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Non-Celiac Gluten Sensitivity Not Holding Up to Scrutiny

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.

Sources:

 

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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16 Responses:

 
Jacqueline Jones
Rating: ratingfullratingfullratingemptyratingemptyratingempty Unrated
said this on
27 Aug 2014 2:19:45 PM PST
I don't agree with the conclusion. Dr. Michael Lam has identified some patients with advanced stages of adrenal fatigue syndrome (another illness doctors don't believe in), who have celiac symptoms after inhaling flour (e.g. from baking mix).

 
Terry J. Wood
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said this on
28 Aug 2014 1:59:23 PM PST
My diagnosis of non-celiac gluten sensitivity was made by physicians who are professors at the University of Pittsburgh School of Medicine. I am not a celiac. I don't have Chron's disease. (I've had blood tests, colonoscopies and a test requiring I drink barium).

I think my case is pretty solid proof that NCGS exists. Any physician researching this is welcome to contact me. I'd be happy to put them in touch with my doctors.

 
justmyopinion
Rating: ratingfullratingemptyratingemptyratingemptyratingempty Unrated
said this on
01 Sep 2014 4:38:57 AM PST
If you have numerous positive biopsies and don't have DQ2 or DQ8 genes, what term do doctors want to give it? Research on Pubmed shows a lot of newly found genes associated with celiac that have NOTHING to do with the two listed above. Is anyone writing articles on that?

As for FODMAP diet, was handed a copy by a new GI to follow last summer. Said no wheat and or dairy allowed, but you could have beer, raisin bran, whole wheat toast, spelt, oats, yogurt, cheese. Also couldn't have broccoli, onions, garlic, coffee and more. It was 1000s times worse in terms of limitations than a gf/cf diet. Didn't think it made sense and been gf for almost 15 years so I didn't risk it. Have come too far to ever go back to eating gluten if even medically prescribed. Sorry.

 
James
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said this on
01 Sep 2014 10:54:08 AM PST
This can hardly be called a study, it is more of a survey. I mean only 2/3 of the respondents were counted because the rest didn't complete the survey. Second statements like "uncontrolled symptoms despite gluten restriction" are vague. Does this mean gluten restrictions didn't help at all? Helped a bit? Most prescription medicines require the slightest of positive effects to be considered worth prescribing so why no the same with the GFD? I do agree people should do more to check for celiac before going on a GFD, at least the blood tests. You have a great site and it would be great to see you up the quality of your reporting and actually read and report on the study, not just the abstract. Also this is one research team, are there any others? It seems to to me this guy has a bit of a vendetta against NCGS.

 
Icha
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said this on
01 Sep 2014 12:53:41 PM PST
(1) Monash University is in Australia, not Canada.
(2) Can you really draw conclusions from a study that excluded 3/4 of potential participants? I'd guess that the remaining 1/4 had less severe symptoms anyway.
(3) not to be rude, but the main author is also the main author of the FODMAP diet, which is being commercialized as an app -- so he also has a vested interest in promoting FODMAPs over NCGS. In particular, if you read the abstract, the chosen 40 were overwhelmingly people who also identified other food sensitivities -- so they are people with sensitive stomachs, not people with a wheat/gluten problem.
The rating isn't because of the poor scholarship in the article, but because none of these questions are raised by the summary.

 
Jefferson
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said this on
02 Sep 2014 1:23:42 PM PST
Thanks for your correction, Icha! My oversight. I'll see that the article reflects the true location of Monash University.

 
GERTA FARBER

said this on
01 Sep 2014 2:04:17 PM PST
To Celiac.com AGAIN!

Concerning "Celiac, the Mysterious and the Medical Need for Gluten Free Diet"
I was shocked that you would publish these mistaken facts by writer Melissa Reed.
She writes that, "There are no tests or strict criteria to diagnose gluten sensitivity." There are several labs which have been diagnosing gluten sensitivity for many years now! My self diagnosis for Gluten intolerance was in 2002, and was verified by EnteroLab.com.
Dr. Ron Hogan has published "An Interview with Dr. Kenneth Fine of EnteroLab.com and the Intestinal Health Institute." Celiac.com- 10-9-13.

