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Non-celiac gluten sensitivity does NOT exist.

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  1. Having just returned from a month in France, I found it very interesting to see how little gluten-free there was and how much 'regular' baking was being eaten by everyone, with seemingly no difficulties.

    1 Reply
    1. re: ClaireLS

      so what. you can make the same individual small scope anectodal worthless strawman observation here.

    2. I'd be skeptical and "follow the money" on all these studies. Who's funding them?

        1. re: JTPhilly

          The old discussion is no longer valid. Read about the new study and its author.

          1. re: law_doc89

            yeah I read it, my opinions on prior thread remain the same - it was never the gluten

            1. re: law_doc89

              That thread does discuss the new Monash paper.

          2. A family member has been able to manage his arthritis mostly drug free due to going gluten free. When he breaks the rules, has pizza or a sandwich, he feels it. So to say that it does not exist is either a lie or calling on my family members personal experience and integrity. Trust me, when he says, "I'm ganna pay for this tomorrow" he means it.

            4 Replies
            1. re: Bellachefa

              the study speaks to gastrointestinal issues, not RA

              1. re: JTPhilly

                The title of this thread suggests non-celiac gluten sensitivity does NOT exhist. It is that and the article, including the articles title, I am responding to.

                And I did not define the type of arthritis, so why would you jump to conclusions?

                1. re: Bellachefa

                  Funny, I was going to point out that Rheumatoid arthritis conclusion as well...

                  By the way, my joints are also worse when I eat wheat (osteoarthritis from before I was a teenager here). So's my digestive problems. I never claimed it was the gluten, but I *am* claiming it's the wheat.

              2. re: Bellachefa

                Lots of folks pay for eating wheat who aren't gluten sensitive, especially with arthralgia. He may be better just due to cutting starches, too.

                Been there, done that myself. Aches, pains, joint stiffness, asthma, irritable bowel, GERD are among things that almost immediately disappear or are greatly improved when folks stop eating starches.

              3. Sorry, but a study with all of 37 participants is not a large enough sample group to prove.....um. Anything.

                20 Replies
                1. re: Ttrockwood

                  scientifically no it is not a big enough control group

                  BUT -

                  all participants were self-reported gluten intolerant and did not display any sensitivity to gluten - so what it does prove is that people are misguided and misled into self diagnosis or being misdiagnosed.

                  1. re: JTPhilly

                    I think they're drawing the wrong inference from improvements that come from cutting out grains. I got them, too, but not due to gluten issues, I eat high gluten, but low starch foods no problem.

                      1. re: magiesmom

                        A lot of low carb wraps are high in gluten.

                        1. re: mcf

                          Oh I see. I thought you meant other things for some reason.
                          I was thinking about Field Roast.

                          1. re: magiesmom

                            I used to eat seitan when I was eating vegan or vegetarian, too, but not currently.

                              1. re: magiesmom

                                I ate all sorts of ersatz meat crap when I was on those stupid diets.

                                Seitan could be made palatable, but I sure don't go looking for it now. I never heard of Field Roast; YECCH.

                                I think if you're desperate for, or willing to eat grain "meat," your body is telling you to go out for a ribeye steak.

                                1. re: mcf

                                  I agree about the "ersatz meat". And I'm a looong time vegetarian.

                                  When I gave up meat (decades ago) I never missed it. Never craved ribeye or bacon. And I find the "faux meats" revolting.

                                  Different physiology perhaps? Humans are interesting.

                                  p.s. the one good use for a faux-meat produce is social: taking veggie burgers to a cookout for instance. Human interaction is good.

                                  1. re: pedalfaster

                                    It's kind of ironic, though, trying to make veg foods that replicate the meat one is eschewing. When I have folks over and I'm grilling, I always have a cheese tortellini salad with feta, olives and tomato and caprese salad, at least two veg sources of protein and yum. There are always grilled veggies and other sides, too. Thank dog no vegans have shown up. Yet. :-)

                                  2. re: mcf

                                    I eat meat but have many friends who do not and Field roast is actually delicious.

                                  3. re: magiesmom

                                    I hate fake meat but love kao fu. I can't stop eating it when my MIL makes it.


                                    1. re: chowser

                                      I think I'd probably like it fine. It's not trying to be Mock Duck in that dish.

                      2. re: Ttrockwood

                        I suppose we could take a few thousand people and keep them in a confined situation where their input and output are carefully controlled, but a lot of people would object to that.

                        1. re: Ttrockwood

                          Do you know how many were in his previous study that demonstrated a link? I assumer its is a similar number.

                          And whilst the number of people was small the methodology seems robust and thus points in an interesting direction especially the conclusions about the Nocebo effect and FODMAP's.

                          Much of the information about the effect of Gluten is anecdotal or from non-blind, non-controlled studies so lets be thankful for some scientific rigour at last.

                          1. re: PhilD

                            Many interesting nutrition/diet studies are even smaller. As you say, they point to interesting avenues to be further researched.

                          2. re: Ttrockwood

                            I am surprised a journal published a study with so few participants.

                            1. re: blackpointyboots

                              Well the original very widely accepted study that demonstrated a link between Gluten and GI symptoms only had 34 patients. These are complex double-blind, randomized, placebo-controlled, re-challenge trials and thus are tricky to do with hundreds of participants.

                              If you look at the research methodology and pedigree of the authors it seems pretty sound. So definitely some important research to add to the canon of work in this area.

                              1. re: blackpointyboots

                                They publish case studies with one subject, too, based upon a unique event, characteristic or discovery. Lots of studies are smaller than this; funding comes later if it finds something very new worthy of it.

                            2. Sorry, if it's no skin off your nose, what's the problem?

                              1 Reply
                              1. re: mommystar

                                Non-gluten foods often replace the gluten with some interesting ingredients that you may not care for. Non gluten foods are often not cheap.

