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  • Jefferson Adams

    How Often Do You Get Exposed to Gluten?

    Jefferson Adams

    By Jefferson Adams •

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    Reviewed and edited by a celiac disease expert.

    People with celiac disease might get dosed with gluten more often than they realize. Photo: CC--Allen McGregor
    Caption: People with celiac disease might get dosed with gluten more often than they realize. Photo: CC--Allen McGregor

    Celiac.com 09/05/2016 - Currently, a gluten-free diet is the only recommended treatment for celiac disease. But, researchers don't know much about how effective the actually diet is, or exactly what constitutes the normal range of responses among persons with celiac disease on a gluten-free diet.

    To get a better idea, a team of researchers recently set out to study a group adults with biopsy proven, newly diagnosed celiac disease. The research team included J. A. Silvester, L. A. Graff, L. Rigaux, J. R. Walker & D. R. Duerksen, variously affiliated with the College of Medicine, University of Manitoba, Winnipeg, MB, Canada, the Celiac Research Program at Harvard Medical School in Boston, MA, USA, and the St Boniface Hospital, Winnipeg, MB, Canada.


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    The team had each patient complete a survey related to diet adherence and reactions to gluten at entry and 6 months. To measure celiac disease symptoms and gluten-free diet adherence, the team used the Celiac Symptom Index, Celiac Diet Assessment Tool (CDAT) and Gluten-Free Eating Assessment Tool (gluten-free-EAT), and they assessed a total of 105 participants, 91% of whom reported gluten exposure less than once per month, and showed an average CDAT score was 9 (IQR 8–11), consistent with adequate adherence.

    Two-thirds of the subjects reported suspected symptomatic reaction to gluten. For 63% of subjects, gluten consumption was only suspected after a reaction occurred. For nearly 30%, gluten consumption was the result of eating in a restaurant. Gluten consumed came from cross-contamination in 30% of cases, and from gluten as a major ingredient in 10% of cases. On average, symptoms began an hour after gluten consumption, running from 10 minutes on the low end to 48 hours on the high end.

    On average, when symptoms did occur, they lasted about 24 hours, on average; though they ranged from 1 hour to 8 days. Common symptoms included abdominal pain in 80%, diarrhea in 52%, fatigue in 33%, headache in 30% and irritability in 29% of patients.

    Adverse gluten reactions are common in people with celiac disease on a gluten-free diet. Eating away from home, especially at restaurants and other homes, carries the greatest risk for gluten exposure.

    The team encourages doctors who treat people with celiac disease to question their patients about adverse gluten reactions as part of their assessment of gluten-free diet adherence.

    How often do you get exposed to gluten? What happens?

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    Guest Jennifer

    I become violently ill after gluten exposure (think worst case of food poisoning you can imagine). I no longer eat out at restaurants at all, it's just too big of a risk. I'm hoping beyond hope that completely gluten free restaurants and cafes will become common. I believe hospitals and nursing homes will need to eventually have dual kitchens and dual staff, with color coded plates/trays so you can trust your food came from the proper kitchen. Gluten free needs are growing by leaps and bounds each day. This illness will not be going away any time soon.

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    Guest Lori

    My 11 year old son was "glutened" last month for the first time in 2 years. Yes, it was at a restaurant that assured me the grilled chicken, and fries from a dedicated fryer were gluten-free!

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    Guest linen
    I become violently ill after gluten exposure (think worst case of food poisoning you can imagine). I no longer eat out at restaurants at all, it's just too big of a risk. I'm hoping beyond hope that completely gluten free restaurants and cafes will become common. I believe hospitals and nursing homes will need to eventually have dual kitchens and dual staff, with color coded plates/trays so you can trust your food came from the proper kitchen. Gluten free needs are growing by leaps and bounds each day. This illness will not be going away any time soon.

    Funny you should say this illness is not going away anytime soon. Just the other day on the news they said cases of gluten sensitivity are decreasing. I thought...HA! What a crock!

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    Guest Carleen Koller

    Guest Carleen Koller

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    You may not know the answer to this. 19 years ago I was told I had a bad case of Celiac Sprue. I have done great on the diet. I had to have the gallbladder out as it stopped working. For a few years now I complained of feeling of stomach up set after eating. The doctor did the stomach emptying test which failed. In 3 hours the food had only gone down 20 percent. So now I have that problem. So can this be related to celiac sprue?

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    Guest admin
    You may not know the answer to this. 19 years ago I was told I had a bad case of Celiac Sprue. I have done great on the diet. I had to have the gallbladder out as it stopped working. For a few years now I complained of feeling of stomach up set after eating. The doctor did the stomach emptying test which failed. In 3 hours the food had only gone down 20 percent. So now I have that problem. So can this be related to celiac sprue?

    This would be a great question to ask your doctor. Also ask him to re-test you for celiac disease, as it does not go away, so you likely still have it. A gluten-free diet is the only treatment.

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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, and has authored more than 2,500 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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