As for her warning about avoiding a gluten-free diet before seeing your doctor, it has been
suggested by several past celiac researchers that testing may not be necessary at all if a
gluten-free diet is successful in eliminating troubling side-effects.

 
admin
( Author)
said this on
01 Sep 2014 4:58:34 PM PST
As the article you mention in Journal of Gluten Sensitivity points out (An Interview with Dr. Kenneth Fine of EnteroLab.com and the Intestinal Health Institute), Dr. Fine's research hasn't been published, and is not generally accepted by the medical community.

 
michelle
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said this on
01 Sep 2014 5:15:14 PM PST
Weak, I say. This article and the studies outlined seem to assume that people with NCGS have only gastro-intestinal symptoms. Its simply not true. 147 people does not a conclusion make. Weak.

 
Cheryl
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said this on
01 Sep 2014 5:18:59 PM PST
Talk about a misleading headline and "study." I agree that it's more like a survey. If these people really wanted to discover the truth about non-celiac gluten sensitivity, they'd be testing things like cholesterol levels, reproductive hormones, serotonin levels. They'd be asking questions about improvement in symptoms related to migraine headaches, depression, anxiety, diabetes, thyroid issues, inflammation, arthritis, and infertility. They'd be looking at overall weight loss or weight gain. As far as other food sensitivities go: it's no secret that eliminating gluten very often makes other hidden sensitivities more noticeable. How many celiacs find out they have dairy issues once they eliminate gluten? And Dr. Fine's research is not generally accepted by the medical community? Big surprise. His research supports the notion that changing your diet can improve your health. Where's the money to be made in that? Sure, gluten-free bakeries are prospering, but not pharmaceutical companies. That reminds me, who ponies up the cash for medical research? Well, a great deal of the funding comes from pharmaceutical companies. Can you even imagine how much money they stand to lose if a change in diet eliminated the need for antidepressants, anti-inflammatory drugs, infertility treatments, and the like?

 
Janice
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said this on
01 Sep 2014 5:31:31 PM PST
I'm pretty amazed that the research team at Monash University in AUSTRALIA (not Canada) has a low FODMAP app and a booklet for sale. That just makes the entire "study" suspect.

 
celiacMom
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said this on
02 Sep 2014 5:58:03 AM PST
I think poeple misunderstand this research when applying it to diet. Also I agree with previous comments that FODMAP diet lists/instructions are inconsistent between practitioners. This is an evolving process. Folks that feel better when tey eat gluten free foods may indeed be because they are avoiding the FODMAPS in wheat etc. Which would make avoiding gluten part of the equation: where have you seen a FODMAP free food that has gluten?Also remember FODMAPs will irritate any intestine that already has issues, so probably is a good treatment for many GI problems, not just gluten sensitivity. I honestly think since is way behind in the celiac disease/gluten immuno-reactivity area, for personal experience I can thing of infinite hypothesis to test that have not been tested. I do not have celiac disease (per doctor) close family member does; I have seen many doctors and none has a clue what I have. Had a good time when I stop eating gluten a few years back, but as I get older, more and more things make me sick.

 
chris
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said this on
02 Sep 2014 7:24:02 AM PST
If you do not have celiac don't do the diet...it is only good for people who have the disease.

 
Ann
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said this on
02 Sep 2014 9:09:06 AM PST
NCGS is real. I HAVE two genes that make me that way. For those of you who think is does not exist are unenlightened.

 
Candice
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said this on
03 Sep 2014 12:37:23 PM PST
The study was funded by an Australian bread company.

 
Pamela
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said this on
23 Sep 2014 7:42:06 AM PST
I would contest the findings of this "study." Not only is it in conflict of interest with the revelation that the group is releasing a FODMAPs diet/app, it seems to me that the investigators did not take into account the myriad of other physical/neurological symptoms experienced by NCGS and celiac sufferers alike. Moreover, the intestinal symptoms that result from consuming gluten last for DAYS - over which time, according to the way this study was structured, it is completely conceivable that subjects would continue to report symptoms even during the days they were eating the low-to-no gluten diet.




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