surgery I am quite sure I would either be dead or on death’s doorstep today.

    After going gluten free I have had other issues crop up, and yet my doctor INSISTED on symptom treating. (I don’t see that dipshit any longer.) Although I was diagnosed with celiac, by a GI, by biopsy… although I was diagnosed with pseudotumor cerebri by a neurologist after ruling out all other possible options via CT and MRI… although I have a leg that visibly swells to nearly twice the size of my other leg and clots have been ruled out… I have a medical record file that says somatization.

    Interesting word that. It means, in short, that I am so batshit crazy that I am making myself physically ill. Nevermind that I was diagnosed with osteoarthritis when I was 15!!! Who the hell gets that at that age?!? Somatization my fat ass. I am a generally happy, bubbly, friendly person. Ok, I’ll admit, I hate “people,” but I like persons. I’m cynical. I’m jaded. Still, I think I’m generally a well adjusted and not at all mentally ill person. I’m sure as hell not manifesting some mental disorder physically.

    I have been sick with symptoms of celiac since I was several months old. I was symptom treated, or merely dismissed for just over 30 years. Maybe three decades ago when I had atypical symptoms as an infant I could understand the confusion. I got a new doctor about the time I was a toddler and he never picked up on some of my more classic symptoms. And much like I am sure many have felt, there are simply many things I never told anyone for fear of being told I was crazy. I felt just a little out of sync with reality, like the world was surreal. I do agree 100% that we need the medical community on board with awareness. Until they begin diagnosing and stop symptom treating we will continue to be a nation of sick people.

      1. “I can’t find anything wrong” is doctor speak for “I’m too lazy to look for anything wrong.”

        1. and my new celiac-savvy GI says he cannot understand why no one saw it in me because I may as well have had Celiac stamped on my damn forehead.

          I said maybe because I was FAT all those years?… because when I dropped those 90 lbs, without trying…. I got labeled “anorexic”
          me? a foodie? anorexic? and in need of a psychiatrist for the “anxiety” this all caused..

          That makes sense, right?.

          1. Sue in Alberta

            If the test results don’t make eye contact with them, it’s the old, “You SAY you don’t feel good but…”

    1. You’re not crazy, Addy. You know I will keep saying this to you, right? Forever πŸ™‚

      P.S. My gallbladder was the first thing to go.

      And yes, everyone who read this!! Gall bladder disease is related to celiac!!!

      1. I’m not saying I’m not crazy. I’m just not the kind of crazy that doctor thinks I am. I’m the fun kind! πŸ˜€

          1. Sue in Alberta

            Just saw this on a t shirt (I know, again with the t shirts!) “You say psycho like it’s a bad thing”. Let’s just say it spoke to me!

  7. IrishHeart, bless you. Really. I hope a lot of people find this and see that they are not alone in their suffering.

    NPR recently did a piece on the book “How Doctors Think” and there was a story about another long-suffering celiac who had her life saved by an eventual doctor who took the time to figure things out rather than label her symptoms.

    I read the book on the way to a conference. I cried. It was so thoughtless the way she was treated, and it made me think about my own story of going undiagnosed for 22 years. I thought about the horrible things they used to do to me in school (make me take cod liver oil and flax seed in the middle of the day) making me physically ill until I took what strength I had to say I was NOT going to do it anymore at 10 years old and that they couldn’t make me.

    Every time I meet another person who is in their first year of going gluten free, I ask them about symptoms they had that went away, and they all describe long-standing health issues that just disappeared. It’s heart breaking.

    Eventually I think we’ll be on the common standing with peanut allergies, and people will respect celiac disease and gluten/wheat allergies. Its people like you, IrishHeart and Gluten Dude, who keep inspiring me to bring awareness on a person by person level, hoping that the each doctor I tell my story to suggests to just one person that gluten may be behind the cause of their issues.

    1. I read that chapter in that book and wanted to vomit. I gave it to my doc to read.

      Bless you, too Connie!!!
      We have to keep telling our stories.
      It’s the only way we can get people to see this thing for what it is.

      Symptoms do resolve!
      I could not walk or move, I needed help getting dressed at one point and my muscles nearly atrophied and became wooden from malnutrition. It was insane.

      After 2.5 years of gut healing, PT and massage, I am back at the gym and using weight-resistance machines. I rode a bike again for the first time in 7 years. I swam with dolphins last month. πŸ™‚
      I have reclaimed my life.
      Others can too!

      1. I got so upset reading your story and many of the others, I had to
        stop. The familiar thread so common to all celiacs is the time it took to get diagnosed correctly. I am going to do something in my area of southern CT this spring.Could you please email me so we can talk more? shoreglutenfree@yahoo.com.

  8. Thank you, Irish Heart, for sharing your story. Did you know that the incidence of celiac in people with Irish / Scottish and Welsh heritage can be as high as 1 in 40? (I learned that from my dietitian who specializes in celiac).

    We fired a doctor on Friday for telling me “We can’t always find the cause, you’ll just have to learn to live with it,” despite joint pain that is so debilitating that I can’t get out of bed some days. I’m almost afraid to have those medical records transferred because who knows what he wrote about my mental state. Like you, I’m normally a happy, outgoing, productive person, but this disease has brought me to my knees and the lack of any clear answers is killing me.

    The jury is still out as to whether I have celiac but I do have the classic symptoms and the family history. We are headed off to spend more money on yet another round of doctors. Surely there has to be someone who cares enough to help us figure this out.

    1. I hope you get an answer soon, Mardee…. but if you think gluten is making you sick and you get a negative blood result, you can still dump gluten and enjoy better health.

      yes, some folks quip it is the “Celtic disease”

      I am only 1/8 Irish, btw. plus Armenian, French- Canadian
      and German. (The username IrishHeart came about for other reasons).

      Europeans are most commonly affected by Celiac, but North America is the melting pot of all those nationalities and so, it makes sense that so many of us have the genes and the predisposition to develop celiac.

      Celiac disease is the most common genetic disease in Europe.
      In Italy about 1 in 250 people and in Ireland about 1 in 300 people have celiac disease.. Sweden and Denmark have a high rate.
      A University of Maryland study of over 13,000 subjects demonstrated the prevalence at 1 in every 133 Americans have celiac disease. This study was released in February 2003.

      Because of the genetic component of the disease, it is found in 5 to 15 percent of siblings and offspring of celiacs.

      The Italians are the wisest country —testing their infants for celiac early on so they can spare them a lifetime of symptoms and ill health.

      Hear that American Doctors???

  9. (aka the other Sue in Alberta – hey, Sue, we need to meet!)

    Irish, thank-you for sharing your story. I, like Claudette, and many others here, feel a kinship with you. I have a very, very similar story. I have been ill and misdiagnosed for… just doing the math… wow! 30 years. I still have not been diagnosed with Celiac Disease, but am certain I have it. I have been diagnosed with many other things – Reynauds Syndrome, Chronic Fatigue Syndrome, Arthritis, Multiple Sclerosis, Ehlers-Danlos Sydrome, Hashimoto’s Thryoditis, and on and on. My son has Celiac Disease, and we both carry the DQ2 gene. The only reason I have not been diagnosed with Celiac Disease is that I stopped eating gluten a couple of years ago and refuse to go back on it just to receive a diagnosis. I don’t need another diagnosis. I know that gluten is my enemy.

    Irish, I am with you. I agree with you. I have spent the money you have and have endured the disrespect and stresses that you have in dealing with the medical community. It does have to change.

