Celiac.com 08/25/2014 - Numerous people without celiac disease claim to suffer from celiac-like gastrointestinal symptoms when they consume wheat, rye or barley products, and claim that avoiding these products makes them feel better. However, even though many people make this claim, this is largely a self-reported condition. Some data have supported the idea of gluten sensitivity, but the most recent and more complete data seem to indicate that the real culprit might not be gluten, but fermentable, poorly absorbed short-chain carbohydrates known as FODMAPs.

Photo: CC--Rick DikemanIn fact the same researcher whose early data supported the idea of non-celiac gluten sensitivity also headed the follow-up study that showed no effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates.

In this third study, that researcher, Peter Gibson at Monash University in Canada set out to assess patients who believe they have NCGS. The study team included Jessica R. Biesiekierski, PhD, RN; Evan D. Newnham, MD, FRACP; Susan J. Shepherd, PhD, APD; Jane G. Muir, PhD, APD; and Peter R. Gibson, MD, FRACP. They are variously affiliated with the Department of Gastroenterology, Eastern Health Clinical School, and the Department of Gastroenterology, Central Clinical School at Monash University, The Alfred Hospital in Melbourne, Australia, and with the Translational Research Center for Gastrointestinal Disorders, Herestraat in Leuven, Belgium.

The team put out advertisements calling for adults who believed they had non-celiac gluten sensitivity (NCGS) and were willing to participate in a clinical trial. Respondents were asked to complete a questionnaire about symptoms, diet, and celiac investigation. They received 248 responses, and completed surveys on a total of 147 people. There were 17 men and 130 women, averaging 43.5 years of age.

The team eliminated seventy-two percent of the respondents for inadequate exclusion of celiac disease (62%), uncontrolled symptoms despite gluten restriction (24%), and not following a GFD (27%), alone or in combination. A full 15% of respondents had received no testing or examination for celiac disease.

Gluten avoidance was self-initiated in nearly half of respondents; while it was prescribed by alternative health professionals in 21%, by dietitians in 19%, and by general practitioners in 16%.

Of 75 respondents who had received duodenal biopsies, nearly one-third had no gluten intake, or inadequate gluten intake, at the time of endoscopy. Inadequate celiac investigation was most common if gluten-avoidance was self-initiated (69%), alternative health professionals (70%), general practitioners (46%), or dietitians (43%).

A total of 40 respondents fulfilled criteria for NCGS. Those folks showed excellent knowledge of and adherence to a gluten-free diet. However, a full 65% of those who met criteria for NCGS showed intolerance to other foods.

Just over 1 in 4 respondents self-reporting as NCGS fulfill criteria for its diagnosis, while gluten-avoidance without adequate exclusion of celiac disease is common.

In 75% of respondents, symptoms are poorly controlled despite gluten avoidance. These results also stress the importance of testing for other food sensitivities, and of celiac screening and evaluation for those people claiming non-celiac gluten-sensitivity.

Clearly, more study needs to be done to determine if non-celiac gluten sensitivity exists, or if there are other possible causes for the symptoms.

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The team put out advertisements calling for adults who believed they had non-celiac gluten sensitivity (NCGS) and were willing to participate in a clinical trial. Respondents were asked to complete a questionnaire about symptoms, diet, and celiac investigation. They received 248 responses, and completed surveys on a total of 147 people. There were 17 men and 130 women, averaging 43.5 years of age.

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