May 15 2014

Non-Celiac Gluten Sensitivity

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35 Responses to “Non-Celiac Gluten Sensitivity”

  1. carbonUniton 15 May 2014 at 9:13 am

    Gluten is natural – how can it possibly cause problems?

  2. Bill Openthalton 15 May 2014 at 9:35 am

    By not being part of the paleo diet — that’s how.

  3. ccbowerson 15 May 2014 at 10:32 am

    “It is a springy protein that gives bread its elasticity”

    Actually it is more about the dough’s elasticity and it provides structure when baked into bread. This PDF discusses the role of gluten and other factors in elasticity and other factors of bread making:

    http://www.muehlenchemie.de/downloads-future-of-flour/FoF_Kap_14.pdf

    People have been making bread for thousands of years, yet it is pretty difficult to find reliable information on the subject. I’ve found this true of many skills accumulated over history (artisan skills)… people may have mastered the “hows” but not so much on the “whys.” The “whys” (explanations) are often only partially correct, or sometimes completely wrong, and these incorrect explanations get passed on along with the actual skills of the artisan.

    This can result in myths that persist, until they are tested (e.g. myths like- searing meat seals in the juices, you should add salt to pasta water to increase the boiling point, alcohol cooks off quickly, etc) Food science can test the hows to come up with better explanations, which can help improve how things are done by getting rid of irrelevant steps and emphasizing the important ones.

  4. Bill Openthalton 15 May 2014 at 10:49 am

    ccbowers –

    Food science can test the hows to come up with better explanations, which can help improve how things are done by getting rid of irrelevant steps and emphasizing the important ones.

    But when you do that it no longer tastes yummy. Don’t you realise the taste comes from tradition? ;-)

  5. ccbowerson 15 May 2014 at 10:50 am

    “More recently we have chronic Lyme, candida hypersensitivity, multiple chemical sensitivity, electromagnetic sensitivity, and a host of other vague syndromes.”

    Perhaps they all have untreated chronic morgellons? Sorry, I shouldn’t make fun, because some of those people may have untreated conditions, which may continue to go untreated due to falsely attributing their symptoms to a false diagnosis. This brings me to…

    “Popular diagnoses (whether real or not) do tend to attract self-diagnosis, and become an impediment to a more proper diagnosis.”

    This is an important point to address the “What’s the harm?” question. I know the Jimmy Kimmel clip is for comedy, but it is certainly true that health fads come and go and are not a result of carefully consulting the best evidence. People sometimes make decisions about how to live their lives (and their family’s lives) based upon very little information, and it should be pointed out when these fads are not in line with our current understanding. Attributing specific dietary changes to GI symptoms is nearly impossible for all but the most direct causes of severe symptoms, like Celiac. Even the most skeptical of people will have trouble due to the inherent variability in GI symptoms and the enormous number of variables. It is a situation setup for confirmation bias.

  6. ccbowerson 15 May 2014 at 10:57 am

    “Don’t you realise the taste comes from tradition?”

    That and love. Science removes the love. ;o)

    There seems to be a persisting belief among some cooks that something is lost when you are too precise (e.g. avoiding the use a thermometer or measuring cups or scale). Of course the only thing that is lost is consistency.

  7. Teaseron 15 May 2014 at 12:12 pm

    The conclusion of the first study referenced below contradicts the conclusion reached by Steven:

    Steven: “The best evidence we currently have suggests that NCGS is probably not a real entity. Blinded challenges do not show any correlation, and there is currently no evidence for a specific mechanism. ”

    Study: “Conclusion:Our data confirm the existence of non-celiac WS as a distinct clinical condition. We also suggest the existence of two distinct populations of subjects with WS: one with characteristics more similar to CD and the other with characteristics pointing to food allergy.”

    Study information and link.
    “Methods: We reviewed the clinical charts of all subjects with an irritable bowel syndrome (IBS)-like presentation who had been diagnosed with WS using a double-blind placebo-controlled (DBPC) challenge in the years 2001-2011. One hundred celiac disease (CD) patients and fifty IBS patients served as controls.”

    http://www.ncbi.nlm.nih.gov/pubmed/22825366

    More studies:

    High prevalence of undiagnosed coeliae disease in 5280 Italian students screened by antigliadin antibodies

    C Catassi1,*, IM Rätsch1, E Fabiani1, S Ricci1, F Bordicchia2, R Pierdomenico3 andPL Giorgi1
    Article first published online: 21 JAN 2008

    DOI: 10.1111/j.1651-2227.1995.tb13725.x

    “The prevalence of undiagnosed coeliae disease was 4.36 per 1000 screened subjects (95% CI 2.58-6.14) and 5.03 per 1000 (95% CI 3.41-6.65) in the general population. The ratio of known to undiagnosed cases was 1 to 6.4. This high prevalence of undiagnosed coeliae disease raises a number of problems that require further evaluation.”
    ———————————-
    This study seems to implicate FODMAPs in the last sentence of the summary.