    My son was diagnosed quickly because I don’t care about irritating doctors as much as I care about my son. If I can add to your helpful notes and advice to others, Irish, I would urge anyone who is still seeking diagnosis and good health to never feel guilt or worry over consulting a doctor or requesting a test or referral. DO IT! Take care of you. You know your body best. Trust your instincts. Keep your spirits up. You may feel outnumbered, misunderstood and alone in the doctor’s office, but YOU ARE NOT ALONE.

    1. I’m curious about your Ehlers-Danlos. My daughter has been diagnosed with it (but not dx with CD yet) and I am interested in the potential reproductive issues… Did you have any problems getting pregnant, carrying to term, or delivering? I am sure she has CD – we will be testing next month, and I am wondering what other info I need to get to help her prepare for her future. If you don’t want to answer publicly, you could email me directly. (andybfinley@yahoo.com) Thank you.

      1. Since two people I know have both ED and Celiac, I would say YES and I know that many AI diseases are related. The things they have in common—- genetics and inflammation in the body.

        Cookie’s Mom—you sound like a celiac to me, hon. FWIW.
        Raynaud’s & thyroid disease are often associated with CD.
        (my good friend has both plus Sjrogen’s along with CD)

        My supposed “hashimoto’s thyroditis” has mysteriously disappeared
        and my thyroid functions normally off gluten (although many people in my family also have it) , but the osteoarthritis is my gift for life, I’m afraid.

        In fact, the celiac literature states than people with autoimmune thyroiditis
        should be tested.

        Maybe you guys should print off the list from the U of C that I posted above and bring it to your docs.?

        1. Irish, I am fairly certain I have CD. For me, the diagnoses (all of them) are somewhat irrelevant. I just want to be well. I may do a gluten challenge at some point, but I really don’t know that there is a point. I know that I feel better off of gluten and have managed to stay away from it for a couple of years now.

          My son is being watched by a very good Celiac aware paediatrician at our children’s hospital, so I have some comfort there. As for me, I continue to battle my way through the system. I now have an issue with my gallbladder and it’s looking like it needs to be removed. Any advice there, Irish? I wish I didn’t have to lose it but last test showed 36% functionality and symptoms have been worsening ever since…

          1. Sadly, I have no advice on whether the GB can rebound off gluten.

            If your gall bladder is diseased (as mine was) they remove it.
            What did the HIDA scan reveal?

            Interestingly, I do not know many in my extended family who still has their GB….

            1. HIDA scan said GB functioning at 36%, and surgeon said anything 35% or less and they recommend removing it. I guess it’s time to retire mine… Perhaps I’ll plan a little goodbye party, maybe have the other organs sign a card. :>

            2. Sorry, kiddo.
              hey, the good news (if you can call losing an organ good news) is they do it a lot less intrusively than the “old days”. I have a 9 -inch scar starting at my breast bone taking a right at the belly button. Took me weeks to recover. We need those muscles to walk, breath, laugh and even sneeze. LOL I said “Ouch” a lot.
              and dang , it ruined my bikini figure….sigh πŸ™‚

            3. Sigh indeed. That IS a silver lining, and I am also trying to be grateful that it will, hopefully, come out before my liver starts to fail (which apparently can happen to people who carry around a diseased gallbladder). Good times… πŸ™‚

            4. I had stones, one got out into my duct and was stuck and blocked my liver. My insurance wouldn’t pay for “elective” surgery to have my gallbladder out, but at this point they had to because if I didn’t have emergency surgery I was going to lose my liver also. Let me just tell you that after 3 months of ER visits for attacks that not even narcotics would touch, life without a gallbladder is GOOD!

              I have 4 tiny scars, and was in and out of the hospital the day after the surgery, even including the fact that I had to have an ERCP (which is like an endoscopy on steroids) that day also. I couldn’t just sit up from laying for a few weeks, and had trouble rolling over for a short time from the pain, but besides that it was a walk in the park.

            5. Well, my GB was diseased for a year and half before they took it out. (again, this was when I was young and naive and trusted doctors to guide me and it was back when dinosaurs still roamed the earth –1985 ) πŸ™‚

              I had some nasty symptoms which gradually got worse and I was turning “yellowish” with some jaundice. BUT .that all stopped when they took it out. Then my liver enzymes were wonky with the CD and now, my liver seems to be okee and dokee!!. The liver is a remarkable organ that seems to do a ton of work for us and never seems to complain much.

              And I drink gin and wine sometimes and my liver still works fine. FWIW πŸ™‚

              I hope everything works out okay for you, hon. I trust you will keep us posted.

            6. Thank-you, Irish and Adelaide. I am sorry for what you both had to go through to get well, but thank-you for sharing your experience with me. It gives me courage and makes me more optimistic about the surgery.

      2. Hi Andrea,

        I’m sorry your daughter has to suffer, but just know that I have had a good life (despite all). It would have been improved had I known about the EDS earlier in life, so you have a leg up there. I’ll answer here briefly in case anyone else can benefit, but I’ll email too so that you have my contact info. Contact me anytime you like if I can help.

        I had no trouble during my pregnancy, but my son did come a little early. He was exactly 37 weeks when he was born. Early delivery was a risk factor for me, but I was monitored closely by an EDS and MS aware physician. (I also have a heart defect so monitoring was essential.) My son was healthy, but after two weeks we thought he had the worst colic imaginable (colic on steroids, I used to call it). Turned out to be GERD. Brutal, horrible, awful, but finally made better with medication. I think that perhaps parts of his GI system were not quite developed at birth, but it may also have more to do with his genes (e.g. the DQ2 that we both carry, which I have heard termed the ‘autoimmunity gene’).

        Is it the hypermobility type of EDS that your daughter has been diagnosed with? That’s the only type I can speak to. If that’s the case, the best way to prepare her for the future is to instill in her a strong sense of self-reliance, self-respect, a good awareness of her body and it’s needs, without instilling worry or dread. Light-heartedness with perseverance together. She can lead a ‘normal’ life – a good life, in fact – and worry and fear will only increase illness. That may sound trite, but it’s honestly the best advice I can give. I can offer more practical help too if you have specific questions. Emailing you now….

  10. Fantastic Job IrishHeart!

    I’m in the process of writing to each and every primary and specialist that dismissed me for over 25 years — not sure I’ll ever send them — but I probably will at some point. I’ll have an extra special love note for the chief of rhuemy that looked at my knuckles of my hands and said…”well I highly doubt you have anything autoimmune going on” — wrong doc — everything I had going on was autoimmune in nature and your dismissive tone added punctuation to a very long line of dismissive doctors that simply did not know which blood tests to run when someone presents with multiple issues repetitively for years that progressively get worse until that patient becomes a lump of useless cells..

    Ok…on that bright and cheery note…I am off to ride my bicycle, run errands, plant a few more herbs, take care of family and sign up for more science classes!

    Since we can’t beat them with a stick — guess we will just have to educate them πŸ˜‰

    1. I wrote that letter to the doctors who missed the boat.

      I got no replies in return, nor did I expect them— but if it made them think, so be it.

      It made me feel great to enlighten them!

