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    Jefferson Adams
    Jefferson Adams

    Non-celiac Gluten Sensitivity: Fact or Fiction?

    Reviewed and edited by a celiac disease expert.

    Celiac.com 02/28/2013 - An entry in the Patient Journey section of the British Medical Journal highlights the confusion around non-celiac gluten sensitivity (Open Original Shared Link).

    Photo: CC--PerterJr1961In the entry, a person without celiac disease describes how, after years of unexplained health problems, a chance conversation on an internet forum led him to try a gluten-exclusion diet.

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    He claims he saw dramatic results: “Within a week of excluding gluten and lactose from my diet, all my symptoms had dramatically improved in just the same way as when I previously starved myself.”

    After accidentally eating gluten the symptoms returned “within hours.” Such dramatic relief of symptoms led him to seek out what he calls “proper diagnosis.”

    This, in turn, led him to Kamran Rostami, whose account of the condition supplements the patient’s story. Rostami says that the patient, like others had "negative immunoallergy tests to wheat and negative coeliac serology; normal endoscopy and biopsy; symptoms that can overlap with coeliac disease, irritable bowel syndrome, and wheat allergy.” Symptoms resolved on a gluten-free diet. Since there are no biomarkers, gluten sensitivity is the ultimate diagnosis of exclusion.

    However, these facts, along with the lack of a disease mechanism have left some clinicians unconvinced.

    Some, like Luca Elli are calling for aspects of gluten sensitivity clarified before doctors start “treating” people for this new “disease” (Open Original Shared Link).

    Elli asks some logical questions, such as "Is gluten sensitivity different from irritable bowel syndrome, or is it simply a variant that benefits from a common therapeutic approach?"

    To get an answer, many clinicians are looking to published literature (Open Original Shared Link). For example, a few randomized trials suggest that non-celiac gluten-sensitivity is a real condition, affecting 6% of nearly 6000 people tested in a Maryland clinic.

    A multi-center trial is currently recruiting people without celiac disease, but with gluten sensitivity for a challenge with gluten or placebo.

    Meanwhile, clinicians are advising that patients who have had celiac disease excluded through blood tests and duodenal biopsy be told that they may suffer from a newly recognized clinical condition which is not yet fully understood.

    In related news, a letter published this week by David Unsworth and colleagues describes an “explosion of requests” for serological testing since 2007, particularly from primary care physicians (doi:10.1136/bmj.e8120). They note that NICE guidance in 2009 has done little to reduce the requests.

    They also point out that, as the number of people being tested has risen, the rates of confirmed celiac disease has fallen to just over 1%, which is no better than rates achieved by random screening.

    They call for more targeted testing, limited to groups in whom detection rates are highest: children with failure to thrive, family history, or type 1 diabetes, and adults attending diabetes and gastroenterology clinics.

    However, such advice would seem to ignore cases like those described in the Patient Journey, cases where people with negative blood tests and biopsies benefit from a gluten-free diet.

    What do you think? Is non-celiac gluten-sensitivity a real condition? Do you or anyone you know come up negative on blood tests and biopsies, but suffer from gluten-sensitivity? How should doctors proceed? Share your comments below.

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    Guest Tom Sweeney

    Posted

    In answer to your question, I believe non-celiac gluten sensitivity is a real condition. I believe that gluten is the culprit in both celiac and non-celiac disease. Why some people get the actual disease and others get a lesser version (Non-celiac) is the mystery. Also I believe that gluten may be the cause of all autoimmune diseases. I say this because I have non-celiac gluten sensitivity since a young child (around 5 years old). I discover this after I was diagnosed with Ankylosing Spondylitis (AS) at the age of 66. After I had the AS diagnosis I began to read about the AS disease and found that celiac disease was linked to a lot of other autoimmune diseases.

    My theory on the connection is that immune system gets confused when fighting off the gluten culprit and without success and creates other attacks of autoimmune disorders such as Lupus & RA. Could this be possible that gluten is a major cause of most of our health care cost and sickness of individuals in America?

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    Guest Jim Broome

    Posted

    What I see here is a website dedicated to a particular condition, and then a clickbait question to get people who have already made their minds up that their condition exists to respond. There is no real information given here - it may be good journalism, but no-one should consider a small number of self-reporters with an axe to grind to be conclusive.

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    Guest Kenneth Blake

    Posted

    Patients who are diagnosed with non celiac gluten & wheat intolerance are still at risk for the same symptoms as patients who are diagnosed with celiac disease, so if you have reactions from the gluten-filled foods, then you should definitely follow a gluten-free diet.

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    Guest Jean
    In answer to your question, I believe non-celiac gluten sensitivity is a real condition. I believe that gluten is the culprit in both celiac and non-celiac disease. Why some people get the actual disease and others get a lesser version (Non-celiac) is the mystery. Also I believe that gluten may be the cause of all autoimmune diseases. I say this because I have non-celiac gluten sensitivity since a young child (around 5 years old). I discover this after I was diagnosed with Ankylosing Spondylitis (AS) at the age of 66. After I had the AS diagnosis I began to read about the AS disease and found that celiac disease was linked to a lot of other autoimmune diseases.

    My theory on the connection is that immune system gets confused when fighting off the gluten culprit and without success and creates other attacks of autoimmune disorders such as Lupus & RA. Could this be possible that gluten is a major cause of most of our health care cost and sickness of individuals in America?

    Have you have tried a gluten free diet for your AS and if so did it help? My partner has AS and I was wondering if a gluten free diet might help him (in addition to the vegan low fat diet that we are already on).

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  • About Me

    Jefferson Adams

    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. His articles, essays, poems, stories and book reviews have appeared in numerous magazines, journals, and websites, including North American Project, Antioch Review, Caliban, Mississippi Review, Slate, and more. He is the author of more than 2,500 articles on celiac disease. His university coursework includes studies in science, scientific methodology, biology, anatomy, physiology, medicine, logic, and advanced research. He previously devised health and medical content for Colgate, Dove, Pfizer, Sharecare, Walgreens, and more. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of numerous books, including "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

    >VIEW ALL ARTICLES BY JEFFERSON ADAMS

     


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