    Nutrients. 2013 Sep 26;5(10):3839-53. doi: 10.3390/nu5103839.
    Non-Celiac Gluten sensitivity: the new frontier of gluten related disorders.
    Catassi C1, Bai JC, Bonaz B, Bouma G, Calabrò A, Carroccio A, Castillejo G, Ciacci C, Cristofori F, Dolinsek J, Francavilla R, Elli L, Green P, Holtmeier W, Koehler P, Koletzko S, Meinhold C, Sanders D, Schumann M, Schuppan D, Ullrich R, Vécsei A, Volta U, Zevallos V, Sapone A, Fasano A.
    Author information
    Abstract
    Non Celiac Gluten sensitivity (NCGS) was originally described in the 1980s and recently a “re-discovered” disorder characterized by intestinal and extra-intestinal symptoms related to the ingestion of gluten-containing food, in subjects that are not affected with either celiac disease (CD) or wheat allergy (WA). Although NCGS frequency is still unclear, epidemiological data have been generated that can help establishing the magnitude of the problem. Clinical studies further defined the identity of NCGS and its implications in human disease. An overlap between the irritable bowel syndrome (IBS) and NCGS has been detected, requiring even more stringent diagnostic criteria. Several studies suggested a relationship between NCGS and neuropsychiatric disorders, particularly autism and schizophrenia. The first case reports of NCGS in children have been described. Lack of biomarkers is still a major limitation of clinical studies, making it difficult to differentiate NCGS from other gluten related disorders. Recent studies raised the possibility that, beside gluten, wheat amylase-trypsin inhibitors and low-fermentable, poorly-absorbed, short-chain carbohydrates can contribute to symptoms (at least those related to IBS) experienced by NCGS patients. In this paper we report the major advances and current trends on NCGS.
    —————————-
    And finally a comment about how difficult is to accurately test for gluten sensitivity in the lab:

    50 Shades of Gluten (Intolerance) by CHRIS KRESSER

    “Here’s the crucial thing to understand: Celiac disease is characterized by an immune response to a specific epitope of gliadin (alpha-gliadin) and a specific type of transglutaminase (tTG-2). But we now know that people can (and do) react to several other components of wheat and gluten — including other epitopes of gliadin (beta, gamma, omega), glutenin, WGA and deamidated gliadin – as well as other types of transglutaminase, including type 3 (primarily found in the skin) and type 6 (primarily found in the brain). (3, 4, 5, 6, 7, 8)

    This is a huge problem because conventional lab testing for CD and of gluten intolerance only screens for antibodies to alpha-gliadin and transglutaminase-2. If you’re reacting to any other fractions of the wheat protein (e.g., beta-gliadin, gamma-gliadin or omega-gliadin), or any other types of transglutaminase (e.g., type 3 or type 6), you’ll test negative for CD and gluten intolerance no matter how severely you’re reacting to wheat.”

  8. sanchomon 15 May 2014 at 12:55 pm

    @Teaser The study you link refers to wheat sensitivity, not gluten sensitivity. Is that distinction relevant?

    I also have a question about its conclusion: “Our data confirm the existence of non-celiac WS as a distinct clinical condition. We also suggest the existence of two distinct populations of subjects with WS: one with characteristics more similar to CD and the other with characteristics pointing to food allergy.”.

    What does it meant for a diagnosis to be a “distinct clinical condition”. It is possible for a diagnosis to be a distinct clinical condition but also have two distinct populations of subjects, each in different ways?

  9. Steven Novellaon 15 May 2014 at 1:18 pm

    Teaser – I know there are researchers who believe in NCGS, I just don’t think they have made their case. Other reviewers, I think, do a better job of critically analyzing the current science. For example:http://www.sciencedirect.com/science/article/pii/S1052515712000980

    Conclude:
    “Better understanding of NCGS is hampered by the lack of objective clinical diagnostic criteria and the absence of specific biomarkers.”