      Love your spirit, Ski…your road was long and hard and you are inspirational and having your friendship during my recovery has made it so much easier. The pink pompoms you sent are on the bike!

      and yesterday, I lifted over 7,000 lbs. on the weight machines at the gym.
      hear me roar, baby!! love ya, girl! πŸ˜‰

  11. Gotta Ski's hubby

    I read every bit of this sad account of people’s lives destroyed/wasted by the continual letdown from our medical “professionals”.
    It has been an amazing journey for my family to figure-out the simple truth….eat the right foods…you’ll need no medicine and can return to healthy living πŸ™‚
    Why does our medical community have to keep training doctors to not diagnose this terrible disease? How do we get them to change,
    Celiac Awareness is a huge step.
    Irish, thanks for sharing, you have helped many, and you have been an inspiration to my wife.
    You all keep helping each other, spreading the word, and maybe the world will get better, one doctor at a time:)
    Thank you Irish!

    1. IH’s hubby said to say He knows what you did to be there for her, too!
      And so do I, D.

      The thing is… your wife and I will continue to be celiac advocates for as long as we have breath. And without our loving husbands who carried us when we could not walk, our struggle would have been worse.
      Your wife is a warrior, but you already know this.

      xx to you and your wonderful family.

      1. Gotta Ski's hubby

        You gals took the abuse and did the work, all we did was love/support πŸ™‚
        You two warriors have a higher calling now and you’re off to a good start!
        I cant tell you how happy I get every time Lisa retells a “You helped me ” story. It makes our struggle worthwhile.

        1. I am one of the few celiacs who will say “I was HAPPY” to learn I had CD because it was an answer. J and I jumped up and down when it was confirmed.

          And my hubs shares your thoughts– It’s the “good thing” that came from so much misery. Paying it forward and lending a hand so no more people suffer.

          Your wife and I choose to channel our anger about the medical community’s failure to help us into something positive.

          I have sent 8 people to my GI doc:. 5 with CD, 1 NCGI 1 GB disease and 1 with ulcerative colitis (and possible CD).. Anytime someone tells me they are getting better, I rejoice.

          If we can spot a celiac, why can’t they???

          1. Gotta Ski's hubby

            You’re not alone, we were happy too πŸ™‚
            After a damn long trail, we finally had a direction and we could start to move forward.
            Also ecstatic it wasn’t chemo…or some other drug with side effects. At this point it was easy to change our diets. Yes it took some work, but pretty soon, eating GF was just normal.

            1. To be honest, as much as having to live this way sucks, I’m happy too. The only thing that I really miss is baklava… but it’s not worth getting sick over. Oh… and also good pierogies and a gluten free pizza that doesn’t taste like either rotten eggs or a soggy rice cracker. But I’ll take feeling good (that is to say, not fatigued, actively psychotic, and not in abdominal distress) over all of those things.

            2. Claudette, dear girl…
              I can help you with a good pierogi recipe (yummy & taste tested)
              a good pizza dough recipe (springy and tasty)
              … but to make GF baklava the way my Gramma used to make it?
              takes about 6 hours.
              I have seen it done on youtube by an amazingly patient man….and someday, when I have strength enough, I’m gonna tackle that sucker! LOL .

  12. I am so thankful that my son was diagnosed so quickly. At the end of 2nd grade, I noticed that all of his classmates were at least a head taller than him. I took him to see his pediatrician, and he had fallen off the growth chart. The doctor ordered some lab work. I remember him talking out loud while he was marking tests on the order form. “CBC, metabolic panel, thyroid, hmmm, a Celiac panel, I guess we can check for that too.” I think if it hadn’t been on that order form, he wouldn’t have thought about it. But I’m so thankful it was. He had other symptoms too. He had seen a dermatologist for eczema, a neurologist for migraines, and his dentist said he had no enamel on his molars. After being gluten-free for a couple of months, the eczema went away, and he hasn’t had a single migraine since (three years later). Unfortunately, he can’t make new enamel for his teeth. But, I am so thankful that he was diagnosed quickly compaired to the years, and years that some people suffer.

    1. That doc was pretty savvy. I have read on the U of C site that some children “may see as many as 8 pediatric docs before they get a proper DX.”

      (but in retrospect, my Mom has pointed out this does explain all the various illnesses and leg bone pain I complained about as a kid.)
      She told me it “was growing pains” and she heard the same thing from her mother. This explains all her medical issues too. Seems I got it from both parents.

      Good for you for advocating so strongly for your child!!

  13. Thank you Irish Heart for your story. Your story makes mine look like a cake walk. I believe I had Celiac for about 3 years because that’s how long I felt crummy. I went off of the Atkins diet because my son said I was too skinny. So I added whole grains to my diet and that’s when the trouble started. When I went to the doctor because a mole turned black overnite–it was just bruising, he did a complete blood count. I was anemic and had almost no ferritin. I am post menopausal so that was a red flag. He sent me to a gastro doc and he did a colonoscopy and an endoscopy. I have Celiac disease. I have never looked back. Doctors should test for Celiac disease first and perhaps people would feel better sooner. People scoff at us, treat us like freaks of nature, and that we have an eating disorder. I had the luck of being diagnosed after menopause. I say lucky because I have 4 grown children and 5 grandchildren. My fertility was never affected–obviously. I don’t ever cheat, only if its accidental and that has not been for a long time. We are a community of strong willed people and advocates. We are not weak. We rock! You rock Irish Heart and thank you!

    1. Thank you, Claudia. I love reading your comments and thoughts here on GD’s site! πŸ™‚

      The largest number of people being diagnosed are in their 50’s, 60’s and 70’s. My friend was Dxed at 72 after her daughter was diagnosed. My mom went GF at 84. It’s never too late to reverse ill health, IMHO.

      This once “rare childhood disease” (yes, that is what I was told when I first suggested to a doctor that I might have it) is of epidemic proportion and it is time for the medical community to wake up.

      If people reading this blog and the comments think they are “too old, or too fat, or “not sick enough” and the meds control all the symptoms of their various illnesses…. please, READ this article :


      1. Too true! I was watching a video on the Mayo Clinic’s website yesterday when the doctor (now a celiac disease expert) said that she was taught in medical school that celiac was very rare – an incidence of 1 in 10,000. She said something to the effect of “We now know that celiac is, in fact, a very common disease, and more doctors need to be informed about how to diagnose it.”

        Amen, sister.

  14. Oh, my! This is good! I wish this could be mailed to every practicing doctor out there. I know some of them would throw this in the trash because there are those physicians who hate being told they forgot something important but there would be those who would change the way they do things and more people would be diagnosed. What is this resistance to telling people they need to fine tune their diet so they can be well? Oh, yeah….profit from symptom treating. We are up against a huge wall here, folks. But Irish did a fantastic job of putting it into words…like she always does! Good work!

    1. GEM,
      If anyone would know the negligence of the medical community it’s you, my friend. You almost died from CD too–and now, you are a celiac advocate.

      I will be forever grateful for your endless encouragement during the first year when I wondered if I would ever feel well again (or ever have my brain back ) in this lifetime.

      You just kept saying : hang in there, it gets better. You were right. It’s been a long trip, but made easier because I had you in my corner.

      1. Thanks, Irish! I waited 3 years to feel 100% again and was constantly amazed at HOW MANY symptoms were Celiac related.
        That’s the hardest part of teaching others…making them believe that their many symptoms are all from eating gluten. No one likes to hear it takes that long to get better for good but it can be true for many. But I am now 8 years out and have never been this healthy. It was worth the effort and wait. And now…I get to watch you recover into a fully functioning human again and I am pleased as punch you are well on your way. Now to get the medical people on board with this……


    2. Here, here Gemini!

      Let’s start by sending to each Medical School – my very young primary was taught Celiac was a childhood disease which ALWAYS presents with short stature, underweight with diarhea — and my favorite old doctor’s tale….celiac disease can be outgrown.

