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  • Jefferson Adams

    New Guidelines Urged for Diagnosis of Non-Celiac Gluten Sensitivity

    Jefferson Adams
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    Reviewed and edited by a celiac disease expert.

    Photo: CC--decar66
    Caption: Photo: CC--decar66

    Celiac.com 11/25/2015 - People with Non-Celiac Gluten Sensitivity (NCGS) suffer intestinal and non-intestinal symptoms when they consume gluten-containing food, but they do not have either celiac disease or wheat allergy.

    Photo: CC--decar66Because there is currently no known NCGS biomarker, it is important to develop reliable standard procedures to confirm NCGS diagnosis. A recent scientific paper examines expert recommendations on how the diagnostic protocol should be performed for the confirmation of NCGS.



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    The researchers contributing to the paper include Carlo Catassi, Luca Elli, Bruno Bonaz, Gerd Bouma, Antonio Carroccio, Gemma Castillejo, Christophe Cellier, Fernanda Cristofori, Laura de Magistris, Jernej Dolinsek, Walburga Dieterich, Ruggiero Francavilla, Marios Hadjivassiliou, Wolfgang Holtmeier, Ute Körner, Dan A. Leffler, Knut E. A. Lundin, Giuseppe Mazzarella, Chris J. Mulder, Nicoletta Pellegrini, Kamran Rostami, David Sanders, Gry Irene Skodje, Detlef Schuppan, Reiner Ullrich, Umberto Volta, Marianne Williams, Victor F. Zevallos, Yurdagül Zopf, and Alessio Fasano. They are variously affiliated with 26 research institutions worldwide.

    They have come up with a series of recommendations known as the Salerno Experts' Criteria.

    Under that criteria, a comprehensive diagnosis should measure the patient's clinical response to the gluten-free diet (GFD) and assess the effect of a gluten challenge after a period of treatment with the GFD. Such an evaluation uses a self-administered instrument that relies on a modified version of the Gastrointestinal Symptom Rating Scale.

    In this way, the patient identifies one to three main symptoms that are quantified on a rating scale ranging from 1 to 10.

    Patients then follow a double-blind placebo-controlled gluten challenge by ingesting 8 grams of gluten per day for a one-week challenge followed by a one-week washout of strict GFD, and then moving to the second one-week challenge.

    The gluten-challenge should contain cooked, homogeneously distributed gluten. A variation of at least 30% of one to three main symptoms between the gluten and the placebo challenge should be seen to differentiate between a positive and a negative result.

    These guidelines are designed to help the clinician to reach a firm and positive diagnosis of NCGS and facilitate the comparisons of different studies.

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    When the nutritionist put me on an elimination diet to test for allergies, I had to go without questionable items for three weeks to ensure that my system had cleared out potential allergens. I have read that reactions to gluten can be delayed for up to three days, so one-week challenges seem to be a poorly-designed test that are destined to muddy the water.

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    I had a DNA test done after searching for answers for 37 years. It came back that I have 2 genes which predispose to gluten sensitivity. (Subsequently both my mother & sister came back with celiac genes....) I cut ALL gluten out of my diet, cosmetics, etc. and shortly thereafter I quit throwing up after eating. When I am cross contaminated during eating out I turn into The Exorcist and it's not pretty among other things. The THOUGHT of having to do a 'gluten challenge' completely turns me off and repulses me. I avoid gluten every chance I get - and these JOKERS want me to ingest it just to prove to them that I react to it??? I DON'T THINK SO! The DNA test gave me ALL THE INFORMATION I need! It's either in the genes or not... I get so ill from gluten exposure the thought of what they are suggesting is CRAZY!

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    I agree with the other comment. While this may work for fast respondents to a gluten free diet (who get sick immediately upon eating gluten), some people are not going to see a significant resolution in their symptoms for weeks or months. This seems to be true of some celiacs too so why hold NCGS suffers to such a high standard?

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    I agree with Gene Ann. A one week wash out is a critical flaw in this protocol. I know I still have symptoms for more than a week from being accidentally cross contaminated once. Eating gluten every day for a week? It would take closer to a month for my body to recover. How do they expect accurate results? Humans are not test tubes. You can't just wash them out and reuse them.

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    I wonder about the the testing method as well. I am allergic to wheat, and sensitive to gluten. I did a gene test that did not prove with the current gene defining of celiac, however if I told you everything that I have- symptom wise it would be celiac. I think we are a long way from learning the truth. Testing is often funded in one direction to what the outcome is expected. I think that celiac should be one illness that should be based on symptom and outcome on a GFD.

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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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