                                The food industry responds to the gluten intolerance epidemic by offering more food may seem good. But if the cost of your weekly shop rises because they see an opportunity to slowly raise prices maybe it will effect me.

                              2. I'm sure more research needs to be done, but the one thing I can say for certain is that people who think they are sensitive to gluten should not resume eating it on the advice of a lawyer quoting a study in a business publication.

                                30 Replies
                                1. re: Isolda

                                  Yeah, I mean, if they get symptoms from it for some other reason, who cares if they steer clear?

                                  1. re: Isolda

                                    Not worse than advice from Great Aunt Sally who is telling everyone how great she feels now, gluten-free, as she's switched from sandwiches to cream soups.

                                      1. re: mcf

                                        Common hidden sources of gluten: cream soups
                                        That's why it was the example.


                                        1. re: Kris in Beijing

                                          Oh; I don't thicken with starch, missed the point by a mile!

                                      2. re: Kris in Beijing

                                        I agree, but my point is that people who think they have an allergy/sensitivity to anything should be getting their advice from a medical professional, not a news article or even us brilliant Chowpeople.

                                        1. re: Isolda

                                          Not so. Medical professionals are the last place to turn for diet advice. And dietitians and nutritionists are second to last. One has no training and the other has training courtesy of McDonalds and Pepsi.

                                          1. re: Isolda

                                            《should be getting their advice from a medical professional, not a news article or even us brilliant Chowpeople.》


                                            1. re: MrsPatmore


                                              "As I wandered the exhibition hall, I saw that McDonald's wasn't the only food company giving away freebies. Cheerful reps at the Hershey's booth passed out miniature cartons of chocolate and strawberry milk. Butter Buds offered packets of fake butter crystals. The California Beef Council guy gave me a pamphlet on how to lose weight by eating steak. Amy's Naturals had microwave brownies. The night before, Sizzler, California Pizza Kitchen, Boston Market, and other chain restaurants had hosted a free evening buffet for conference-goers: "Local Restaurant Samplings for Your Pleasure."

                                              And that wasn't all. The sessions—the real meat and potatoes of the conference—had food industry sponsors as well. The Wheat Council hosted a presentation about how gluten intolerance was just a fad, not a real medical problem. TheInternational Food Information Council <http://www.foodinsight.org/&gt;—whose... <http://www.foodinsight.org/LinkClick.... Coca-Cola, Hershey, Yum Brands, Kraft, and McDonald's—presented a discussion in which the panelists assured audience members that genetically modified foods were safe and environmentally sustainable.

                                              Doctors have no nutrition education. Virtually none. Fortunately, some of us are capable of actual reading and critical thinking and making our own informed choices.

                                            2. re: Isolda

                                              I would agree if I agreed there was really a physical medical condition to treat. It seems to be more of a psychological issue which is generating physical symptoms.

                                              Why do I care? I care because I don't like to see people get misled and conned. I worry that people get sick because they believe they should be sick. I worry that fads like gluten intolerance mislead many people to the benefit of quacks and food companies that sell high priced products that people don't need (and being a little cynical I prefer to cal the medical profession the medical industry or business).

                                              But most of all I care because the coeliacs who do have real issues with gluten can suffer in the general backlash over faddish diets. Gluten intolerance is getting to be something that is being made fun of, and that is not good news for coeliacs.

                                              1. re: PhilD

                                                This is the biggest problem is that some who think they are gluten intolerant could eat something that has gluten and be fine. If a host served it to that person, he/she could easily think it's fine and serve it to someone w/ celiac or a wheat allergy. I've had quite a few people who claim to be gluten intolerant and say they have celiac disease. When I ask, they say they didn't know it was different.

                                                1. re: chowser

                                                  This is why someone who does not tolerate gluten for any reason will vet the food. You cannot take ANY chances. You have to assume people don't understand the diet.

                                                  1. re: wekick

                                                    But, that assumes the person is taking you seriously. Someone could listen, but not pay that close attention, like my mom would. If you serve enough people who claim to be allergic to gluten and they're fine w/ what you serve, then they'll assume they know and listen w/ half an ear. It's a real problem in restaurants when people say they'll claim allergies to avoid some foods. Others gets jaded then when it's claimed.

                                                    1. re: chowser

                                                      I think you might have missed my point. They assume no one understands the diet. They assume people make mistakes, don't listen and can't read. If it ain't right they don't eat! I don't really care if someone just wants to eat GF. I know people that go back and forth and that can be a little tiresome if you ask them if they are GF presently and they say no and then when you cook that way they have flipped back to GF.

                                                      1. re: wekick

                                                        Unless you are preparing your own food, you don't have total control. I can tell a person, I can't have xxx, yyy, zzz and that person thinks sure you can, I served xxx to John and he has the same thing and he was fine. I can use Kikkoman soy sauce.

                                                2. re: PhilD

                                                  The Business Insider article is really going for attention-grabbing headlines - "Thoroughly shown that gluten intolerance doesn't exist" when the study does not say that.

                                                  If you go to this link (http://www.realclearscience.com/blog/...) referenced in the BI article, you find a more accurate summary "May not exist," along with the following commentary from one of the researchers "Much, much more research is needed."

                                                  There is, in my opinion, one huge problem with the second study that is not mentioned in either article (but is recognized in the comments in the Real Clear Science blog post, along with other good information on gluten intolerance) - the research subjects are self selecting. I have gluten intolerance. It is bad enough that, before I stopped eating gluten, I had drastic short term side effects and was getting serious longer term side effects/health complications as a result. These are clearing up because I am no longer eating gluten. No way would I join a research study where I would be fed gluten - it is not worth the risk to my health. And the odds that the study had participants with serious long term side effects and dramatic short-term side effects are pretty slim, as people will not be likely to risk their health for such a study. So you are more likely to get people with less serious issues that could well be caused by "nocebo" or FODMAPs.