      Granted some doctors are learning a few accurate details….but no where near enough to prevent what happened to us and untolled numbers of folks that are still suffering with incorrect diagnosis or simply being summarily dismissed.

      1. That is a good idea, GottaSki! I wonder how difficult or feasible that would be to do. The other problem is the resistance to testing and changing their diets many people have. I wonder if most docs just don’t bother due to the difficult nature of people today. I also don’t think doctors realize how dangerous it is for people to keep eating gluten when they shouldn’t. After all, when I was malnourished and underweight and weak, all I kept hearing was how lucky I was to have such a great metabolism! Yeah, great….I’m dying here but kudos to me for good weight management? I presented as a classic Celiac so there was no excuse. I guess because I wasn’t 7 years old at the time had them fooled. It’s enough to make my head explode.

        There must be some grand poo-bah in charge of medical schools that SOMEONE can contact. Maybe Irish, yourself and I should be the ones to do it? ; ) I’ll take ’em on……with pleasure!

          1. Now this sounds like fun!

            My current Celiac Doc is on the board of the Gasterenterologist Board — she travels the world presenting on CD and NCGS!

  15. IH-

    Very inspirational. Love seeing your comments on this blog. You have helped so many people (you 2 GD) on this blog, you have made a difference. You are loved.

    Jersey Girl

    “You know, the ancient Egyptians had a beautiful belief about death. When their souls got to the entrance to heaven, the guards asked two questions. Their answers determined whether they were able to enter or not. β€˜Have you found joy in your life?’ ‘Has your life brought joy to others?'”

    -The Bucket List, 2007

    1. You made me cry, JG .
      thanks so much for your humor and your quotes.
      (still laughing over your “bite me” line…)

  16. I hope you are feeling better now you have a diagnosis.

    How many times did I hear “your bloods show you are feeling unwell, but I don’t know what’s causing it, so I don’t know how to cure it…”

    Right up until the time I showed up there with classic coeliac symptoms (and got told I had IBS – someone who really does have IBS told me my symptoms were totally different and to go back and tell the doctor to come up with another explanation).

    CD runs in the family, but my GP ruled it out because it “always gets diagnosed before a child is 2”. So when I started showing vague symptoms aged 6 (fatigue, no enamel on my adult teeth….) it couldn’t possibly have been CD. Hormonal problems from the age of 11, but that “wasn’t CD”. Joint problems from the age of 15, but that “wasn’t CD”. Rheumatoid arthritis at 26, but that “wasn’t CD”. Everything apart from the dental enamel has improved since going GF, the doctor has now admitted that most of my health problems in the previous 30 years were probably due to CD.

    1. Kate
      My recovery was slow…like a tortoise…. but I am better, thanks!

      When I saw my nephew in January (for the first time after 2 years), he said loudly “OMG Auntie!! you look so GREAT!!”

      and I quipped back” yeah, that ‘not-dying anymore thing’ is really working for me, babes” πŸ™‚

      Life is very good –off gluten.

  17. Thanks for writing this – I’d say a huge chunk of what you wrote has been in my own head and heart for a long while now (along with living in thousands of OTHER folk’s heads & hearts) but you managed to put it together with… a lot less anger, a lot less profanity, and a lot clearer of a message then I’ve been able to get to lately. I feel like just printing this off and walking copies of it into every doctor’s office, every shrink I got dragged to, ever hospital, ever nutritionist, and in a few ~extra~ special cases… the flipping minister’s office who had taken it upon themselves to explain to my folks that it was a spiritual issue and I was either resistant to getting healthy or actively in need of having demons cast out because that was the only explanation for me being sick from 3 to 28 (well. STILL sick. But at least I’m now slowly scrabbling upwards and not still plummeting off the cliff so…. progress.) and making them all read it.

    I’ve recently gotten to a point where I’m trying to not think about it. To just… ignore it. To try and pretend it was all a bad dream and I’m awake now and it’s fine because if I think too much about the past I’m afraid I will start screaming and not be able to stop. I don’t really understand it, I should be dancing. Singing from the mountain tops that at last it’s understood, it’s known, it’s gonna be better – instead it’s taking every waking moment to not fall under this black wave of anger and resentment and bitterness over having lost the vast majority of my life to celiac – but more then to IT, lost in the hands of doctors who couldn’t be bothered. Dismissed, ignored, and in some cases actively harmed by the medical profession. If I let myself think too much about the doctor who finally (and so begrudgingly) did the scope & biopsy and how he smarmily informed me after that, obviously, doctors must have thought it a possibility, but as no one ~really~ is going to be willing to be GF, why bother…. the red haze starts to go down over my eyes and we haven’t gotten the heavy bag rehung yet for me to get it out of my system. Chemo makes you puke and lose your hair … is that enough of a reason for doctors to refuse to bring it up to cancer patients? I just…. I can’t see a difference.

    I’m trying to get my head into a better place. I’m struggling to regain my health. And I know that I’m actually a lucky lucky woman. I have an amazing husband who supports me every step of the way and when I am too tired, too sick, tootootootoo he advocates for me (and while a woman exhausted and sick can be talked over – I’ve noticed it’s a great deal harder to do with a 5’11, 380lb former powerlifter who has decided he won’t be moving out of the doorway until he gets answers!) and has even gone GF at home and out with me. I’ve got the ability and the time and even the brand new kitchen (we’re at the tail end of a reno – meant to just replace the stove and paint… when it’s done in a few more weeks every appliance, counter, plumbing, cabinet, floor, lights, and even most of the pans, utensils, and dishware will be brand new and 100% GF!) to prepare and figure out GF meals. All amazing things, and I have it so much better then so many others…

    So why am I suddenly so angry? Why have I just reached this wall I can’t seem to climb or find my way around? Food tastes like dirt in my mouth and I’m just a walking ball of anger and grief. It’s JUST FOOD. I got to the end of the race, I got diagnosed, I got answers. It will take time to heal (and I know I have to accept that some of the damage done is permanent as well as there being some ~other~ health issues I’ll be grappling with – Fibro, other food allergies & a heart that goes a bit sideways to name a few – for the rest of my life) but I got the answer and that should be it, right?

    Instead, I’m angry and depressed and closer to just wanting to sit down and stop then I was in the 3 years that would lead up to my eventual diagnosis. I’m almost at the 5 year point from finding out it is celiac. I got seriously ill right after and am only just now crawling out but instead of just being relieved and happy to have an answer that, if I had gotten it at any time earlier in my life it would have been like winning the lottery, to finally ~KNOW~, it feels more defeating then all that went before. I think one of the reasons I’m struggling is, now that I’ve been diagnosed, I’ve seen several of the doctors that waved me off for years – and the vast majority seem to be actually insulted and angry with ME. Like this wasn’t something it would be ‘fair’ to expect them to catch, like I failed in explaining how I felt. Before, I was either crazy, dying, or resistant to their intelligent plants. After, I’m just being petulant and bitchy because I don’t understand how hard it is to be a doctor and try to diagnose people who are so impossible to help. I’m even struggling to FIND a simple GP ~NOW~ because several of the doctors my husband and I have tried in a search for a family doctor have, once they find out about the celiac, have told me they don’t ‘feel comfortable dealing with people with that kind of trend based situation’.

    And there goes that red mist again…..

