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RealClearScience: Non-Celiac Gluten Sensitivity May Not Exist

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
May 14, 2014
Non-Celiac Gluten Sensitivity May Not Exist

In 2011, Peter Gibson, a professor of gastroenterology at Monash University and director of the GI Unit at The Alfred Hospital in Melbourne, Australia, published a study that found gluten, a protein found in grains like wheat, rye, and barley, to cause gastrointestinal distress in patients without celiac disease, an autoimmune disorder unequivocally triggered by gluten.

Double-blinded, randomized, and placebo-controlled, the experiment was one of the strongest pieces of evidence to date that non-celiac gluten sensitivity (NCGS), more commonly known as gluten intolerance, is a genuine condition.

By extension, the study also lent credibility to the meteoric rise of the gluten-free diet. Surveys now show that 30% of Americans would like to eat less gluten, and sales of gluten-free products are estimated to hit $15 billion by 2016 -- that's a 50% jump over 2013's numbers!

But like any meticulous scientist, Gibson wasn't satisfied with his first study. His research turned up no clues to what actually might be causing subjects' adverse reactions to gluten. Moreover, there were many more variables to control! What if some hidden confounder was mucking up the results?

He resolved to repeat the trial with a level of rigor lacking in most nutritional research. Subjects would be provided with every single meal for the duration of the trial. Any and all potential dietary triggers for gastrointestinal symptoms would be removed, including lactose (from milk products), certain preservatives like benzoates, propionate, sulfites, and nitrites, and fermentable, poorly absorbed short-chain carbohydrates, also known as FODMAPs. And last, but not least, nine days worth of urine and fecal matter would be collected. With this new study, Gibson wasn't messing around.

37 subjects took part, all confirmed not to have celiac disease but whose gastrointestinal symptoms improved on a gluten-free diet, thus fulfilling the diagnostic criteria for non-celiac gluten sensitivity.** They were first fed a diet low in FODMAPs for two weeks (baseline), then were given one of three diets for a week with either 16 grams per day of added gluten (high-gluten), 2 grams of gluten and 14 grams of whey protein isolate (low-gluten), or 16 grams of whey protein isolate (placebo).

Each subject shuffled through every single diet so that they could serve as their own controls, and none ever knew what specific diet he or she was eating. After the main experiment, a second was conducted to ensure that the whey protein placebo was suitable. In this one, 22 of the original subjects shuffled through three different diets -- 16 grams of added gluten, 16 grams of added whey protein isolate, or the baseline diet -- for three days each.

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 nocebo effect, the same reaction that prompts some people to get sick from wind turbines and wireless internet, 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. The finding led Gibson to the opposite conclusion of his 2011 research:

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

Instead, as RCS reported last week, FODMAPS are a far more likely cause of the gastrointestinal problems attributed to gluten intolerance...

Read more: http://www.realclearscience.com/blog/2014/05/gluten_sensitivity_may_not_exist.html
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Is Gluten Sensitivity Real?
by CHRIS KRESSER

You’ve probably seen the recent glut of sensational headlines in the media proclaiming that non-celiac gluten sensitivity is some kind of widespread collective delusion—simply a figment of the imagination of anyone who claims to experience it.

These stories point to a new study which found that a group of patients with irritable bowel syndrome (IBS) were not sensitive to gluten. The researchers who performed this study had previously published a paper showing that IBS patients were sensitive to wheat, and that removing wheat from their diet led to an improvement of symptoms.

However, in this new study, the authors specifically isolated gluten and found that there was no difference in symptoms between the patients eating high-gluten diets and those eating low-gluten diets.

This is a significant finding, but to claim that it proves that non-celiac gluten sensitivity doesn’t exist is both inaccurate and irresponsible. It’s a great way to get clicks and generate attention, but it’s an extreme distortion of what the study actually found.

Why this study doesn’t disprove gluten sensitivity
First, this study examined the effects of gluten in a specific population: people with irritable bowel syndrome. Even if it is true that gluten sensitivity is no more common in people with IBS than in people without IBS (which is premature to conclude on the basis of a single study), it does not overturn the large body of evidence that links non-celiac gluten sensitivity to a variety of health problems ranging from allergies to schizophrenia to autism spectrum disorders.

Second, this study does not suggest that people with IBS—or anyone else with gluten sensitivity—should feel free to start chowing down on wheat. In fact, it suggests the opposite. For the first week of the trial, all patients were put on a gluten-free diet that was also low in FODMAPs (a class of carbohydrates present in wheat, as well as other foods).

After this lead-in period, the participants were assigned to one of three groups: a high-gluten diet, a low-gluten diet, and a placebo. Those on the high gluten diet were given 16 grams per day of purified wheat gluten; those on the low gluten diet were given 2 grams per day of purified wheat gluten plus 14 grams per day of whey protein isolate; and those on the placebo diet were given 16 grams per day of whey protein isolate.