                                                3. re: Isolda

                                                  Right. There is no medical test for "non-celiac gluten sensitivity" and if it is a bona fide medical condition, people who believe they may have it should be cooperating with medical researchers to define it and understand it. Instead, many of them will reject medine and turn to quacks who will tell them what they want to believe. The United States has always been fertile ground for quackery, in the name of liberty.

                                                  1. re: GH1618

                                                    There is no one test just as there is no one clinical manifestation for all who are sensitive to gluten. Of the people I know with severe problems all would be thrilled to participate in any study that would help solve these problems. They don't reject medicine but medicine has in some cases rejected them. It is hard to get money for studies that will not end up making money for some drug company. They have stayed with conventional medicine but have made the additional step of eliminating gluten with undeniable results. No quackery involved.

                                              2. re: Isolda

                                                Isolda - the study was led by Professor Peter Gibson who the Director of Gastroenterology at Monash University in Melbourne, and Director of the Gastro Intesinal unit at the Alfred Hospital (a major teaching hospital). He is also the past president of the Gastroenterological Society of Australia, and was the past Professor of Medicine and Head of the Eastern Health Clinical School in Australia.

                                                So I think its OK to give some credit to the study, but one of the real key pieces of data is that Prof Gibson was the author of a previous study which is widely credited with giving credibility to the gluten allergies/intolerance. Therefore its very interesting that his further work has indicated these initial conclusions need to be modified.

                                                This study seems to indicate that gluten intolerance is psychological not physical. The symptoms can be real but literally caused by a belief you will be ill not the gluten .

                                                1. re: PhilD

                                                  That's just reductive/implistic. Most conditions have a spectrum, from mild and unrecognized and frequently failing the diagnostic algorithm but still causing discomfort all the way up to severe health destruction.

                                                  You don't get to choose based upon a bias about where on the spectrum someone's entitled to feel bad and make that some iron clad rule.

                                                  The fact that some misunderstand it and have jumped on the bandwagon does not mean folks are making themselves sick due to worry about gluten. It's quite likely they're wheat or carb intolerant and or some other issue associated with source constituents and they've come to the wrong conclusion.

                                                  It's wrong to make sweeping generalizations about psychosomatics or hypochondria and pretend it's concern about such individuals.

                                                  1. re: mcf

                                                    Did you read the study? I thought one of the conclusions was the Nocebo effect was likely to be responsible for many of the reported symptoms. They are not making themselves sick because they worry about gluten, instead their physical symptoms are caused by the belief they will experience them if they eat gluten.

                                                    And the fact there is a very broad, diverse, disease spectrum adds weight to the theory that it is psychological. Most physical diseases tend to have common factors (which facilitates differential diagnoses) that define the disease.

                                                    Certainly its a simplified point, and doesn't recognise that there is a range of GI disorders covered by the "Gluten Intolerance" label. But, I think its fair to say 99% of the people who say the are gluten intolerant are self diagnosed, diagnosed by non-specialists, or possibly fobbed off by busy clinicians who need to deal with the worried well (and the psychosomatics or hypochondriacs) - homeopathy also falls into this "treatment" category.

                                                    Logically the epidemiology of Gluten intolerance is all wrong so should we simply accept this major dietary issue has come from practically nowhere to affect so many patients in the US/UK (but less so in the majority of other countries). Or should we step back and try and reconcile whether such a disease can be so geographically specific* or maybe question whether the disease really exists....?

                                                    * assuming diets across most western countries are broadly similar and the UK/US diets.

                                                    1. re: PhilD

                                                      I've heard the same claims made about everything from Lyme disease, fibromyalgia, chronic fatigue syndrome, and on and on.

                                                      something that shows up on an arbitrary cutoff or result on a lab report.

                                                      Your extrapolation from such a tiny sample is pretty way out on a limb.

                                                      1. re: mcf

                                                        But isn't one of the few well structured studies? Sample size is important but so is experimental design and sometimes the design naturally limits the sample size. To me it looks like pretty robust science, but as its science its going to need to be tested by further studies etc.

                                                        Now Chronic Fatigue Syndrome is an interesting one, dare I say it was the disease of the 90's. it now seems to have faded from the general consciousness. Will Gluten follow it?

                                                        1. re: PhilD

                                                          Oh, brother. Likely, CFS is not just one entity, but plenty of folks are disabled by those symptoms. Just because the media have moved on as no exciting new discoveries have been made doesn't mean fewer folks are ill.

                                                          1. re: mcf

                                                            OK the media has moved on but seemingly so have the general public. I remember in the late '80's and early '90's hearing of colleagues and acquaintances succumbing to "yuppie flu" as it was called, these days I never seem to hear about it from anyone I know or work with . However, I do hear a lot about gluten intolerance.

                                                            The epidemiology of both seem quite similar. A few people with very genuine illnesses suddenly balloon (no pun intended) into a mass epidemic with a sketchy scientific base. I agree it doesn't mean fewer are genuinely ill, but it does mean those that were not really ill have moved on to the next fad.

                                                            Anecdotal I know but it would be interesting to read some good stats about the epidemiology of both to see if there are parralels between the two.

                                                            1. re: PhilD

                                                              There's a whole lot of stuff going on in the world that may escape your attention if it's not under your nose. That's how life is sometimes.

                                                    1. re: law_doc89

                                                      Biesiekierski recognizes that gluten may very well be the stomach irritant we've been looking for. "There is definitely something going on," she told RCS, "but true NCGS may only affect a very small number of people and may affect more extraintestinal symptoms than first thought. This will only be confirmed with an understanding of its mechanism."

