New Research On Ncgs

[Pegleg84]

Hi Guys,

 

So there's a lively debate going on with some friends over on the Facebooks regarding a recent study that claims to to have shown that Non-Celiac Gluten Sensitivity doesn't actually exist. I see a lot of flaws in this study, and we've been bouncing back and forth the debate between scientific proof and "feeling" better.

 

Anyway, here are links to a few articles on the study. We all know a million-times more about Celiac and Gluten sensitivity than most people. I want to see what we think about it:

(If anyone can get access to the actual study data, that would be very useful)

 

--Open Original Shared Link (this one got the ball rolling)

 

"Analyzing the data, Gibson found that each treatment diet, whether it included gluten or not, prompted subjects to report a worsening of gastrointestinal symptoms to similar degrees. Reported pain, bloating, nausea, and gas all increased over the baseline low-FODMAP diet. Even in the second experiment, when the placebo diet was identical to the baseline diet, subjects reported a worsening of symptoms! The data clearly indicated that a Open Original Shared Link effect, the same reaction that prompts some people to get sick from Open Original Shared Link and Open Original Shared Link, was at work here. Patients reported gastrointestinal distress without any apparent physical cause. Gluten wasn't the culprit; the cause was likely psychological. Participants expected the diets to make them sick, and so they did."

 

 

--Open Original Shared Link

 

"It is still not clear, in other words, that there is an actual association between consuming gluten and GI symptoms. Individuals may firmly believe that they have such an association, but we know from countless historical examples and experiments that such firm beliefs can form in the absence of a true association.

 

The second possibility that needs to be seriously considered is that in some people who are self-diagnosed with NCGS, they are reacting to something else that is common in gluten-containing foods. If this is the case, then gluten is an innocent bystander. This would be very important to discover, for obvious practical reasons."

 

--Open Original Shared Link

 

"Now several studies hint that so-called gluten sensitivity might not always be caused by gluten. In some cases, the problem may be entirely different proteins—or even some carbohydrates. “We’re so used to dealing with gluten as the enemy, but it might actually be something else,” says David Sanders, who teaches gastroenterology at the University of Sheffield in England. Joseph Murray, a gastroenterologist at the Mayo Clinic in Rochester, Minn., agrees: “I’m starting to feel more uncomfortable calling it nonceliac gluten sensitivity. I think it might be better to call it nonceliac wheat sensitivity.” "

 

 

So, go at it. I think we can probably tear this study apart. While it might have some truth to it, it seems a little dangerous to suddenly declare that NCGS doesn't exist. Some people might drop the diet completely and cause themselves a lot of unccessary pain. We all know that Celiac/Gluten intolerance  is much more complcated than "eat gluten: feel bad; Stop gluten, feel good." it takes weeks and months and symptoms are different for everyone.

 

Looking forward to a lively debate (or am I preaching to the choir here)

 

Cheers

Peg

[BlessedMommy]

I can definitely see the dangers in people quickly taking a study like this at face value. There are a lot of people who didn't get a DX for whatever reason (doctors refused, no insurance, non-classical symptoms, bad medical advice, false negative tests, etc.) who really do have severe issues with gluten and have to be 100% gluten-free.

 

I had to chuckle a little bit at the end of the article when it said that, "Will people accept the science or will they keep on buying gluten-free products that they don't need?" Unfortunately, science or no science, I can't go start scarfing down glutenous bagels without consequence. Of course, in my case, celiac was never ruled out due to my failed gluten challenge. 

 

There are many people who don't have severe symptoms, but have some vague idea that their brain fog or tiredness might be due to gluten and then they self-diagnose. These people often don't follow a gluten-free diet strictly at all, just a "gluten light" diet. Perhaps they were the people that the article was referring to.

 

 

I wonder if deciding that NCGS doesn't exist will improve the diagnostic rates for celiac. I've wondered if most people who thought that they had NCGS actually had celiac, but weren't diagnosed. We all know that celiac is a grossly underdiagnosed condition.

