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Gluten-free Celiac Patients Frequently Experience Symptomatic Gluten Exposure
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Acute symptomatic reactions to suspected gluten exposure commonly occur in patients with celiac disease who try to adhere to a gluten-free diet, most of whom do not suspect exposure occurred until symptom onset, according to research published in Alimentary Pharmacology and Therapeutics.
“This prospective cohort study has demonstrated that among individuals with celiac disease trying to follow a gluten-free diet, symptomatic reactions to suspected gluten exposure were common, of short duration, occurred soon after suspected gluten exposure, and were frequently experienced in the context of eating at restaurants or other peoples’ homes,” investigators wrote. “These findings reflect the unavailability of practical tools for persons trying to adhere to a strict gluten-free diet to objectively assess whether a food contains gluten or if they have consumed gluten.”
To investigate the prevalence and features of symptomatic reactions to gluten exposure in celiac patients trying to adhere to a gluten-free diet, researchers from the University of Manitoba and St. Boniface Hospital in Winnipeg, Canada, partnered with an investigator from Harvard Medical School’s Celiac Research Program to survey 105 adults with newly diagnosed celiac disease (69% women; median age, 37 years).
Participants reported their diet adherence and reactions to gluten at enrollment and at 6 months by completing the Celiac Symptom Index (CSI), Celiac Diet Assessment Tool (CDAT) and Gluten-Free Eating Assessment Tool (GF-EAT).
Overall, 26% of respondents reported no gluten exposure, 66% reported they were exposed to gluten less than once a month, and the cohort’s median CDAT score of 9 indicated gluten-free diet adherence was “adequate.”
Moreover, 66% reported they had a suspected symptomatic reaction to gluten, and among them 63% did not suspect gluten exposure until symptoms occurred, while 29% suspected gluten exposure after having problems ordering at a restaurant.
The median time from suspected exposure to symptom onset was 1 hour, although 13% reported their symptoms occurred at least 12 hours after exposure. Regarding amount of gluten exposure, 29% reported exposure resulted from cross-contact, 4% from crumbs, 16% from a minor ingredient, 4% from a moderate ingredient, 10% from a major ingredient and 36% were unsure. Uncertainty of exposure to gluten increased with time to symptom onset.
The most common symptoms included abdominal pain (80%) and diarrhea (52%), although fatigue (33%), headache (30%), bloating (30%) and irritability (29%) were also reported.
“It is striking that over 60% of participants did not suspect that they had consumed gluten until they experienced a reaction,” the researchers wrote. “Given that symptomatic reactions are experienced by many persons on a gluten-free diet and may be markers of gluten ingestion, follow-up by health care professionals should include assessment of reactions to suspected gluten exposure in addition to diet review.” – by Adam Leitenberger
Disclosures: Duerksen reports he has served as a speaker for Abbott Nutrition and Shire.
Perspective
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Anthony J. DiMarino, Jr., MD
At present, lifelong adherence to a strict gluten free diet is the only proven therapy for celiac disease. Silvester and colleagues, using validated questionnaires, have suggested that two-thirds of newly diagnosed celiac patients on a gluten-free diet reported symptoms most consistent with exposure to gluten. All patients had been referred to a dietitian and 82% had received specialized gluten-free diet information from a dietitian. Most of the exposure incidents were due to either cross contamination of alleged gluten-free food, or ingestion while eating out at restaurants or at peoples’ homes. This degree of exposure is consistent with what has been generally thought to be only a 50% compliance over time with a gluten-free diet.
Some of the causes for a lack of continued complete compliance to a gluten-free diet have been due to issues involving taste preferences, convenience, cost, social or religious reasons. However, even the most knowledgeable and dedicated celiac patients eventually have issues with compliance, generally because of cross contamination of non-gluten containing foods by gluten. Since the majority of patients in this study did not suspect they had consumed gluten until they had experienced reactions, it would be very helpful if some method of objective verification of prior gluten intake was possible.
Happily, patients and physicians may be encouraged by a new technology that allows the identification of quantifiable gluten in the stool or urine of celiac patients. Referred to in the Silvester article and subsequently reported in Gut is a technology that may allow for patients and physicians to obtain an objective analysis of gluten in urine 4 to 6 hours after a single gluten intake that should remain detectable for 1 to 2 days. This may aid celiac patients in their quest to either identify the cause of a reaction suggestive of their original celiac symptoms, or trace to a particular food or drink that may be contaminated with gluten. If reproducible, the Moreno study reported in Gut will help to objectively analyze and identify foods that may have greater than the current 20 parts per million required for gluten-free designation and protection from toxic levels of gluten for celiac patients.
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