                                                      Currently, Biesiekierski is focused on maintaining an open mind and refining her experimental methods to determine whether or not non-celiac gluten sensitivity truly exists.

                                                      "We need to make sure that this research is as well controlled as possible and is reproducible," Biesiekierski told RCS, subsequently adding the quintessential adage of proper science.

                                                      "Much, much more research is needed."

                                                      So if the author you've cited disagrees with your topic header assertion, who are we to disagree?

                                                      1. re: law_doc89

                                                        That is why you can't just post an erroneous headline and article without digging a little deeper. You DO need to look at what is said and the basis, not just go by someone else's take.

                                                    2. Incorrect conclusion.

                                                      The correct conclusion would be that some or many people think they are gluten intolerant when they're not. Though it should be noted that a single study of 37 individuals doesn't effectively prove anything, much less the total absence of some phenomenon.

                                                      I don't actually have a dog in this fight - I'm not gluten intolerant and I don't have any real opinion on the recent trend of widespread self-diagnosed gluten intolerance, aside from the general rule of thumb that anything that is widely self-diagnosed is almost always also widely self-misdiagnosed. But holding up a single relatively small study as conclusive evidence of anything is just bad scientific reasoning.

                                                      1. Not true.

                                                        As someone who is gluten intolerant, I wonder why people who have no stake get so emotionally tied up in this.

                                                        Yes, some people who are avoiding gluten and don't seem to have a medical need to do so can be annoying; they annoy me, too. However, I can tell you that I suffered from most of the symptoms from gluten intolerance before cutting it out of my diet (although, in part because I do not have celiac, I can eat trace amounts in things such as soy sauce). Since changing my diet (about 1 1/2 years ago), most of what the adverse affects I was experiencing are gone. And no, eating other starches does not cause the same issues.

                                                        Now, since diagnosing the exact cause can be tricky, I will buy that I might be actually intolerant of something in wheat other than gluten. But I won't buy that it is fine for me to eat something that clearly makes me sick. And I don't get why others get worked up about it.

                                                        4 Replies
                                                        1. re: Lori D

                                                          It isn't an emotional issue, it's an intellectual issue.

                                                          1. re: GH1618

                                                            Not that I've noticed. More like a knee jerk kind of sneer reflex.

                                                              1. re: GH1618

                                                                If we are talking about intellectual issues, the Business Insider article misstated the conclusion. This was pretty easy to discover - one click on a link that the article itself provided.

                                                                Now, as for the emotional issues, I repeat, there are certainly people that are avoiding gluten that are annoying about it. However, there are people who have a medical need to do so, even though diagnosis is tricky at this point in time. I don't go around telling everyone who can tolerate wheat/gluten that they must stop eating it; why do people feel compelled to tell me the converse, that I don't have a problem, when I do?

                                                                Interestingly enough, the actual medical professionals who I see have not seen the need to tell me I MUST eat gluten.

                                                            1. If you have any sort of gluten intolerance you KNOW it.

                                                              It's not trendy. It's not cute.

                                                              You own Depends undergarments.

                                                              Those rubber/plastic sheet liners.

                                                              Car/plane trips are "iffy".

                                                              1 Reply
                                                              1. re: pedalfaster

                                                                Once someone has eliminated GI bleeds and RA by eliminating gluten, and gotten off all meds, no "study" will convince them otherwise. I find it odd that people feel the need to tell people what is going on in their own body. Two people in the family with life threatening intolerance tried a GF diet as a last resort and results were dramatic. They came to it sure it would not work. Neither will touch any food that might have a chance of having gluten now. They did start out wheat free but have determined GF is what is needed. Each has a daughter with severe skin allergies with changes in texture. The 3 year old also with G I issues had marked improvement on a GF diet. The other daughter in her 20s won't try a GF diet, but takes all kinds of meds. It is not an easy diet especially when people think it is in your head and some will even mislead as to what is in the food. I do not have this issue but a few near and dear do.

                                                              2. The Business Insider Article is poorly written and only somewhat based on this article from Real Clear Science which is titled
                                                                "Non Celiac gluten sensitivity MAY not exist".


                                                                The BI article reached totally different conclusions than the RCS article.

                                                                BI-"You can go ahead and smell your bread and eat it too. Science. It works."

                                                                "Biesiekierski recognizes that gluten may very well be the stomach irritant we've been looking for. "There is definitely something going on," she told RCS, "but true NCGS may only affect a very small number of people and may affect more extraintestinal symptoms than first thought. This will only be confirmed with an understanding of its mechanism."

                                                                Currently, Biesiekierski is focused on maintaining an open mind and refining her experimental methods to determine whether or not non-celiac gluten sensitivity truly exists.

                                                                "We need to make sure that this research is as well controlled as possible and is reproducible," Biesiekierski told RCS, subsequently adding the quintessential adage of proper science.

                                                                "Much, much more research is needed."

                                                                There are also links to the abstracts to the studies.

                                                                Law doc. says save your money. I say do your homework.

                                                                Actually my nephew saves a tremendous amount of money not having IV infusions every six weeks and all the other meds he was taking plus visits to multiple specialists. His gastroenterologist told him it won't work and you will be back. That was two years ago. His health is restored instead of the rapid downward spiral he was experiencing. GF diet is cheap compared to the use of pharmaceuticals.

                                                                2 Replies
                                                                1. re: wekick

                                                                  "That is why you can't just post an erroneous headline and article without digging a little deeper."

                                                                  Totally agree but I would also say that taking selective quotes from article can lead to mis-interpretation. From reading the articles and listening to Prof Gibson talk about the study three things struck me:

                                                                  1. Many participants reported symptoms even when they did not have gluten in their diet. This Nocembo effect is interesting as it demonstrates that much self reported NCGS is likely to be false i.e. its psychological not physiological. So there are a lot of people out their that imagine they have NCGS when they don't. The feelings of bloating, nausea, gas and fatigue are real but they are driven by the mind not the gluten.