    1. I understand your anger. I really do. And I felt it for a long time.

      Hubs, too–who demanded of one doctor “Just give me my wife back!” He felt helpless watching me dwindle down –seeing that I could no longer add a column of numbers or drive because I was so ill. The once vivacious, chatty wife who became silent and had trouble articulating and comprehending new information. The woman he had to pick up off the bathroom floor because she was so exhausted from bouts in there…. and on and on and on.

      and Jenna,
      I have said “If I had been Dxed earlier, my whole life may have been different. I may have had children”…”If I had only figured it out sooner, I wouldn’t have lost 3 years of my life as a walking dead woman”. “.If I only knew about this earlier, I could have saved my Dad”…..I have “Iffed” myself silly, but the thing is, we cannot go back.

      I can lose more time dwelling in anger and misery or
      I can spend each day living.
      I choose living. I suck the life out of every day now!
      Some people have it worse than I do. Some have cancer or other AI diseases that destroy their myelin sheath and they are in wheelchairs.
      I do not need the scooter that was once suggested to me.

      We can only play the hand we are dealt and keep moving forward.
      My fave quote about all this?

      “Life is not what it’s supposed to be. It’s what it is. The way you cope with it is what makes the difference.”-Virginia Satir

      I hope you come to a place of peace. I know it is not easy, hon—but being angry at them only hurts you. Give yourself the chance to be well and happy now.
      I send you all good wishes.

    2. Jenna…this site has gotten over 11,000 comments in the 18 months it’s been in existence and I don’t think any comment has moved me as much as yours did.

      All I can do is echo what Irish said. You must look forward. If you keep looking back, you are going to miss out on everything life now has to offer you. And life can offer a lot if you just let it.

      Feel free to contact me directly via my contact page on this site and I will help you in any way I possibly can. We’ve got a great community here. Lean on us for support.

      You will find your way again.

      Sending the best of wishes your way.

      Gluten Dude

    3. Hi Jenna!

      You. are. not. alone. I have had every bit as much anger as you are feeling now. Like IH, I lost way to much of my life to this flipping disease — or rather — the medical community’s lack of knowledge of this disease. I had a thriving Property Management business just over a decade ago that I had to sell when unexplained flares kept getting worse….since then I have worked when able — until I could no longer even stay vertical for a few hours per day. I was finally dx’d four years ago, but got much, much more sick until I became the “human amoeba”. It took a very long road and way too much research to find all the foods I needed to remove because my digestive system was completely destroyed.

      Thankfully, I was able to have children as those that have this ability stolen by Celiac Disease breaks my heart. All of my children and grandchildren have CD or NCGI/NCGS. Between us all I think we have had each and every of the more than 300 symptoms associated with Celiac Disease. Watching my kids suffer was the thing that made me the angriest — the oldest still has 5 AIs besides CD and like me is struggling to gain health each and every day.

      I have only had about six months of what I call the best health of my life — I still awake completely locked up and often in a great deal of pain…thankfully I am able to get moving and am able to complete things I couldn’t even dream of in my zombie/brain fog state during the worst flare of my life — just one year ago.

      Believe me – I am not “Mary Sunshine” when something I am intolerant of jumps in my path — um ya I am even intolerant of sunshine! But I have improved beyond my family’s wildest dreams so each day is now truly a gift. We expect this healing to continue and maybe even get a few of the many healthful foods I have lost back at some point. I often joke that I would eat cardboard to obtain health and now that I have mostly healthy days – it is no joke — I will eat only what my body allows to gain health.

      Gotta say…it is much easier to let the anger go now that I feel good most of the time.

      My hope is you will be feeling better each day and be able to channel that anger into something that will make your life better.

      For now — stomp your feet and scream out loud — I’ve been known to do both those things and it helps!

      Sending a huge HUG along with this message.

      Hang in there : )


    4. Jenna, add me to the list of people that will stand up for you. I’ve been there – doctors that are angry with ME for asking them to actually help me. I have been diagnosed with MS, but before the diagnosis came in, when I was requesting a specialist appointment because of a recommendation from another specialist, my GP actually said these words to me: “Would you be happy if I just TOLD you you have MS?” I am a positive, proactive, responsible, strong, and adaptable woman, and there is no way the label “hypochondriac” applies to me, yet it was being applied. The first thing you need to accept is that it is okay to be angry. Anger is part of grieving and if you were not able to work through the anger at other points during this process (e.g. before, during, after diagnosis), then it makes sense you would be angry now. Hell, I have been at this for 30 years, and I’m still angry at times. You need support and some tools to deal with the anger, but the anger is justified and it is okay.

      Like Irish, I could say that I have ‘lost’ a lot of time, and my sadness over things like that does still come in waves. It’s definitely work sometimes pulling myself out of that place, but it’s work that is worth it. My parents didn’t make it to 60, and at 45 I am healthier than either of them were. I intend to keep it that way, and one way that I can do that is by dealing with the anger (allowing it – experiencing it – resolving it – and then letting it go), and by being grateful every day for what I DO have (this is where the real work comes in – it’s an ‘active’ thing, like writing in a gratitude journal). Like you, I have a lot to be thankful for, but there is this anger. I get it. Allow it. Work with it. Be gentle with yourself, because you are the best friend you are ever going to have. Love that husband of yours, by the way, and am so glad you have him in your corner.

      I own, in addition to my gratitude journal, this book: “IN MY HUMBLE OPINION: A journal to vent about why people are like that and why all the stupid things they do are so obvious to me, from not using their turn signals to believing they’re the centre of the universe to sweating the small stuff to ignoring the fact that we’re all just trying to make our way in this insanely crowded world but some of us are doing it a while lot better than others.” Awesome title, yes? πŸ™‚ Could come in handy for you. You need to keep doing what you did here – get it out. Write it out. Write until there is no anger left in you… and then turn to the gratitude journal, or whatever way you find works for you to enJOY what you have, because experiencing joy is what life is about. I know you don’t want to spend anymore time than is necessary on this because it feels like more wasted time. I get that. Some of it IS necessary though… in my humble opinion. πŸ™‚

      Take good care, Jenna. This community is here for you. If you haven’t already, also see if you can find a local community of people who are dealing with what you are dealing with. So helpful to have friends to ‘bitch’ with and eat with!!

      1. Oh, so beautifully said, Cookie’s Mom.!!
        I agree.
        Writing is as cathartic as it gets for me.

        I have done it all my life and I taught my students to do the same.
        I even kept my journal during my time in gluten head hell –when I was the most ill I have ever been –and I have started to revisit some of those pages to write more articles.

        While painful to read them and see my own struggle with cognitive issues, the sleepless nights, the pain and the brazen arrogance of some doctors, it is a reminder of how far I have come and how blessed I am to have my husband, my rock and my heartbeat, as my best friend.

        Despite the hurdles we all have to cross, life is very good.

        Jenna, I hope you will hang around with us here on GD! πŸ™‚

    5. Jenna, I don’t know if you’re close to any of the major celiac research schools (Columbia, Maryland, Chicago), but if you are, ask if they have GPs that they know and.or work with. Most of them do. Also, I don’ t know what your insurance is like, but if you have pre-existing conditions you can sometimes choose a primary physician that is in another specialty – in this case a gastroenterologist. Then perhaps that doctor can recommend an internal medicine generalist for your other needs. I know that my GP is a women’s health specialist because I’m in recovery from breast cancer. So that makes a difference.

      I should also highlight that autoimmune disorders travel in packs. Usually if you have one you actually have at least two.