[IrishHeart]

Well, let’s look at this rationally.

The study was peer-reviewed and published.
The conclusions of the study…. warrant further investigation. That’s it.

“The problems lie in the complexity of wheat and the ability of its carbohydrate as well as protein components to trigger gastrointestinal symptoms, the potentially false assumption that response to a gluten-free diet equates to an effect of gluten withdrawal, and diagnostic criteria for coeliac disease. Recent randomized controlled re-challenge trials have suggested that gluten may worsen gastrointestinal symptoms, but failed to confirm patients with self-perceived NCGS have specific gluten sensitivity. Furthermore, mechanisms by which gluten triggers symptoms have yet to be identified.”

>>>. This does not entirely “negate gluten sensitivity” -- it raises doubts about some people who claim to have it..

However, even the celiac researchers have determined that the FODMAP diet has been extremely beneficial for people with various gastrointestinal diseases and there are studies now that suggest that NCGS could actually be a wheat sensitivity–as in some component of wheat is causing the symptoms— not necessarily gluten. (that study was out of Stanford) and appeared in Living Without magazine this month:

“MYTH #4 Non-celiac gluten sensitivity is caused—of course—by gluten.

FACT Experts aren’t sure.
The term gluten sensitivity refers to individuals who don’t have celiac disease but whose symptoms improve while on the gluten-free diet, says Nielsen Fernandez-Becker, MD, clinical assistant professor of gastroenterology and hepatology and associate director of the Celiac Management Clinic at Stanford Hospital. But gluten might not be to blame; it could be a different component of wheat.
“Clearly, more research is needed to sort this out,” she says. “The mechanisms by which gluten causes symptoms are not well understood. It’s not even clear whether gluten is the culprit in this condition. Wheat sensitivity may be a more appropriate name.”

ALSO,
There are other researchers, like Dr. Fasano who believe in NCGS as a clinical entity whose recent published collaborative study also discusses the FODMAPs/celiac/wheat allergy/NCGS conundrum..

” Recent studies raised the possibility that, beside gluten [13] and wheat ATIs [40], low-fermentable, poorly-absorbed, short-chain carbohydrates [21] can contribute to symptoms (at least those related to IBS) experienced by NCGS patients. These new findings need corroboration through additional studies involving larger numbers of subjects. If these studies will confirm these new findings, they will probably prompt a change in nomenclature from NCGS to wheat sensitivity to reflect the fact that, beside gluten, other components of wheat may be responsible for the symptoms reported by NCGS patients.”

Open Original Shared Link

See the problem here?

But until all that data is examined, people should read all the science, all the research and look at the various gastro disorders before proclaiming “gluten sensitivity does not exist” or that this study is wrong or right.

It exists, of course, but there are probably many people who have some other gastro disorder (such as this problem with FODMAPs) that keeps them from feeling better because they assume it’s NCGS and they have never been tested for anything else.

But, as usual, the vast majority of people rush to judgement from reading a headline, posting it to social media and then the feeding frenzy begins.

The internet is full of opinions, mean- spirited people and gobs of false information.

I honestly do not know how you guys can stand all that nonsense “out there”…on twitter, etc...I have a hard enough time myth busting on here and GD's site as it is....and honesty, this is when I am glad I am a dinosaur  and limit my doses of social media.

[GottaSki]

I have a couple FunnyPage friends that made the mistake of popping off regarding the study without understanding what it actually said (I doubt they even read the article they provided links for, because it was in very simple English).  I may or may not have overwhelmed them with understanding what was actually written -- oops

[Pegleg84]

Irish, you're awesome! This is the kind of objective yet experienced analysis I was looking for. One study casting doubt on NCGS does not mean it doesn't exist, it means something else might be going on in some cases, and it needs a lot more study. The problem is that as much as scientific peer-reviewed research is valuable and contributes to overall understanding, one study isn't the final word on an issue.

