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  • Jefferson Adams
    Jefferson Adams

    Are Doctors Missing 90% of Celiac Disease Cases?

    Reviewed and edited by a celiac disease expert.

      If a new study by Canadian nutrition researchers is any indication, most cases of celiac disease remain undiagnosed.


    Caption: Is Celiac Disease Seriously Under-Diagnosed? Photo: CC--US Army

    Celiac.com 10/20/2017 - Are doctors even getting close to diagnosing the actual number of cases of celiac disease? Or are they missing the vast majority?

    Researchers have said for some time that there are far more people with celiac disease than are being diagnosed, and that the vast majority of cases go undiagnosed.

    So, just how far are we from the actual number? Well, if a new study by Canadian nutrition researchers is any indication, doctors are very far from diagnosing most cases.

    The team studied the blood work of nearly 3,000 people, and their conclusions are stunning. They say that ninety percent of celiac cases go undiagnosed.

    How could this be? One reason is that even classic celiac disease symptom, such as abdominal pain, bloating, gas, diarrhea, anemia and weight loss can mimic other conditions. Less classic symptoms such as fatigue, low vitamin C, D and calcium levels can be misleading.

    Ahmed El-Sohemy, a professor of nutritional science at the University of Toronto, wanted to see whether celiac disease results in subpar nutrition because of poorer absorption of vitamins and minerals. But to find out, he needed Canadian data on the frequency of undiagnosed celiac disease.

    To that end, El-Sohemy and his colleagues checked blood samples from more than 2,800 individuals in Toronto. One group had an average age of 23, and the other 45. Among their findings is likely ~1%, with 87% of cases being undiagnosed. These findings suggest the need for better screening in high genetic risk groups.

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    There really is no excuse for the percentage of undiagnosed individuals to be so high. There is a simple blood test out there that measures the certain antibody found in persons with celiac. I was one of those persons. It took 10 years for a doctor to finally give me this test. I think anyone who goes to a doctor complaining of chronic diarrhea should be given this lab test to rule out celiac.

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    Unfortunately from what I have read and been told by doctors, the test only yields a positive result for less than 50 percent of people who have celiac, as in my case. It took 24 years of doctors and specialists not being able to diagnose me and my having to self diagnosis. I came to the diagnosis after researching my celiac related skin condition, dermatitis herpetiformis, explained my observations to a GI celiac specialist and two dermatologist, one of whom has celiac and the same skin condition. I agree that it should not be so difficult to diagnose celiac disease. There is also a great need for awareness campaigns; I'm tired of people deriding my need to eat a gluten-free diet as a fad.

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    Damn rights! I went to my doctor as a teenager, trying to explain my symptoms, which would have been the brain fog that would wham my head. She ended saying she would send me to a psychiatrist. b%$@#! 30 years later my sister figures the gluten/Celiac disorder. I spent 30 years with gluten ruining my life. After my sister's diagnosis, I get genetic testing done and there it was in black and white.

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    I have a friend in Australia in the medical field and she says they test for celiac disease first with symptoms of diarrhea, skin conditions, etc. It's American doctors that are behind the times. BTW, I self diagnosed my celiac disease. I once told a doctor that if I had waited for a doctor to diagnose me I'd be dead by now.

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    There really is no excuse for the percentage of undiagnosed individuals to be so high. There is a simple blood test out there that measures the certain antibody found in persons with celiac. I was one of those persons. It took 10 years for a doctor to finally give me this test. I think anyone who goes to a doctor complaining of chronic diarrhea should be given this lab test to rule out celiac.

    My problem was not chronic diarrhea; it was being deferred from blood donations due to anemia. But once I was diagnosed, I realized the only reason I had called in sick for work for several years was due to diarrhea. It just wasn't that often. The problem is that there are also people who don't have the most common symptoms, but they do still have celiac, which makes it even harder to diagnose.

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    On 10/24/2017 at 5:49 AM, Guest corrie said:

    Damn rights! I went to my doctor as a teenager, trying to explain my symptoms, which would have been the brain fog that would wham my head. She ended saying she would send me to a psychiatrist. b%$@#! 30 years later my sister figures the gluten/Celiac disorder. I spent 30 years with gluten ruining my life. After my sister's diagnosis, I get genetic testing done and there it was in black and white.

    I totally relate with that I've had epilepsy most of my life I'm 44 and the mystery symptoms that go with it dizziness, nystagmus, awkward gait, migraines.i first got sick at 8 years old have had these symptoms ever since and not a single Dr could figure this out! I had to do this myself it pisses me off so much that all the suffering and praying to the porcelain God could have been fixed yeah I'm pissed!

     

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  • About Me

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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