      As for food tasting like dirt… and I hope I’m not out of line for recommending another blogger, but the blogger who helped me rediscover my foodie-ness (I’m a bit of a gourmet) post-celiac was Peter Bronski (No Gluten, No Problem). Peter’s wife is a graduate of the Statler School of Hospitality at Cornell and between them they wrote an amazing cookbook (Artisanal Gluten-Free Cooking) that helped me (re-)discover great food. Hang in there, Jenna.

      1. OMG I love the Bronskis! I am a bit of a gourmet too and the
        First cookbook I bought as a Celiac was theirs.
        Their pie crust recipe saved Thanksgiving! Yummy flaky crust!!
        And I told them both that I am grateful to them for that! :).

  18. You hit everything right on the head with this one. I am only 22 years old and went through my childhood being super sick. Pretty much everything you have described here was my life. Doctor, after doctor, after doctor, and no one could figure it out. It was awful. I lost fate in doctors and still to this day, really don’t trust them. I lost a ton of weight like you did and was super ill. People said I looked like death and never thought I was actually going to make it. Thankfully, I was diagnosed and there was a cure, even if it means not eating wheat ever again. I am fine with that.

    1. I was a dead woman walking and my recovery was very slow,and I am still not 100%, but I am here to tell you, it gets better, I promise…. and you will continue to heal and have a long, healthy life.

      I honestly do not even miss wheat.
      I eat very well and I am probably healthier than I have even been in my entire life and I am 56 years old. I look younger than I did at 46. I looked like 95 for a while there. It wasn’t pretty. Not at all.

      Hang in there, hon! πŸ™‚

      1. IrishHeart,

        Thank you for the encouragement. I really appreciate it. I can honestly say that I don’t miss eating wheat either and I am a lot healthier than I was before as but I also have a lot of other food allergies. So, eating food gets to be a challenge for me.

        1. I had to do without several different foods for a long time(dairy, soy, eggs, high histamine foods like toms, strawberries, vinegar, bacon and processed meats, mushrooms, avocados etc….oh, and alcohol
          (gasp! πŸ™ )
          and understand how limiting and frustrating it can be. And, it is challenging and BORING. LOL
          I am getting some foods back after so long–and rejoicing in each one.

          I see other celiacs go GF (no other food intolerances at all) and they are fine. Go figure!
          Hope you continue to heal. Best wishes.

  19. Hi, I’m so sorry you’ve had to deal with all of those problems. My experiences – as a coeliac and with the medical profession – have been very similar but, fortunately, less long lived. I’m incredibly grateful that I was diagnosed at a relatively young age by my new doctor when I moved to university. The very first time I went to see her for some more of my ‘routine’ iron tablets, she pointed out that I should have been tested for coeliac disease years ago. The doctors I’d seen at home had told me, on multiple occasions, that I was just anaemic and stressed. I felt like I was dying! I lost about 20lb in around 18 months and I wasn’t overweight to start with!

    There definitely needs to be more training for those working in the medical profession. It seems like many are either almost oblivious to the existence of coeliac disease, or go by information that’s incredibly out of date. Even worse, when I was back in hospital after my second gastroscopy/biopsy to confirm that I was starting to heal, I was groggy from the sedatives, and the nurse was trying to feed me a (gluten) biscuit to prove that I had recovered enough to be discharged! Fortunately, I just about had the presence of mind to refuse and my mother brought in some gluten-free biscuits so I could eat them to prove I was well enough to leave! How are we supposed to get the wider public to take this disease seriously when hospitals don’t!

    1. Many people tell us similar stories…and I am thinking schools, nursing homes, hospitals, and prisons (any “institution” really) should be extra careful to provide safe meals for celiacs and gluten-intolerants. They ask about food allergies when people are admitted, but I would hope they would take heed of Celiac or NCGI on a chart.

      I feel as if I should tattoo this on my chest: “Don’t feed me gluten!”
      just in case. hmm….

      1. Sue in Alberta

        I wear a Medic Alert pendant 24/7.The catalyst was the very real fear of what “almost” happened to you, Grace.

  20. Honey, you had me at “crazy, menopausal woman”. I had a hysterectomy — afterward found to be unnecessary — since it was thought I must have had some undetected endometriosis-type issue in my female parts causing all the pain “down there” in my gut, sapping all my energy, and throwing my hormones horribly out of whack. Sadly, it fixed nothing…except me, although getting spayed wasn’t exactly a life goal of mine.

    I have been seeing a variety of OB/GYNs, gastroenterologists and other specialists, all while keeping my GP in the loop, for 15 years, enduring the pin cushion life of a lab rat. Finally someone (a gastro doc) stopped ordering yet more tests, meds and surgeries and said “hey, why don’t you try removing gluten from your diet and see what happens?”

    Desperate to try anything, tired of adding more expensive, useless and aggravating drugs to the list, and out of body parts to spare, I went to Whole Foods and loaded up on safe foods from a list his nurse gave me. He said it would take no more than a few days to figure out if this was the culprit. (And here, I’m thinking, gosh, that’s less time than it took to get back the results of any other test they’ve done!)

    It shocks me how easy a test that was, yet how difficult it was to come up with the idea. People in our position endure so much when such a simple, non-invasive — and free! — answer is right there, waiting for a test drive. It makes no sense.

    Now when I tell people what it took 15 years to figure out, they roll their eyes and make comments like “oh, you’re not falling for that, are you?” I try to explain what a lifesaver this knowledge is, but you’d think I was telling them about a UFO abduction for all they believe me. *sigh* At least I know now, and, just like you, I’ll continue to spread the good news, despite the “ooh, she crazy” looks.

    1. ” I try to explain what a lifesaver this knowledge is, but you’d think I was telling them about a UFO abduction for all they believe me. *sigh* At least I know now, and, just like you, I’ll continue to spread the good news, despite the β€œooh, she crazy” looks.”

      UFO abduction (snort!) LOL Thanks, D!

      My whole point in writing this article was that the majority of the time, illnesses are caused by inflammation. Inflammation is often caused by the body’s response to something antagonistic. I bet you GLUTEN is the underlying culprit in many of these inflammatory issues (some folks will disagree with me, so be it)

      All the “itises” in the world? inflammation.
      Even If I had never gotten a doc to finally agree with me that it was celiac, I would have gone GF and never looked back.

      I was right. And I have my life back as a result.
      I have my fingers crossed that my follow up biopsies this summer will show I have healed.
      My doc was waiting for me to be healthy enough to withstand the procedure.

  21. Irish Heart –

    You marvelous woman!! Thank you for sharing your story. I just sent this blog to several people!

    If you would have told me 18 months ago how blessed I would be by stumbling onto Gluten Dude’s blog one frustrated day – I would have laughed and said “no way”. Now, I sit here reading all these names I have grown attached to and think “HOW WOULD I DO IT WITHOUT THEM?” Their stories resonate with me and I don’t feel like the odd man/woman out.”

    Love that all the fear I sometimes feel in living with Celiac goes away every time I find myself on this comforting blog. You guys are all incredible.

    I am glad we are all on a healing path. Hopefully, more will be soon…


      1. Camille, you sweet thing…I just love you! and I thoroughly enjoy our visits either here in GD’s living room πŸ™‚ or on email and I am so happy we met, despite the circumstances.

        You’ve got an amazing spirit and attitude. xx

            1. and can we have a couple of margaritas too, please. (sniffle sniffle)

  22. What a wonderful, well-written post. I suffered long-term, nagging issues too (hypothyroidism, infertility, early menopause, GERD, hiatal hernia, chronic anemia, skin irritations, mouth sores) and was constantly told that I needed to take anti-depressants. When I said, “I’m not depressed – I fell like shit!” they just pressed harder on the anti-depressants. I’m happy to say that I never took them because I knew that was one issue that I wasn’t experiencing.