    Your other references are in line with my conclusions. Basically –

    Some patients have undiagnosed Celiac. This diagnosis may be expanded with more thorough diagnostic methods, but that still is consistent with the position that they have undiagnosed Celiac.

    Some have other food sensitivities, with FODMAPs being one possibility.

    Others have a huge overlap with IBS and don’t respond objectively to blinded challenges. The authors in the above study discuss this as well. Most of the time clinically, gluten challenges are open, which do not in any way distinguish a real sensitivity from nocebo effects.

    The only way to sort this out is with blinded challenges, and that is what the current study does. When blinded challenges show no effect, then that trumps open or unblinded observations. I don’t think a strong case has ever been made for NCGS, and now this new study puts the burden of proof clearly back on the NCGS supporters.

  10. Teaseron 15 May 2014 at 2:52 pm

    @sanchem – Given the context of the study I thought WS = Gluten sensitivity.

    @Steven – In your assessment the first study I referenced does not qualify as a a good study to substantiate NCGS as a distinct condition? Aren’t DBPC with controls the hallmark of a well executed study?

    “……WS using a double-blind placebo-controlled (DBPC) challenge in the years 2001-2011. One hundred celiac disease (CD) patients and fifty IBS patients served as controls.””

    It appears to me this quote from your response:
    “Better understanding of NCGS is hampered by the lack of objective clinical diagnostic criteria and the absence of specific biomarkers.”

    Is answered here (from first linked study in my post):
    “As a whole group, the WS patients showed a higher frequency of anemia, weight loss, self-reported wheat intolerance, coexistent atopy, and food allergy in infancy than the IBS controls. There was also a higher frequency of positive serum assays for IgG/IgA anti-gliadin and cytometric basophil activation in “in vitro” assay. The main histology characteristic of WS patients was eosinophil infiltration of the duodenal and colon mucosa. Patients with WS alone were characterized by clinical features very similar to those found in CD patients. Patients with multiple food sensitivity were characterized by clinical features similar to those found in allergic patients.”

    Either way NCGS is a sticky-wicket.

    I would agree that the press or certain celebrities grab hold of early conclusions that may or may not be justified and compel people to take misguided action as a result.

    The exciting part is that there is a lot of research activity concerning NCGS. There are strong and ongoing arguments to be made for each position.

  11. Paulzon 15 May 2014 at 3:56 pm

    Cue the reporters blowing this one out of proportion.

    Maybe researchers should start including a bolded paragraph meant for the news media about how to properly cover their study. An Idiot Reporter’s Guide to This Paper. You can have it in a boilerplate warning at the beginning or end which informs them what common traps to avoid when reporting about the information in the study.

    “No, this Metamaterial study will not lead to invisibility cloaks in the near future. Do not reference Harry Potter.”

    “No, this study about cancer will not lead immediately to a cure for cancer any time in the foreseeable future.”

    “This study on aging will not be a cure for aging.”

  12. Steven Novellaon 15 May 2014 at 4:28 pm

    Teaser – WS is wheat sensitivity, CD is celiac disease. I think the findings we are seeing in this study are due to wheat allergy and CD, not NCGS. The eosinophilia in particular is a sign of allergy, which is ruled out by definition in NCGS.

    In any case, I’m just quoting the systematic reviews by researchers and experts. This is not my area of expertise. But I am a physician and I have particularly honed my sense over the years of when a syndrome has crossed the line to being convincing. You like to see some specific symptoms, or some specific biomarkers, or some specific response to blinded treatment or challenge. When we have only non-specific symptoms, overlap with other entities, difficult to replicate with blinding – those entities have a history of not panning out.

    As always, I am open to further evidence.

  13. johnmcon 15 May 2014 at 5:40 pm

    Oh come on, you’re not just “quoting the systematic reviews,” you’re using one study – with a sample size of 37 – as an excuse to ignore all of the other research suggesting a link between NCGS and chronic illness. And for crying out loud, EVERYONE in the FODMAPs study got sick. I know there a plenty of doctors who want to claim nocebo and go back to dismissing everyone with IBS and CFS as crazy, but I think it’s a lot more likely that they simply spoiled the freakin’ food.

    Alternate headline for the new Biesiekierski study: “Eating nothing but frozen food for months causes negative digestive symptoms.”

    So some people avoid gluten and you lump them in with “chronic Lyme, candida hypersensitivity, multiple chemical sensitivity, electromagnetic sensitivity, and a host of other vague syndromes.” I heard some people avoid lactose, do they believe in bigfoot aliens?

