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New Guidelines Urged for Diagnosis of Non-Celiac Gluten Sensitivity

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.

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.

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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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5 Responses:

 
Gene Ann
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said this on
30 Nov 2015 2:51:38 PM PDT
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.

 
Eloise
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said this on
30 Nov 2015 8:09:01 PM PDT
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!

 
James
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said this on
30 Nov 2015 11:32:08 PM PDT
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?

 
Christy
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said this on
01 Dec 2015 4:30:34 AM PDT
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.

 
Zoe
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said this on
01 Dec 2015 7:06:24 AM PDT
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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It took me 20 years or more Barry so I wouldn't claim any great insight on this I had a 'eureka' moment, up until then I was walking around with multiple symptoms and not connecting any dots whatsoever. It is very, very difficult to diagnose and that's something that's reflected in so many of the experiences detailed here. A food diary may help in your case. It helped me to connect the gaps between eating and onset. It could help you to track any gluten sources should you go gluten free. It is possible for your reactions to change over time. As to whether its celiac, that's something you could explore with your doctor, stay on gluten if you choose to go that way. best of luck! Matt

I took Zoloft once. Loved it until it triggered microscopic colitis (colonoscopy diagnosed it). Lexapro did the same. However, I have a family member who is fiagnosed celiac and tolerates Celexa well.

Thanks for the update and welcome to the club you never wanted to join! ?

Jmg, I am glad you were able to come to the realisation that the culprit was in fact gluten. For me its not so simple. IBS runs in the family, as do several food intolerances. Its just in the last while that I can finally reach the conclusion that for me its gluten. The fact that it is a delayed effect-several hours after, made it harder. Friday I had some KFC, felt great. Saturday evening felt sleepy, Sunday felt awful and my belly was huge. I think I have gone from mildly sensitive to full blown celiac over the course of five years-if that possible. Thanks for all your help.

I thought I'd take a moment to provide an update, given how much lurking I've done on these forums the last year. It took a long time, but I've since had another gastroenterologist visit, many months of eating tons of bread, and an endoscopy where they took several biopsies. I have to say, the endoscopy was a super quick and efficient experience. During the procedure they let me know that it looked somewhat suspicious, causing them to take many biopsies, and then did comprehensive blood work. About a month later, I received a call telling me that the TTG came back positive a second time, and that the biopsies were a mix of negative (normal) results and some that were positive (showing blunting of the villi). As a result, I've been given a celiac diagnosis. It's been about a month now that I've been eating gluten free. Not sure if I'm really feeling all that different yet. It's a bit twisted to say, but in some way I was hoping for this diagnosis ? thinking how nice it would be to have an explanation, a plan of action, and feeling better. It's certainly no small change to be totally gluten free, but I'm hopeful.