                                                                  2. FODMAPS are not well controlled for in many studies. FODMAPS are carbohydrates that are indigestible and ferment in the gut causing gas, bloating etc. (these include, beans, sprouts, cabbage, onions etc). If you control for FODMAPS then symptoms reduce. Prof Gibson suggests that clinicians should eliminate FODMAPS from diets before Gluten and if that is done many many people will be found to be sensitive to these. And the good news is its easier and cheaper for patients to eliminate these than gluten. I also find it intetrsting that FODMAPS are in the foods every schoolboy knows gives you gas! Note: bread can be a source of FODMAPS so if you eliminate bread its the reduction in FODMAPS that makes you feel better not gluten.

                                                                  3. A few people are probably sensitive to gluten (maybe your nephew) and the mechanism is not fully understood. Its thought that some previous studies failed to exclude some people with Coeliac Disease therefore skewing results. But given the first two points the actual number of people with NCGS is likely to be far far lower than the number who think they are.

                                                                  So a very interesting study that seems to confirm the significant recent rise of Gluten Intolerance in a few countries is probably a fad rather than an epidemic. Also confirmation that we all can't eat all foods so if cabbage causes gas and you don't want gas don't eat cabbage. So rather than blaming gluten and being "on trend" maybe its better to reflect on the whole diet.

                                                                  1. re: PhilD

                                                                    I did not take a selective quote from the article. I took the entire section that relates to what Biesierkierski said about the study and linked to the article for those who wanted to read it and that article had links to the papers. It is all there. I find it odd that you are critical of what I posted yet seem to give the OP a pass on a very gross misrepresentation of the study.

                                                                    "3. A few people are probably sensitive to gluten .....and the mechanism is not fully understood."

                                                                    This quote from you is the whole point. The mechanism is not understood, as opposed to

                                                                    "Non Celiac gluten sensitivity does NOT exist". Case closed.

                                                                    When we better understand the mechanisms of all the various reactions people can have, then we will be able to better know who is affected, how many are affected and what short and long term affects might be. I don't doubt the findings in the study but it was a small, short term study. I applaud Biersierski for continued effort and wanting to get to the truth with continued study.

                                                                2. This study looks at one very narrow group of possible wheat/gluten issues. People who have self diagnosed with GI issues they are saying flare when they eat wheat. There were 37 people in the study, a very small amount. What I can not find is who funded this study and that can be a critical component to determining the validity of it. Since the actual study is paywalled it makes actually weighing the information in the study impossible. The original link is from Business Insider, not exactly a reliable source of information and it references "real clear science" part of real clear politics etc. Hardly the go to place for reliable unbiased scientific information. Yet people are waving this study around as some sort of "final proof" that anyone with wheat or gluten issues must be faking it.

                                                                  There are a number of medical problems tied to problems with wheat consumption. Hashimotos thyroiditis, celiac, a number of types of arthritis and Durhings disease all have known components where wheat consumption has been identified as playing a role in making certain symptoms worse. Durhings is considered a skin version of celiac. Durhings can also plague people for years after they stop eating wheat.

                                                                  2 Replies
                                                                  1. re: blackpointyboots

                                                                    If you click on the RCS article the link for the sources at the bottom will take you to the abstract and then full text, no paywall. It also tells who paid for the study and any conflict of interest.

                                                                    1. re: wekick

                                                                      Tried that, It gets to a paywalled link to Elsevier via Pubmed. Don't get me started on my annoyance of paywalled studies with extremely limited ability of anyone even with academic access to read them....

                                                                  2. Here is an interesting essay on why people's false beliefs are re-enforced by contrary facts:


                                                                    The Dilution Delusion

                                                                    24 Replies
                                                                    1. re: law_doc89

                                                                      You mean like when someone believes a study concludes something it doesn't?

                                                                      1. re: law_doc89

                                                                        The funny thing here is that I doubt you see yourself as the person with false beliefs. You seem to think that not one person can have a medical problem that is outside of your personal belief system.

                                                                        1. re: wekick

                                                                          Science isn't a personal belief system. Its evidence based, with a hypothesis experimentally tested and proved or disproved.

                                                                          We don't need to understand how a medical condition works for it to be real, there are many conditions that a far from understood. However, that is very different from ascertaining whether a condition exists.

                                                                          There is a lot of doubt about the prevalence of NCGS in so many people. Many self diagnose, and many use "unqualified" complimentary medics specialists for diagnosis. Studies like this show how these anecdotal symptoms are not always real or may not be caused by what the patient believes is the cause.

                                                                          Is gluten the culprit or is it an innocent bystander...? Only scientific testing will tell us, believing it is without objective evidence simply doesn't make sense....what is the point of excluding gluten when you might be sensitive to fructose?

                                                                          1. re: PhilD

                                                                            "Science isn't a personal belief system."

                                                                            Right. It isn't a matter of whether or not there are disorders which lie outside the knowledge base of medical science. Of course there are. Medical science is not complete, and there is still a great deal of uncertainty in medicine and much more to learn. The problem that those of us who believe in science-based medicine have is with those who promote ideas based in superstition or outright quackery rather than on scientific method.

                                                                            1. re: GH1618

                                                                              Yes evidence based medicine is the way to go but that body of evidence is constantly changing. No one is advocating superstition or quackery.

                                                                              1. re: wekick

                                                                                Food fadism is small part of the problem, as it is mostly benign, but a piece nevertheless. The problem being anti-scientific thinking.