    When I went on a gluten challenge, I developed lovely symptoms like ataxia and arthritis which I’m still suffering with.

    Today, anytime I hear someone say things like “I just don’t know what’s wrong with me” or “I have this weird skin rash” or “I just get so tired/achy” or “I keep getting these migraines”, I reply with “You need to get tested for celiac disease!” Sadly, most of them look at me in horror and exclaim “I could never give up my pasta!”


    1. I understand. It is very difficult to get family and friends on board, but you know in your heart that you told them and that’s all you can do.

      I hope you continue to feel better and better, Darlena. Hang in there.

  23. IrishHeart,

    Thank you for opening your heart and sharing your gut wrenching story with us. You are an amazing woman and you have done so much to help others. Thank you for the incredible amount of time you devote to this community. Your name has become a staple in our house…”what would Irish do?”… “ask Irish” …”Irish said…”

    I am sorry about your painful journey. Your positive attitude and strong will is awe inspiring.

    Dude often says… maybe there is a larger plan that he has celiac…
    Maybe it’s to help others.

    Hugs and a big gluten free kiss coming your way!

    P.S. Ooh yay! Easy addition this time! πŸ˜€

    1. Can you get him to make those questions something like “what is
      your favorite color?” Man, those math questions kill me . πŸ™‚

      I appreciate your sweet comments, Mrs. D and I have to say that whenever anyone says they quote me at home, I get a little scared. LOL

      What saddens me most is…people I have “met on the internet” seem to hold my thoughts about celiac and gluten intolerance in higher regard than those who have known me my whole life. Sadly, I cannot seem to convince people I love to be tested…..not a single one…. sigh.

      I am grateful the Dude allows me to participate. It has been my pleasure getting to know so many of the contributing members of this community. And I tell your hubs all the time “you do good work, Kiddo” and I mean it!

      I am looking forward to seeing you both in NYC this summer!

  24. Dear Irish Heart,
    Thank you for sharing your story with all of us. Reading what you and so many others have been through makes me so ashamed and angry at the medical system which I am a part of.
    I just graduated from medical school 10 years ago, and this was at the juncture when the teaching that Celiac Disease was a rare disease changed to the realization that Celiac Disease is one of the most common genetic diseases in U.S.
    Dr. Fasano and others, like Dr. H (the neurologist whose name I can’t spell that you used in your reference) have published landmark papers about Celiac Disease in major medical journals over the last few years, but, unfortunately, a lot of doctors do not keep up with reading the journals.
    I will admit that I did not give much thought to Celiac Disease until I myself was diagnosed with it. Now I feel like the best thing I can do is talk to everyone who I can at the hospital where I work about Celiac Disease as often as I can…doctors, nurses, people who work in the cafeteria, my patients’ parents, the receptionists, etc. The lack of knowledge amongst my peers has been astounding. Just about a year ago I met a neurologist who had no idea what Celiac Disease was…
    I wish that I had some insider knowledge about how to make it better, but I do not. We are in the position, as patients, where we often need to educate our own doctors about gluten related issues. I guess that you know that if your doctor won’t listen to you, or believe your story when you tell him/herthat gluten is making you ill, that it is time to find another.
    I feel that I am rambling now, but I just wanted to let you know that I thank you and am on your side. If there is anything that I can do to bridge the gap between doctors and patients, please let me know!
    Thanks Irish Heart and Dude!

    1. Jess, I have read your blog articles and all your comments on here and I appreciate your wisdom and input. I think having a fellow celiac who is also a doctor is a “win-win” as you are an exceptional resource and advocate.

      As I have told my GI doc—who actually apologized to me on behalf of his colleagues and his profession when I first became his patient–do not feel bad!! They do not teach this stuff in medical school, i know.

      But, please…. do enlighten your colleagues at every opportunity. We all keep fighting the good fight. We’re in this together!

      Please continue to share with us on here—I look forward to your comments….. and frankly, I was hoping I would “see you” today! πŸ™‚

      Thanks again,Jess.

  25. IH!!!
    Pounce hug!
    You were the first when I came to celiac.com that said ” I know exactly what’s happening!!! It’s ok!!!! You are not crazy!!!
    You gave me hope that I would start to feel better when nobody else could. Such a f$&king long time it has been. I have such PTSD that reading your post took my breath away. I don’t even want th think back to that time but it is a good reality check once in a while.
    You can’t appreciate what you have until you have almost lost it all.

    1. “You can’t appreciate what you have until you have almost lost it all.”

      Ain’t that the truth, dear Ada!!

      Hugs right back to youl! πŸ™‚
      I often think of you and I hope you are continuing to heal.

      I, too, have those PTSD moments and I shudder and cast them off. You and I both spent many nights walking round and round our homes in burning pain, crying quietly…. so we could give our hubs a chance to get some sleep. Having someone else VALIDATE those symptoms made it somewhat less horrible for me. Terrible way to bond, but that is ironically, how I have met some of the best people I know.

      That was a long time ago, dear girl but it is indeed a painful reminder of what we endured. I cannot believe sometimes what we went through. I call that time in my life “Gluten Head Hell.” It’s the working title of my book. (copyrighted, here this day by IH) πŸ™‚

      People do not realize the full blown consequences of undiagnosed celiac and so, even though it is difficult to dredge it all up, I will tell my story again and again if it helps just one person who sees it and says “That’s me! “.

      Oh Ada, I am so thrilled to” see you” again and as always, I send you all good wishes!! take good care of yourself !! xx IH

  26. Hi Irish Heart,

    Thanks so much for your post. I cannot figure out why the medical community is so resistant to learning about this disease, taking it seriously and diagnosing it. It seems to me that this attitude is against the Hippocratic Oath!

    I am married to a physician, so on my journey was treated with a little more respect at the doctors office though I still had many shrugs and ‘I don’t knows’. My oldest daughter was sick from age 8 to 16. She was severely anemic. The iron meds helped her hematocrit hover just below normal which doctors just shrugged about. She had no energy and could barely carry her backpack up the stairs at school. Everyone thought she was just being a dramatic teenager. She struggled with depression. Ate voraciously. Began cutting and chose some poor friends. We had her in therapy, seeing doctor after doctor trying to figure out what was wrong. Just after turning 17 she attempted to take her life with Tylenol. She ended up in the psych unit at the hospital for safety. They diagnosed her bi-polar. We were at our wits end trying to find the key to help her be healthy once again. We signed her in to a therapeutic school where she could continue her education and be safe. As we were checking her out of the hospital to take her away a doctor said, ‘have you had her checked for Celiac?’ My husband and I had never heard of it. We took her to the therapeutic school and asked them to please have her tested for Celiac Disease. Luckily, there was a great pediatric GI nearby. Her tests were off the charts! The school was able to accommodate her diet and the change was miraculous! So much so that the whole healthcare system associated with the school reevaluated and changed their dietary program.

    I would love to tell you that it was an easy road after that, but there were a number of bumps while she healed. However, at 25 today she is a remarkable young lady. I am beyond proud of her and her ability to overcome such a hurdle. I cannot say that CD was 100 percent of her problem, but the diagnosis and the gluten free diet changed her life to the point that she was able to come out of the fog and eventually see clearly to be a happy, healthy, productive citizen. She definitely was NOT bi-polar, the swings were gluten driven, and she no longer struggles with depression.

