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  • Jefferson Adams

    Is Your Doctor Asking Enough Questions About Your Gluten-free Diet?

    Jefferson Adams
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    Celiac.com 12/05/2016 - Symptomatic suspected gluten exposure is common among patients with celiac disease on a gluten-free diet. A gluten-free diet is the only recommended treatment for celiac disease. Although anecdotal evidence suggests that suspected gluten exposure is common among celiac patients following a gluten-free diet, there is not a great deal of hard data to support that view.

    A team of researchers recently set out to assess the prevalence and characteristics of gluten reactions in people with celiac disease on a gluten-free diet. The research team included JA Silvester, LA Graff, L Rigaux, JR Walker, and DR Duerksen. They are variously affiliated with the St Boniface Hospital in Winnipeg, Canada, the College of Medicine at the University of Manitoba in Winnipeg, Canada, and with the Celiac Research Program at Harvard Medical School in Boston, MA, USA.



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    Their team prospectively enrolled adults with biopsy proven, newly diagnosed celiac disease. They then conducted a survey related to diet adherence and reactions to gluten, both at study entry and at 6 months. To measure celiac disease symptoms and gluten-free diet adherence, they used T Celiac Symptom Index, Celiac Diet Assessment Tool (CDAT) and Gluten-Free Eating Assessment Tool (gluten-free-EAT). Of the 105 patients enrolled, 91% reported gluten exposure less than once per month, while the average CDAT score was 9 (IQR 8-11), which suggests good dietary adherence.

    Two out of three patients reported suspected symptomatic reaction to gluten. Most, 63 percent, did not suspect gluten consumption until a reaction occurred. Meanwhile, just under one-third (29 percent) reported that problems happened when ordering in a restaurant.

    Thirty percent of patients say that gluten was consumed from incidental contact, while 10 percent said it was due to eating a major gluten ingredient.

    Average time to symptom onset was 1 hour, though onset ranged from 10 minutes to 2 days. Symptoms lasted about 24 hours on average, and ranged from 1 hour to 8 days. Symptoms typically included abdominal pain (80%), diarrhea (52%), fatigue (33%), headache (30%) and irritability (29%).

    Even with good dietary compliance, most celiac patients following a gluten-free diet suffer from regular adverse reactions to gluten. Eating away from home continues to pose the major risks for accidental gluten exposure.

    The team recommends that physicians treating celiac disease patients should include regular questions regarding gluten reactions as part of their assessment of gluten-free diet adherence.

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    My HMO doctor does not make the effort to find out just how I am doing with my celiac disease unless I report an incident that requred emergency room care. And needed follow-up care and billing issues. I am pretty much on my own.

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    Guest Jefferson Adams

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    My HMO doctor does not make the effort to find out just how I am doing with my celiac disease unless I report an incident that requred emergency room care. And needed follow-up care and billing issues. I am pretty much on my own.

    I fear your experience is probably more the rule than the exception. Too many doctors seem to basically ignore their celiac patients unless there is some critical issue or complaint. Let´s hope that changes.

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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 2,500 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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