                                                                                1. re: GH1618

                                                                                  With food fascism, you would have to be specific. It depends on the particular fad if there is a problem or not. In the case of avoiding gluten, the potential upside is tremendous and the down side? I'm not seeing anything significant. You don't have to have gluten in your diet.
                                                                                  I don't see the scientific method as reserved for the "hallowed halls" either. What better use of the scientific method than for the individual to solve their own problem.
                                                                                  "I have GI problems. Maybe it is something I am eating. I have read wheat can cause issues. "
                                                                                  "I will try eliminating it from my diet.
                                                                                  It is noted over a week that symptoms don't improve."
                                                                                  They can choose to continue and see if they improve over long term or try eliminating something else. They might add to their research before they make that decision.
                                                                                  They then repeat the process.

                                                                                  Most people don't call it the scientific method but often this is what they are doing.

                                                                                  Yes there are some that follow fads because they visited the gypsy and she told them to eat only newts and peas harvested under a full moon. That is not what we are talking about here. The few who go off should not be a reason to keep the thinking person trying to understand and have a role in maintaining their own health.
                                                                                  At best studies will only give percentages. It is then up to you and those that you might enlist to help you to determine what specifically is the answer to your problems

                                                                                  1. re: wekick

                                                                                    I think your scientific method needs a little tweak.

                                                                                    Observation - good

                                                                                    Experimentation - you need to double blind it and randomise it. So get your partner to prepare two two identical sets of meals, one with, and one without the offending ingredient (and it needs to be a singular element to avoid confounding factors). Then have someone else who doesn't know which is which decide which set to give you for that week. Record your results as you go.

                                                                                    Conclusion - draw your conclusion about whether it worked or not - write it down. Then reveal which option you were served.

                                                                                    The difference between the two methods is important as it's the double blind randomised nature of the trial that makes it scientific. Your approach will introduce experimental bias as you could react based on the Placebo effect or you may have observational bias as you may exaggerate/diminish observations too prove your point.

                                                                                    One of the real challenges is to eliminate the confounding factors...and that in itself is tricky at home.

                                                                                    1. re: PhilD

                                                                                      It isn't my method it is what people do. It is real life. Several people I know that have done this and their symptoms are resolved. They are happy. They don't care if they exactly followed the scientific method. You seem to feel that people can only be helped by a very narrow range of health care providers and 99% are on the wrong path. I think there is much to be learned but each person can help themselves by mindfully considering what they eat and pay attention to how it affects their body. We just see things very differently.

                                                                                      1. re: wekick

                                                                                        Mmmmh - they help themselves solve a problem that may not exist or could be a severe underlying disease.

                                                                                        I really don't get why its good that lots of people worry about having a disease that they don't have. Certainly they can self diagnose, and self treat but it seems odd that is the right thing to do.

                                                                                      1. re: GH1618

                                                                                        Darn auto correct. Fascism might not be a bad term though.

                                                                              2. re: PhilD

                                                                                "Science isn't a personal belief system. Its evidence based, with a hypothesis experimentally tested and proved or disproved. "

                                                                                Yes this is exactly the point, in this case the personal belief system isn't science. When you speak in absolutes and use a singular article written by someone who can't even summarize someone else's one page article, as your evidence, it crosses over into the area of personal belief, IMO, but if that is science for you, you are free to believe what you like.

                                                                                "We don't need to understand how a medical condition works for it to be real, there are many conditions that a far from understood. However, that is very different from ascertaining whether a condition exists. "

                                                                                How so?

                                                                                "There is a lot of doubt about the prevalence of NCGS in so many people"

                                                                                Yes we have no idea of the prevalence at this point.

                                                                                Your quote above- " I think its fair to say 99% of the people who say they are gluten intolerant are self diagnosed, diagnosed by non-specialists, or possibly fobbed off by busy clinicians who need to deal with the worried well (and the psychosomatics or hypochondriacs)".
                                                                                Where is the evidence for this statement? Non specialists can't make a diagnosis? You make it sound like people go to their health care providers with nothing but nonsense. I have found most people have a pretty good idea when they have a medical problem.

                                                                                "Is gluten the culprit or is it an innocent bystander...? Only scientific testing will tell us,"

                                                                                Not for the individual.

                                                                                "believing it is without objective evidence simply doesn't make sense....what is the point of excluding gluten when you might be sensitive to fructose?"-

                                                                                Yes, it makes perfect sense. For one thing, these conclusive tests you speak of are many years away. If you are a person who is miserable, in last ditch efforts to avoid having your colon removed, and your body is literally failing, would you not try a dietary modification on the very outside chance it would at least help a little? Are you telling me you would stand there and say "Well it isn't really tested yet so maybe I'll just go ahead and get my colon removed"? This is an extreme case but even for a person with less severe GI or dermatological symptoms, how can it hurt? The benefit of getting better would outweigh the risk of being wrong at least IMO. Secondly, for the individual person, the objective evidence is in their own body not in a study. Many allergies require that people avoid various foods to determine what food or combination of foods produce allergy. This really is a very similar concept. The point of excluding gluten when you might be sensitive to fructose is that you have to start somewhere. Wheat and dairy are the two most common culprits for people that have more severe symptoms. All of the people I know started with avoiding wheat and then expanded to include all items with gluten. One also excluded dairy first but it did not help. The others have had their symptoms completely go away. Non of these were the mild gas and bloat symptoms. They all had severe skin rashes or severe GI symptoms or a combination. One also was diagnosed by a specialist with RA. Most have physicians that are thrilled with their improvement even though they did not suggest the dietary changes. Only the GI specialist did not believe it. That was 2 years ago.

                                                                                "Many self diagnose, and many use "unqualified" complimentary medics specialists for diagnosis."