  14. BillyJoe7on 15 May 2014 at 6:29 pm

    SN: ” A diagnosis of Celiac can be confirmed with an antibody test or, if necessary, a stomach biopsy”

    That should be “duodenal biopsy”.
    The antibody test will be negative if you’re already on a gluten free diet.
    In the opinion of some, a positive antibody test should always be confirmed by a duodenal biopsy.

  15. jarandhelon 15 May 2014 at 9:50 pm

    Teaser:

    From what I see on that first study you cite, they didn’t do double-blind testing with a control group themselves. They looked at the charts of individuals who had been diagnosed with non-celiac wheat sensitivity using double-blind testing between 2001 and 2011. They also selected the charts of 100 random people with diagnosed celiac disease, and 50 random people with no sensitivity at all, as “controls”. They then looked for patterns/correlations in the medical histories of the two groups.

    But that doesn’t actually confirm the existence of the disease. The controls were not subject to the same double-blind testing and even individuals who were diagnosed with WS may not have undergone precisely the same testing, just some form of double-blind placebo-controlled test. Further, things can and do correlate in real life without any causal connection between them. For instance, US spending on science, space, and technology correlates with US deaths by hanging, strangling, and suffocation to more than 99.2%. http://www.tylervigen.com/view_correlation?id=1597 Looking for patterns in this way is probably a form of non causa pro causa fallacy known as the Texas Sharpshooter Effect. http://www.fallacyfiles.org/texsharp.html

  16. ginckgoon 15 May 2014 at 11:17 pm

    A couple of years ago I read somewhere (can’t recall where) that some of the apparent increase in digestive issues associated with eating bread may stem from the fact that a lot of bakeries no longer let the dough rise overnight, i.e. the time they allow the yeast to do it’s job. Some commercial bakeries have reduced the time down to less than 2 hours to save time.
    At first it sounded like a possible correlation, until I realised that yeast mainly digests the sugars (starches), and not the proteins (like gluten); though I think there is some effect on the gluten from the yeast as well.
    However, now that you indicate that FODMAPs are a possible culprit, it seems more realistic possibility again, as it included sugars (saccharides). Any thoughts?

  17. etatroon 16 May 2014 at 1:39 am

    Paulz- some journals do have an “author’s summary” which is supposed to serve this purpose, but I think they end up being more technical than originally intended by the journal. Example, skim through plos pathogens or plos biology. Researchers are to blame for this too because part of an article is to put the work within a “larger context” and the lazy or amateur thing to do is say it will lead to a cure for something. Reviewers can (and should, imo) recommend minor edits to such statements. I appreciate understatement like Watson & crick’s pithy 1953 paper, “It has not escaped our notice that the specific pairing we have postulated immediately suggests a possible copying mechanism for the genetic material.”

  18. RZtheRDon 16 May 2014 at 2:05 am

    An endoscopic biopsy is the gold standard for CD diagnosis:

    “The only way to confirm a celiac disease diagnosis is by having an endoscopic biopsy. A pathologist will assign a Marsh classification to the biopsy findings.”

    http://celiac.org/celiac-disease/diagnosing-celiac-disease/diagnosis/

  19. Iolaireon 16 May 2014 at 4:10 am

    My sister is one of those who has self-diagnosed gluten sensitivity, adopted a GF diet and now swears that her GI symptoms have abated as a result. The interesting thing though is that if she eats something she thinks contains gluten, even if it doesn’t, she gets GI problems afterwards, and if she eats foods containing gluten without knowing about it, she doesn’t get the symptoms. This makes me suspicious that something else is going on at least in this case, though obviously not for everyone.

    As a family we are all prone to anxiety disorders which include GI symptoms. I suspect that my sister’s diet gives her a feeling of control over her life which results in less anxiety and fewer symptoms. My way of dealing with the same issues is to work on the anxiety and eat whatever I like.

    One wonders why people pick on gluten as the ‘bad guy’ when their stomachs ache. I get pretty dramatic GI effects from eating too many cruciferous vegetables, or beans, but you don’t hear people talking about ‘cauliflower intolerance’ or ‘lentil allergy’ so much … or do you?

  20. Steven Novellaon 16 May 2014 at 7:41 am

    John – I did’t just dismiss it all as nocebo – I specifically laid out three possible alternatives to NCGS being a distinct entity. I am also not discounting that some people do have NCGS, but I don’t think this has been clearly established.