 

The FODMAPS diet is interesting, and honesty I should look into it more. Sounds like it could be helpful for some people with Celiac too.

 

I've been having a pretty healthy/informed debate, but it's kind of a back and forth between people who have issues with gluten. and people who figure it must be in our heads.

[Pegleg84]

A question that came up: anyone know anything about the guy who did the study?

[BlessedMommy]

One thing that I've noticed about gluten-free living is that generally this diet gets picked apart, judged, and cross examined more than just about any other.

 

I mean, generally people with any kind of other dietary restriction, be it medical or moral or just because they think a food is bad, don't get nearly as much flack for it, as the gluten-free'ers do. I notice that I don't see articles saying that the soy free diet is a fad. I avoid shrimp, lobster, pork, etc. for religious reasons and I don't get much, if any, flack for that.

 

I know lots of people who avoid milk, eggs, chocolate, etc. and aren't allergic to any of them.

 

It seems when it comes to debate about diets and which is best, people would do better to cut each other a little slack. I agree with you, Irish, I'm not a fan of social media debates on stuff like this.

[IrishHeart]

A question that came up: anyone know anything about the guy who did the study?

Professor and Director of Gastroenterology at The Alfred and Monash University, having previously been Professor of Medicine and Head of the Eastern Health Clinical School. He is a Past-President of the Gastroenterological Society of Australia and was the inaugural Chair of IBD-Australia.

 

He graduated with First Class Honours from Monash University and pursued training in Gastroenterology at The Alfred Hospital in Melbourne and at the John Radcliffe Hospital in Oxford, UK. He was awarded an M.D. from Monash University in 1985 on work performed in Oxford on mucosal immunology in inflammatory bowel disease. After 3 years at the Australian National University as a Research Fellow, he was appointed to the University of Melbourne Department of Medicine at The Royal Melbourne Hospital as Senior Lecturer, and later as Associate Professor and Deputy Director of Gastroenterology.

 

From a background of research in epithelial cell biology, he now runs a large program of translational research and has active clinical interests in inflammatory bowel disease, coeliac disease and irritable bowel syndrome. A major focus of his work is the use of diet to control gut symptoms and influence outcomes in chronic intestinal conditions. He was awarded the Distinguished Research Prize by the Gastroenterological Society of Australia in 2010.

[IrishHeart]

Just to add to what I said, I see that Jules Shepard spoke to Dr. Fasano about this and she writes:

 

"As predicted, the media have latched onto a new study which they say shows that non-celiac gluten sensitivity (NCGS) may not exist at all, and thus that gluten-free for anyone but diagnosed celiacs is just a fad.

In anticipation of this media response, I invited Dr. Alessio Fasano of Center for Celiac Research onto my radio show, The Gluten-Free Voice, on Monday. 

He explained clearly how this study does not disprove the validity of NCGS at all.

This study was described as: "37 subjects took part, all with self-reported gluten sensitivity who were confirmed to not have celiac’s disease." 

(Aside from the fact that it's one of my pet peeves for people to erroneously call it "celiac's disease ...") 

 

(IH note: I see I am not the only one who feels that way. lol)

 

Jules:

"This statement itself proves a fundamental flaw in its presumptions: results were based on a small number of "self-reported" people with gluten sensitivity. 

 

As Dr. Fasano says, these patients very likely had IBS, not gluten sensitivity. Thus, it makes sense that their symptoms would improve on a low FODMAP diet, but not necessarily be affected by gluten.

 

For more on this study, and to hear Dr. Fasano's complete explanation of NCGS, get comfy and have a listen to the podcast of my radio interview which you can download here: 

Open Original Shared Link

[kareng]

I think there is this common misconception that NCGS is 1 illness/syndrome. It is just a sort of catch-all for people who don't have diagnosed Celiac but seem to have issues with gluten. It is likely that it is many different things with real causes. So, in a way, there is no such thing as NCGS because, when it is studied more, people will have will have FODMAP Syndrome or XYZ part of wheat intolerance, or early stage/poorly diagnosed Celiac. etc.