The majority of participants experienced a significant improvement of symptoms during the 7-day gluten-free, low FODMAP lead-in period. But there was no difference in symptoms between the high gluten, low gluten, or placebo groups during the subsequent treatment period. In other words, patients did react adversely to wheat, but they did not react to isolated gluten.

This of course suggests that something other than gluten in the wheat was causing the problems patients experienced. We now know that there are several compounds in wheat other than gluten that could be to blame. These include not only FODMAPs, but also agglutinins (proteins that bind to sugar), prodynorphins (proteins involved with cellular communication), and additional proteins that are formed during the process of wheat digestion, such as deamidated gliadin and gliadorphins (aka gluteomorphins).

Another possibility is that both the placebo and low-gluten groups were reacting to the whey protein. Whey is >99% casein- and lactose-free, which is what most people who are sensitive to dairy react to. However, it is certainly possible for people to react adversely to whey, and in my experience this is more common with patients with digestive problems. If some of the “placebo” and low-gluten patients were, in fact, sensitive to whey, then that would invalidate the results of the study.

Read More At: http://chriskresser.com/is-gluten-sensitivity-real
 
Messages
15,786
Pure whey has a similar affect on me as gluten, and seems to be a common irritant for GI and immune issues. I used to do protein shakes that were almost entirely whey, and eventually had to give them up as they were causing body-wide swelling.

They should've picked something less problematic, but that was probably the point.
 

Ren

.
Messages
385
I'm suspected to have endometriosis, according to several gyncologists.

(I write suspected because I was supposed to have laproscopy, as recommended by a senior gynocologist, but then I was essentially blackballed from all medical care / services (including emergency room services), following what seems to have been a campaign by a general practitioner that my symptoms were all imagined. I tried to officially report all of this, but the doctor in charge said there would be no investigation bc he checked with the other doctors, and they all said they didn't do anything wrong.)


I just wanted to add though, since many people may not know (I didn't for many years), that a gluten-free diet can make an extreme difference in pelvic pain for women with endometriosis. A non-dairy diet is also often recommended, as well as little-to-no red meat. Perhaps this is related, in part, to inflammation?


Regarding FODMAPs though, the Clear Science article says, "Common sources of FODMAPs are bread products, chocolate, energy bars that include artificial sweeteners, mushrooms, beans, apples, and anything with high fructose corn syrup."

I know IBS is commonly associated with endo (and endo with ME/CFS). And with these, as well, SIBO - small intestinal bacterial overgrowth, for which it's advised that one avoid things that aid fermentation: sugar (including limited fruit), yeast, fungi, vinegar, alcohol - seems very similar to FODMAPs.

Anyway, it's been sometime since I've read about this area, but thought I'd at least add the above bit of info to the gluten and FODMAP discussion mix, should it help anyone.


I noticed this recently as well:

Abstract (2012)


AIM:
Pelvic pain affects 4% to 39% of women and accounts for 10-40% of all outpatient gynecologic visits. The etiology of painful endometriosis-related has not been fully delineated. No studies have been published concerning gluten-free diet administered to achieved relief of painful symptoms endometriosis-related. The aim of this retrospective study was to evaluate the effectiveness for the outcomes of endometriosis-related pain and quality of life of gluten-free diet in a follow-up of 12 months in patients with chronic pelvic pain endometriosis-related.

CONCLUSION:
In our experience, painful symptoms of endometriosis decrease after 12 months of gluten free diet.

http://www.ncbi.nlm.nih.gov/pubmed/23334113
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Pure whey has a similar affect on me as gluten, and seems to be a common irritant for GI and immune issues. I used to do protein shakes that were almost entirely whey, and eventually had to give them up as they were causing body-wide swelling.

They should've picked something less problematic, but that was probably the point.

Pure whey affects me more than gluten. The conclusions in the above commentary/blog are completely flawed as all the study proved was that gluten was not a specific cause of the GI issues and that there is a possibility that pure whey irritates the gut too. For any conclusions, we also need to consider a double blinded trial of pure whey (with a more sensible placebo).
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Real Clear Science said:
Each subject shuffled through every single diet so that they could serve as their own controls, and none ever knew what specific diet he or she was eating. After the main experiment, a second was conducted to ensure that the whey protein placebo was suitable. In this one, 22 of the original subjects shuffled through three different diets -- 16 grams of added gluten, 16 grams of added whey protein isolate, or the baseline diet -- for three days each.

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!

Real Clear Science said:
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. The finding led Gibson to the opposite conclusion of his 2011 research:

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

I think some of the conclusions made in the 'Real Clear Science' article (opening post) in relation to the research paper are utterly inappropriate, and also vastly overblown on the basis of a single paper.