    Yes, the new study (which was done by the same researcher who previously published research showing an association with gluten) casts serious doubt on the NCGS. But in the comment above I referenced a systematic review, one of the ones I read is researching this article. (here it is again: http://www.sciencedirect.com/science/article/pii/S1052515712000980)

    They cite the specific problems that cast any new diagnosis into question – lack of clear clinical features or biomarkers. This puts a question mark next to any clinical diagnosis, and there are many in medicine.

    And don’t miss my primary point – the greatest risk of assuming prematurely that NCGS is real and has a specific cause is missing what is really going on. It’s an invitation to stop asking important questions, or limiting future research to an area confined by false assumptions.

  21. BillyJoe7on 16 May 2014 at 8:03 am

    ccbowers: “There seems to be a persisting belief among some cooks that something is lost when you are too precise (e.g. avoiding the use a thermometer or measuring cups or scale). Of course the only thing that is lost is consistency”

    Then you’ve never seen my father in action in the kitchen. Not a scale or measuring cup in sight. Superb dish every time. The only downside was not being able to hand down his recipes. I’m reminded of him every Christmas when there are no chicken croquettes.

  22. ccbowerson 16 May 2014 at 10:28 am

    “I heard some people avoid lactose, do they believe in bigfoot aliens?”

    Johnmc- Steve addressed your other complaints, but I’ve noticed that when people want to take offense, that they interpret a person’s comments in the least charitable way (whether intentional or not), often to the point of complete misrepresentation.

    When Steve compares “chronic Lyme, candida hypersensitivity, multiple chemical sensitivity, electromagnetic sensitivity, and a host of other vague syndromes,” he is clearly comparing it to the vagueness of the symptoms of non-celiac gluten sensitivity (NCGS). Instead of reading what he wrote, which was a comparison of vague syndromes, you imply that he is insulting the individuals who have these symptoms. That is something you are projecting on his message, as he neither said nor implied any insult to individuals experiencing symptoms. None of those syndromes are particularly well defined, but the analogy to bigfoot or aliens is nonsensical.

  23. ccbowerson 16 May 2014 at 10:34 am

    BJ7-

    Some recipes are sufficiently flexible such that winging it works fine, and some people are more skilled than others, but… nothing is lost, and much is gained with precision, and for much of baking precision is a must. And yes, not writing stuff down means information is lost. Even when I think I’ll never forget how to do something I’ll try to write it down, because I know that next month I’ll even forget that there was even something to remember.

  24. Lumen2222on 16 May 2014 at 10:53 am

    “One wonders why people pick on gluten as the ‘bad guy’ when their stomachs ache. I get pretty dramatic GI effects from eating too many cruciferous vegetables, or beans, but you don’t hear people talking about ‘cauliflower intolerance’ or ‘lentil allergy’ so much … or do you?”

    Lentils and cauliflower aren’t common enough. In order for a food restriction to feed the sense of control that you’re referencing it needs to be something common. So much so that eliminating it from your diet requires daily attention and mental energy. The challenge of eliminating the food needs to be difficult or else it will not offer the sense of reward and control that comes with defeating the difficult challenge. Gluten is by far not the only “bad guy”, just one of the most recent on the scene. L.V. Anderson just did an interesting review of a pop diet book about the evils of sugar over at slate that reminds me of the gluten fad.

    http://www.slate.com/blogs/browbeat/2014/04/18/year_of_no_sugar_reviewed_what_eve_schaub_s_no_fructose_memoir_says_about.html

    I think it’s important to acknowledge that there is a wide spectrum here. Celiacs is a real and really awful disease. NCGS is questionable but possibly there is something going on there. But the people in the Kimmel Video are a completely different layer, and they exhibit a level of ignorance about food that is disturbing given the extremely restrictive diets they claim to be following. Several of them don’t even know which grains actually contain gluten (rice does not contain gluten), which to me is a much bigger problem than not understanding that gluten is a protein that determines the texture of baked goods. I only understand it because of years of fascination with baking.

  25. protohominidon 16 May 2014 at 11:14 am

    Steven — you write that “It has not been established that NCGS exists,” but I think it’s worth pointing out that it was Biesiekierski’s own previous study from 2011 that’s considered the landmark study that established that gluten-free diets really do ease symptoms in some non-celiac people. And it’s this study that largely established NCGS as a “real entity”.

    “Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial.” Am J Gastroenterol, 2011; 106:508-514.