Another issue is all these people self-diagnosing or being diagnosed by dubious pseudo-medical testing. These people may actually have Celiac but are never diagnosed medically. They call themselves NCGS, but they aren't sure what they are.

[GottaSki]

Edited to remove improper quote.

I know in our family -- we have two technical NGCS because they tested negative for antibodies -- antibodies are not perfect and the percentages of accuracy do not tell the whole story -- I likely would have tested negative much of my life -- because at age 43 with complete villous atrophy I only tested "weak positive" to tTG (both IgA and IgG) and AGA IgA -- moderately positive to AGA-IgG with low positive EMA titer.

My only child to have a positive antibody test also had severe - Marsh IIIB and C damage yet only barely positive on DGP-IgG. One of my other kids is diagnosed Celiac without ever having a positive antibody test. With our multiple copies of celiac genes, symptoms and response to diet the remaining kid and grand likely have celiac disease, but we will never know as a challenge simply is not possible.

Here's my take -- until very recently there was not even a term NCGI nor NCGS -- much more research is needed in all areas of functional digestive disorders -- all we can do is operate on the best science available today.

So....get properly tested and then remove gluten if you suspect it is an issue -- but ALWAYS get tested first.

Edited to add...I should never say never. My hope is that one day they'll be able to put an endoscopic sample in a petri dish to test for celiac disease rather than having our bodies be subjected to the dreaded challenge.

[gatita]

I'm glad to see Dr. Fasano chimed in on this. I was wondering what he thought.

 

Being a journalist myself (and a careful one), I can only cringe when I read my fellow reporters jumping to these kinds of ridiculous conclusions when it comes to "science." Yikes!

 

*hides head in sand*

[IrishHeart]

"A zoologist and conservation biologist by training, Ross has nurtured a passion for journalism and writing his entire life. Ross weaves his insatiable curiosity and passion for science into regular posts and articles "

 

He's not a journalist. He's very intelligent, yes, but he's not a journalist.

 

The study concluded : “In contrast to our first study… we could find absolutely no specific response to gluten."

and

"On current evidence the existence of the entity of NCGS remains unsubstantiated," Biesiekierski noted in a Open Original Shared Link in December to the journal Current Allergy and Asthma Reports.

 

His headline  which was:

Non-Celiac Gluten Sensitivity May Not Exist

is misleading and not relevant to the study discussed in the article.

 

This is not the same as what the researchers concluded regarding the symptom- resolution of these few people on the  FODMAPs diet.

 

If this " journalist"had been in my journalism class, I would have given him a failing grade for a sensationalist headline. Clearly, people need to read the article, read the Pub Med articles he links to and then conclude that...well, here is no conclusion, really. One study does not negate "gluten sensitivity" as a clinical entity. It just further proves there's a need for people to get to the bottom of what causes their gastro symptoms.

 

It's not always gluten. It's not always "just gluten" either. 

[gatita]

^ Yup!

 

Agreed, Irish.

[kareng]

I know in our family -- we have two technical NGCS because they tested negative for antibodies -- antibodies are not perfect and the percentages of accuracy do not tell the whole story -- I likely would have tested negative much of my life -- because at age 43 with complete villous atrophy I only tested "weak positive" to tTG (both IgA and IgG) and AGA IgA -- moderately positive to AGA-IgG with low positive EMA titer. 

 

My only child to have a positive antibody test also had severe - Marsh IIIB and C damage yet only barely positive on DGP-IgG.  One of my other kids is diagnosed Celiac without ever having a positive antibody test.  With our multiple copies of celiac genes, symptoms and response to diet the remaining kid and grand likely have celiac disease, but we will never know as a challenge simply is not possible.