    The whole family was tested for CD. My other two daughters also have it. My middle daughter told me that she thought that everyone felt the same way she did so she never complained. Life pain free has been a blessing for her! Neither my husband nor I have CD and we will never know since embracing the GF diet. My experience with my daughters helped me choose to be as educated as possible about CD and the GF diet. I now manage a local support group because I do not want anyone to suffer the agony of watching their child suffer the way I did. I educate constantly, but struggle to reach the medical community, which also includes dietitians. I get new members all the time who were just given a printout off the internet about the GF diet. To me that is inexcusable!

    One thing I have not seen anyone mention is that there are great local support groups all over the country. (no, not everywhere, but getting better.) Just like this online community, they offer wonderful support. Most importantly, they offer a knowledge of the local medical community and can steer you in the right direction in choosing a doctor that is knowledgeable. The group also knows the best places to shop for the best prices. It is worth it!

    I am thankful my daughters are lucky enough to have gotten this far with few other autoimmune diseases. They are amazingly good and capable about the GF diet despite being in college. I wish great blessings to all of you who struggle. Remember what others have said: YOU ARE NOT ALONE!!!! This community is just awesome- maybe because we have all been through hell and back again! That is a bond that those trendy folks can’t begin to understand!!

    1. I am so glad to hear she is doing well now!
      As her Mom, I can only imagine how you suffered watching your daughter spiraling down like that. I have met a few people who told me their bipolar and depressive symptoms disappeared entirely off gluten and my doctor and I wonder how many people are told they have mental health issues when in fact, it is gluten-fueled. I kept insisting I was not mentally ill , that it was something organic happening to me, but I am sure a few of those docs felt otherwise.

      I told one psychiatrist I know about this gluten connection and gave her some Pub med articles to read (which she graciously accepted and she is gluten intolerant herself!) but she never made the connection. Celiac can also cause eating disorders and because she deals with young people with this issue, she has promised to screen them all for celiac from now on.

      One step forward, every time we tell our stories.

      and thank you , GFMom for all you are doing!! One book I highly recommend to the “newbies” among us is Real Life with Celiac Disease by Melinda Dennis and Daniel Leffler. Fabulous resource.

  27. Shelly Valente

    So many of us have watched parents suffer and then pass on never knowing the cause of all their pain and illnesses. At least now we know, even if after many years of being misdiagnosed, what we have. Hopefully, in the next generation the medical field will also get on board. Would love to see some naturalist doctors who work on the body as a whole, but of course my medical insurance will only pay for the conventional “here’s a prescription” type of medical treatment.

  28. Just read an article in the NY Times….
    “the United States is far and away the world leader in medical spending, even though numerous studies have concluded that Americans do not get better care.

    Whether directly from their wallets or through insurance policies, Americans pay more for almost every interaction with the medical system. They are typically prescribed more expensive procedures and tests than people in other countries, no matter if those nations operate a private or national health system. A list of drug, scan and procedure prices compiled by the International Federation of Health Plans, a global network of health insurers, found that the United States came out the most costly in all 21 categories β€” and often by a huge margin.”

    Yup, gonna take a lot of work to change the “status quo”.

    1. That is brutal. Here is Canada, we have more affordable care, but the flip side of that is that we can’t choose who we go to see. I spent a whack of money (and I do mean a whack… as in, I could have bought a pretty nice car instead) to see an “integrative medical specialist” that was not funded through our health care system, because no one in the traditional medical community could help.

      1. I understand! I am not exaggerating when I say my husband and I spent nearly $30K out of pocket on testing, visits to various doctors, massage/physio therapy, “natural remedies” from naturopaths, acupuncturists and integrative med docs—during the years we searched for answers and relief from the debilitating and chronic pain I was in — in both the mainstream medical and alternative med worlds. All for nothing.

        When people complain about the high price of gluten free flours and products, I have to control myself. You see, I gladly pay 5.95 for a loaf of GF bread or some brown rice flour –since that is minuscule compared to what has been spent in search of “treatments”. that did not work.

        At first, I was VERY angry and I felt a bit foolish for having tried all that, but the truth is— I did what I had to do to try and get my life back..

        1. I hear ya, Irish. Here’s what I tell myself about that. We do the best we can and when we know better we do better. Maya Angelou, I think. It’s only money, right? Ultimately, I see each test, trial, experiment as leading me to where I am now, which is a much better place than I was yesterday.

          1. Agree..totally..on all counts!!….and that makes you one smart cookie, in my book.

            Cheers, hon–I so love your attitude! πŸ˜‰

  29. Wow, IrishHeart! What a fantastic blog. πŸ™‚ (thanks, GF Dude, for giving her the floor)

    I haven’t been on this site in a while due to work keeping me busybusybusy, but I’m glad I’m back and thrilled you’re still here and sharing your experiences. I went through the same thing on my trip through the Celiac diagnosis hell. I still find that most of my doctors still don’t know enough about the disease and the impact it has on all aspects of my health. Doctors have to avoid ordering unnecessary tests, but I want my general practitioner to figure out all of the negative ways in which the disease has affected my body. When an adult is diagnosed, it should be standard, don’t you think?

    Keep sharing!!!

    1. Hi Doro!
      Yes, follow up care is absolutely necessary. I was thrilled to find a
      new GI doc who has been wonderful with follow up testing (as all celiacs should have done) and I have not even gone back to the PCP doc at all.
      So nice to “see” you again! πŸ™‚
      Take care, IH

  30. What a frustrating topic. What an amazing group of people reaching out to help one another! Thank you Irish Heart for sharing so openly your experiences and knowledge. And Dude, yet again, thank you for building a platform that supports us all.

    1. Why hello, Miss Freeky!
      It’s always good to “see” you and I have to come visit your blog again very soon….to see what’s new in your world. You’re a doll.

  31. When I got my blood drawn on Wed. for my follow up visit with my GI, the receptionist at the lab asked me about the “celiac code” on my paperwork. Chit chat , chit chat ensues…..and she reveals she has terrible acid- producing GERD that comes up in her throat like vomit and out her nose!!

    I say…ask for a celiac panel. Who is your GI doc? she says: Dr .R….he saved my life.
    my heart skips a beat.

    Did he now? I ask…and how did he do that?
    Oh yes, he found a TUMOR in my stomach 5 years ago.!!

    Uh huh….and then what? You have horrible GERD uncontrolled by meds right?
    oh, Yes. It;s terrible, she says.

    I tell her my saga very quickly and end with “well, he may have found your tumor through the tests he loves to do
    but he left me to die”. She looked horrified.

    I told her to call my guy, his name is on that slip!!…. and I walked away.

    I go inside the lab and the only one on duty is the phlebotomist I told you all about…… oh man.
    She is so brain fogged and “has fibro pain ” and I gave her my doc’s
    number last year. She did nothing. She is stooped over from pain, her hair is white and paper thin like mine was and I feel so bad for her…
    and she stuck me horribly, as usual leaving a blue bruise. I made sure she got the labels on the tubes correctly this time (she has messed it up before)

    If I can see these walking celiacs…I want to know…what the hell is going on here??? argh!

Leave a Comment

Your email address will not be published. Required fields are marked *

Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

Follow me on this journey

I hate to drive alone

Download my app

And live a better gluten-free life

Send me a message

I'm all ears

Please enter your name.
Please enter a valid email address.
Please type your message.

Β© 2024 Gluten Dude: The Naked Truth About Living Gluten Free | Legal Stuff

Scroll to Top