If there are no differences between groups, this does not indicate that the effects are 'likely psychological'. That's a really crappy piece of journalism, and a huge leap to make without any evidence to back it up. It seems like wishful thinking (bias) on the part of the journalist.

It seems to me that the whey protein was an inappropriate control, because people don't often have large quantities of whey in their diet. The body may potentially react to large quantities of whey just because it's not used to it. The shorter 3 day trial, which tested baseline diet (no added protein) doesn't seem long enough to test for effects. (How long does diet-related inflammation take to diminish once the cause it removed? 1 day, 3 days or longer?)


I think this might be the paper they are referring to, but it's a 2013 study, not a recent study, so I'm not certain:

No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates.
Biesiekierski JR, Peters SL, Newnham ED, Rosella O, Muir JG, Gibson PR.
Gastroenterology 145:320-8.e1-3.
2013 Aug
Epub 2013 May 4.
doi: 10.1053/j.gastro.2013.04.051.
http://www.ncbi.nlm.nih.gov/pubmed/23648697

You wouldn't know if from reading the 'Real Clear Science' article, but the results from this study actually suggest that both gluten and whey cause gastrointestinal symptoms:

Biesiekierski et al. said:
Results: In all participants, gastrointestinal symptoms consistently and significantly improved during reduced FODMAP intake, but significantly worsened to a similar degree when their diets included gluten or whey protein. Gluten-specific effects were observed in only 8% of participants. There were no diet-specific changes in any biomarker. During the 3-day rechallenge, participants' symptoms increased by similar levels among groups. Gluten-specific gastrointestinal effects were not reproduced. An order effect was observed.

So, reading the following extract from the paper (taken from the above quote), the conclusions of the 'Real Clear Science' article (i.e. that the reactions to gluten were psychological) seem spurious:

"In all participants, gastrointestinal symptoms consistently and significantly improved during reduced FODMAP intake, but significantly worsened to a similar degree when their diets included gluten or whey protein."


I would suggest that adding any type of protein to a diet may result in a short-term mild inflammatory reaction, and that studies like these need to be carried out over a longer period to let any initial reactions settle down.

This is demonstrated by the peanut allergy therapy whereby patients (even with extreme allergies) are very gradually introduced to nut proteins, in tiny incremental steps, until their bodies become used to the protein and stop rejecting it. However, if introduced to a larger amount of the protein the initial reaction would be severe.
 
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barbc56

Senior Member
Messages
3,657
Are there physical tests that indicate gluten sensitivity?

I would think self reporting would only be useful if compared with phisiological indicators.
Barb
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Are there physical tests that indicate gluten sensitivity?

I would think self reporting would only be useful if compared with phisiological indicators.
Barb

Sometimes stool tests will show this but not always. The best test is to eliminate all grains and processed foods that way cross contamination is avoided.

If you have one food intolerance, other food intolerances are common. That's why the paleo diet is so popular.

If you read the stories of those who've responded, you'll see how varied this is. I know celiacs who can eat gluten without reacting until they've had too much. Their reactions are as varied as the ncgs folks.

Tc ... x
 

Ren

.
Messages
385
Do women doubled-up in pain, collapsed on the floor, unable to stand or walk or utter more than a few words, near blacked-out completely for over an hour count as self reporting?
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Do women doubled-up in pain, collapsed on the floor, unable to stand or walk or utter more than a few words, near blacked-out completely for over an hour count as self reporting?

Yes, but only because we're women. If we complained of having a limp "x"
they would've rushed to find a solution. Lol. Tc .. x

Ps. Without even googling this, I'm 100% positive that this was treated as a psychological / sexual dysfunctional problem for women until they finally looked for the problem.
 
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xchocoholic

Senior Member
Messages
2,947
Location
Florida
I can't believe how many celiacs I know with nondigestive problems who's doctors never picked up on this. I'm hearing why from some of my doctors tho. Most will respond to my celiac diagnosis by saying " Well I'm sure that helped your digestion.". To which I respond "Yes but my ataxia vanished too". At which point they look confused.

When I first mentioned my ataxia symptoms in my celiac support group several asked me what it was and realized that they'd had or still have it too.

Banging my head. Tc .. x
 

SDSue

Southeast
Messages
1,066
Caution: Rant Ahead

When the hell will these academics start believing people? Genetics are proving that we all have unique responses to various insults. I don't care if 99 people respond one way to a given stimulus and I respond differently. It doesn't make me "wrong" or "hyper vigilant" or any other psychological garbage term. It makes me unique. Being in the 1% is a terrible place to be - for now!

Thus endeth the rant. Carry on.
 

jepps

Senior Member
Messages
519
Location
Austria