 

Here's my take -- until very recently there was not even a term NCGI or NCGS -- much more research is needed in all areas of functional digestive disorders -- all we can do is operate on the best science available today. 

 

So....get properly tested and then remove gluten if you suspect it is an issue -- but ALWAYS get tested first.

 

Edited to add...I should never say never.  My hope is that one day they'll be able to put an endoscopic sample in a petri dish to test for celiac disease rather than having our bodies be subjected to the dreaded challenge.

I don't think you understood what I was saying. I don't doubt that many people have something that may not be Celiac related but is a sensitvity to gluten or something that makes it look like its a gluten issue. A lot of the research seems to be pointing to several different issues that make a person NCGS. I don't think NCGS is an actual distinct disease - it's a bunch of different ones. It's like a big box to throw all the people in with gluten sensitvity that haven't been diagnosed as celiac. they just have to figure out what the different reasons for gluten sensitivity are & then they can go into thier own place on the shelf.

One of the ones they are looking at is someone who is a celiac but for some reason, they weren't diagnosed - doctor error, not sensitive enough tests, going gluten-free before testing, etc. one is FODMAPS. One is a different part of wheat that they may be sensitive to. Maybe some others I haven't heard about.

So, right now, we don't know why NCGS people are sensitive to gluten. So we don't have a better name for it. When we have more sensitive Celiac tests, tests for FODMAPS, tests for other proteins in the wheat, etc.- then we may have individual names for every reason under the broad headline of Gluten Sensitivity.

[GottaSki]

I don't think you understood what I was saying. I don't doubt that many people have something that may not be Celiac related but is a sensitvity to gluten or something that makes it look like its a gluten issue. A lot of the research seems to be pointing to several different issues that make a person NCGS. I don't think NCGS is an actual distinct disease - it's a bunch of different ones. It's like a big box to throw all the people in with gluten sensitvity that haven't been diagnosed as celiac. they just have to figure out what the different reasons for gluten sensitivity are & then they can go into thier own place on the shelf.

One of the ones they are looking at is someone who is a celiac but for some reason, they weren't diagnosed - doctor error, not sensitive enough tests, going gluten-free before testing, etc. one is FODMAPS. One is a different part of wheat that they may be sensitive to. Maybe some others I haven't heard about.

So, right now, we don't know why NCGS people are sensitive to gluten. So we don't have a better name for it. When we have more sensitive Celiac tests, tests for FODMAPS, tests for other proteins in the wheat, etc.- then we may have individual names for every reason under the broad headline of Gluten Sensitivity.

 

Oh...I understood...perhaps I should not have tagged my thoughts to yours

[Pegleg84]

Oh, here we go. This was aparently just a survey, but seems to show that most people who qualify themselves and NCGS did not take the time to get tested for Celiac properly, or don't follow the gluten-free diet strictly enough. Maybe 1 in 4 of respondents did rule out celiac disease and still respond well to a strict gluten-free diet.

 

Open Original Shared Link

[BlessedMommy]

I agree, I think that most people who think of themselves as NCGS really didn't rule out celiac. The way I describe myself (gluten free after a failed gluten challenge) is that I don't really know what I have. I don't know 100% that I have celiac and I don't 100% know that I don't have it. So since I don't know what I have, I'm going to be careful and follow the diet as strictly as I can, since 2 out of the 3 possible things that I could have could kill me if not managed properly.

 

I also agree that it's a little premature for people to decide that a medical condition doesn't exist based on a studied sample of 37 people. If they're going to rule it out as a medical condition, they need a really large study, like with thousands of people.

[BlessedMommy]

Okay, another thought that occurred to me about this study....

 

I know that a lot of folks on this forum take days to recover from one glutening. So, how does a few days on each day and then rapidly switching between a high gluten and a gluten free diet prove anything? In other words, participants could be still recovering from the prior glutenings, days into the gluten free diet.