                                                                                Yes but people have the right to choose how they take care of their health and what they believe. Who determines who is unqualified or even incompetent? Some people will blindly follow whatever health care professional whether it be a "specialist" or a "quack". Sometimes it is darn hard to figure out which is which. Sometimes a good doctor is just wrong. For many people they choose to go to the doctor that is "nice". Others choose to inform themselves and listen to what their body tells them. They partner with their health care provider.

                                                                                1. re: wekick

                                                                                  I actually went back to the research papers - I read the article as a piece of journalism.

                                                                                  There are medical conditions that are not fully understood but the symptoms are assessable, and can be scientifically measured. There are other conditions (like NCGS) with symptoms that are difficult to reproduce without excluding other factors i.e. Coeliac disease, confounding factors or cofounders. So you don't need a mechanism to know its real, but you do need attributable symptoms to do so.

                                                                                  Ref the stats for self diagnoses etc. There is research on this (if I have time I will try and find it) and the numbers for NCGS being diagnosed by non-specialist units is very high. Given its a tricky diagnostic area that in it self is odd. And yes lots of people do present to their GP for all sorts of reasons than underlying disease - the worried well is again a well documented phenomena.

                                                                                  Is gluten the innocent bystander - surely the problem is the individual doesn't really know. They maybe wasting lots of money and effort excluding something from their diet for the wrong reasons.

                                                                                  Ref: objective evidence. Are you confusing Coeliacs Disease and NCGS? Coeliacs are at risk of surgical issues not NCGS. There are no test for NCGS (as it may not exist) but there are tests for Coeliac Disease.

                                                                                  After excluding Coeliac disease food challenge tests including gluten would be sensible. Excluding the main gluten products also excludes its of other things so not really a great starting point for a robust diagnosis. Its also not a blind test so very susceptible to bias and other effects.

                                                                                  No debate a persons right to select their health care strategies. But equally I think its only fair that if people make odd choices (and some are dangerous) then its sensible to debate them. NCGS isn't going to kill anyone but it may make people miserable that don't need to be.

                                                                                  1. re: PhilD

                                                                                    I think one of the problems is there doesn't seem to be a set criteria for NCGS.

                                                                                    "Is gluten the innocent bystander - surely the problem is the individual doesn't really know. They maybe wasting lots of money and effort excluding something from their diet for the wrong reasons."

                                                                                    Some people with severe symptoms look at excluding a particular type of food as cheap and easy and when it works, heaven.

                                                                                    "NCGS isn't going to kill anyone but it may make people miserable that don't need to be."

                                                                                    I don't understand this statement in light of all your writings saying it probably doesn't exist. ????


                                                                                    1. re: wekick

                                                                                      NCGS has a specific usage in the medical community:
                                                                                      "Non-celiac gluten sensitivity has been coined to describe those individuals who cannot tolerate gluten and experience symptoms similar to those with celiac disease but yet who lack the same antibodies and intestinal damage as seen in celiac disease"

                                                                                      I think a lot of posters are confusing it with some sort of wheat allergy (note the mention of hives and such).

                                                                                      In the Australian study, the researchers had to rely on self reported symptoms, things like a feeling bloated. They couldn't examine the subjects, and say, 'yes you are experiencing a reaction to this diet change'.

                                                                                      1. re: paulj

                                                                                        Yes but the researcher in the original article is talking about skin disorders and other symptoms. It just seems like it covers a wide range/severity of symptoms.

                                                                                        1. re: wekick

                                                                                          I'm referring to the article summarized this month in Real Clear Science. It specifically focuses on GI symptoms. I can repost links if needed.

                                                                                          1. re: paulj

                                                                                            I already posted links to the RCS article. This s a quote from the article.

                                                                                            "There is definitely something going on," she told RCS, "but true NCGS may only affect a very small number of people and may affect more extraintestinal symptoms than first thought. This will only be confirmed with an understanding of its mechanism."

                                                                                            I thought I read somewhere she specifically talks about rashes but I can't find it now. Other articles refer to many other extraintestinal symptoms though.

                                                                                            1. re: wekick

                                                                                              Almost sounds like a true Scotsman defense. Since we just ruled out vague GI symptoms, NCGS must be another set of symptoms. We have to acknowledge that some people feel better after they eliminate 'gluten' from their diet and give that syndrome a name.

                                                                                              MD blogger discussion of this issue
                                                                                              "What is controversial is a disorder known as non-celiac gluten sensitivity (NCGS) – believed to be an intolerance to gluten that causes gastrointestinal symptoms. NCGS is controversial, and in fact may not truly exist at all.

                                                                                              NCGS should be considered a hypothesis, not a confirmed entity, but this has not stopped self-diagnosis and treatment from becoming popular."

                                                                                              1. re: paulj

                                                                                                I wondered if the rashes etc were symptoms associated with the NOCEBO effect.....? Although it could also be part of the issue of having several cofounders in most exclusion diets so the rashes etc could be caused by sensitivity to something completely extraneous.

                                                                                      2. re: wekick

                                                                                        But what about all the people who imagine their symptoms and believe they are ill because they get stirred up by the media and self delusional beliefs. They cure themselves but then have lapses and cause themselves lots of "imagined" pain.

                                                                                        The issue with these types of syndromes is that lots of perfectly healthy people start to think they are ill when they are not. That's the reason I push back on the belief that these types of things do no harm, they actually can cause distress and that's not good.

                                                                                        I should have said "the belief in NCGS isn't going to kill anyone....".

                                                                                      3. re: PhilD

                                                                                        If, after excluding something from my diet, I have demonstrable improvement in my health, I am not wasting money and effort.

                                                                                        Ultimately, we need to make our choices based upon both science and the results we get from our actions. And, as science is evolving, especially in this area, since this diet is working for me (and since I see a couple of red flags with this study), I am not going to pay much attention to it. If you feel this is an odd choice, so be it.

                                                                                        1. re: Lori D

                                                                                          It sounds like you are doing this after reviewing and understanding the issues rather reading a short article in a magazine and becoming evangelical. An important difference - I am glad it works for you, maybe as our understanding develops you can refine your diet.

                                                                                          You may be interested in some of the other research by the same team, one paper has an interesting strategy for clinicians to help define what may be causing GI symptoms rather than the gluten.

                                                                              3. http://www.pronutritionist.net/interv...
                                                                                Interview with the lead author, Biesiekierski, after the 1st study was published, but before this latest.

                                                                                Related pubmed citations

                                                                                1. Why pay attention to careful science and studies published in real journals? I prefer to discredit it without actually reading it.

                                                                                  I KNOW what my body tells me.

                                                                                  And OPRAH and DR OZ believe it.

                                                                                  And Oz at one time was a doctor.

                                                                                  11 Replies
                                                                                  1. re: sal_acid

                                                                                    Science is about being able to follow the evidence regardless of preference. It is blind. Often the results of research lead to uncomfortable conclusions. It is based actually, in part, on falsification of beliefs. It also is about moving beyond coincidence, which, statistically, abounds.

                                                                                    The Oprahs and Oz's exploit coincidence and exotic beliefs for fun and profit. Lot's of people are desperate to feel special, and having a disease that is somehow misunderstood can make a person feel special with superior insight, no matter how wrong.

                                                                                    1. re: law_doc89

                                                                                      Your sarcasm meter might need some adjustment, I think.

                                                                                        1. re: law_doc89

                                                                                          Having non-celiac wheat/gluten sensitivity doesn't make anyone feel 'special', I can tell you that for sure.

                                                                                          Unless your idea of 'special' is waking up in the middle of the night with nausea so severe, when you try to run to the bathroom, you get two steps before getting so dizzy you fall to the floor, and you can barely even lift your head off the floor as you get sick from both ends... and you've ended up in the emergency room a couple times and admitted once....

                                                                                          The existence of media hysteria and "trendiness" and the rush to exploit/profit from same does not disprove the legitimacy of the real thing, which is not the least bit glamorous or "hip"

                                                                                          1. re: law_doc89

                                                                                            law_doc89 -
                                                                                            "Science is about being able to follow the evidence regardless of preference. "

                                                                                            Yes and the key is having evidence. Science is not about basing your absolute statement on one very unscientific Business Insider article.

                                                                                            "It is blind. "

                                                                                            You would hope so but it is not always the case. You often have to look at who the person presenting, works for, and who pays for the study.

                                                                                            1. re: wekick

                                                                                              I have referenced both. I posted the BI version first, assuming that there is a general scientific illiteracy. I could post some truly technical articles too, but will pass for now.

                                                                                              Sadly, all too much published literature is very poor. (I am published myself on the topic of statistical confounding variables) But to say that who pays for the study determines the results is not true. Sometimes it is, but mostly, the problem is poorly constructed studies, poorly implemented, and statistical illiteracy.

                                                                                              I will continue, here, to post to things written for general consumption, as I think this is not the place to discuss the relative advantages of anterior versus posterior probabilities, reverse cornfield analysis, and the like.

                                                                                                1. re: law_doc89

                                                                                                  The cheese one is true.

                                                                                                  Cheese causes nightmares so you thrash around in bed thus increasing the risk of strangulation from your bed sheets. Its perfectly obvious.

                                                                                                2. re: law_doc89

                                                                                                  You only referenced the BI article in your initial post and posted a link to the abstract of one of the papers two days later.

                                                                                                  " I posted the BI version first, assuming that there is a general scientific illiteracy."

                                                                                                  I get it. Use an article written by someone with poor reading comprehension to play to the CH audience. Now I see what you did.

                                                                                                  "But to say that who pays for the study determines the results is not true."

                                                                                                  Reread what I posted. I did not say it was always the case.

                                                                                          2. I'll rely on my doctor's diagnosis instead. Thanks

                                                                                            1. Here's a quote from an article your article links to, from a better source than some random, self-admitted quite small but self-proclaimed "still sound" clinical trial.

                                                                                              Dr. Alessio Fasano echoed the point that celiac disease and other possible causes of symptoms must be ruled out before a person is diagnosed with non-celiac gluten sensitivity.

                                                                                              He directs the Center for Celiac Research at Massachusetts General Hospital for Children in Boston and was not involved in the study.

                                                                                              “The question is what really triggers this - and because we don’t have a clear definition with diagnosis of the disease, there’s been tremendous confusion,” Fasano told Reuters Health.

                                                                                              He said the symptoms of non-celiac gluten sensitivity aren’t limited to digestive issues.

                                                                                              “We’re talking about skin rash, headaches, foggy minds, joint (pain), anemia and diarrhea - not just irritable bowel syndrome,” he said.

                                                                                              Mass General Hospital operates under the mindset that non-celiac gluten sensitivity does exist, and they diagnose patients with it.

                                                                                              1 Reply
                                                                                              1. re: cringle22

                                                                                                Cringle - you do realise that Prof Gibson's unit is part of a major teaching hospital and the unit's research is internationally respected?

                                                                                                The subjects for the study were extensively screened and controlled to ensure they did not have coeliac disease.

                                                                                                The article you refer to actually has Fasano and Biesiekierski (a co-author with Gibson) agreeing that Coeliac disease is poorly diagnosed. One of the issues is that many self diagnose NCGS and exclude gluten making a diagnosis of Coeliac disease difficult.

                                                                                                And this can all lead to the hypothesis that people with NCGS are either experiencing a NOCEBO effect, reacting to FODMAPS, or are really coeliacs. Thus gluten is really only the culprit in the last category.