    Biesiekierski’s new study complicates our understanding of what’s going on, but it doesn’t change the fact that a lot of people really do experience relief from a variety of symptoms by eliminating gluten from their diet. This has been established. So it seems to be misleading to dismiss it all as a possible fad. In fact, it may be that there’s a bit of a fad to label NCGS a fad, because it’s always fun to wave one’s hands about the madness of crowds.

    It could be, as you note, that it’s not the elimination of gluten, per se, that’s causing the relief of symptoms, but rather the elimination of something else (FODMAPs) that happens to be in gluten-containing food.

    Though from a practical standpoint, whether it’s FODMAPs or gluten doesn’t make much difference to the people who have found a way to ease their symptoms. The gluten-free diet works for them.

    But there’s another possibility, that’s pointed out in an editorial in the same issue of Gastroenterology as Biesiekierski’s new study. I’ll quote: “The other clear possibility is that NCGS is a real entity but confounded by a low FODMAP diet by an unclear mechanism.”

    In other words, something’s going on. But we’re not exactly sure what it is, or how it works.

  26. protohominidon 16 May 2014 at 11:36 am

    >>the people in the Kimmel Video are a completely different layer, and they exhibit a level of ignorance about food that is disturbing given the extremely restrictive diets they claim to be following.<<

    Lumen2222 — Jimmy Kimmel is a talk-show host known for perpetrating hoaxes. It's quite possible all the people in that video were actors being paid to appear annoyingly ignorant.

  27. grabulaon 16 May 2014 at 10:23 pm

    ““I heard some people avoid lactose, do they believe in bigfoot aliens?”

    I’m lactose intolerant, and yes, I’ve seen THEM

  28. lliwdoogon 17 May 2014 at 2:35 am

    Could be that each “NCGS” case is individual so maybe there is no such thing as many right answers for NCGS as a group such as maybe a sensitivity to certain chemicals in the food or they have other chronic illnesses that makes digesting many foods difficult. Could explain why some NCGS have problems eating some non-gluten foods and have no symptoms after eating some gluten containing foods. However, they’re NCGS not celiac so they can tolerate consuming some gluten depending on individual body conditions. Some can tolerate more and some less. Considering factor like this, could we still determine that NCGS is a pocebo effect? Just wondering…

  29. Steven Novellaon 17 May 2014 at 9:57 am

    proto – saying “something’s going on. But we’re not exactly sure what it is, or how it works.” is basically the position I outlined. The conclusion that the something is a discrete medical entity called NCGS has not been established. Having evidence that suggests it is real is not the threshold for establishing that it is.

    And I know that it was Biesiekierski’s own study that first showed NCGS may be real, but then she did a good follow up study that casts doubt on her previous conclusions (or at least really complicates them). That’s good science.

    It matters for many reasons. Gluten free diets are difficult to maintain and can be expensive. If gluten is not the real culprit, then perhaps less draconian or expensive methods may work just as well. It also matters to our basic understanding, and you cannot predict the downstream benefits of improved basic scientific understanding.

    As I wrote, I think there are multiple possibilities, and they all may be true at the same time for different people. If someone does not really have gluten sensitivity, but rather just has intermittent GI symptoms from some other cause (which could even be anxiety) and confirmation bias falsely leads them to the conclusion that it’s gluten, they will be wasting huge effort and money on a false conclusion, and may be missing the opportunity to find and address the real cause.

  30. johnmcon 18 May 2014 at 8:24 am

    While we’re on the topic of confirmation bias, where is the skepticism for this new study, where they managed to make everyone sicker at the end? What are the specific mechanisms and biomarkers of FODMAP sensitivity?

    Here are the obvious problems with the new study:

    -They strictly excluded a lot of people who were HLA-DQA2/8 positive and on a gluten-free diet. Prior NCGS studies show that those self-selecting for GFD have a higher proportion of these at-risk-for-Celiac haplotypes, but these people were completely excluded from the study unless they had been consuming gluten for long enough to have a conclusive CD test.

    -Improvement on low FODMAPs during the introduction. These were the first meals consumed, so maybe there was a nocebo effect that didn’t kick in until two weeks later, or maybe these pre-packed, highly fermentable meals just didn’t keep too well?

    -Ultimately, everybody got sick. The “gluten-free” food was prepared in a commercial kitchen then frozen for weeks. The protocol required participants to eat frozen meals for ~6 weeks, and everyone got worse.

    -Other studies exist which include actual NCGS patients with HLA-DQ2/8, and the conclusions (as well as mechanisms and biomarkers) are much more solid: http://www.biomedcentral.com/1471-230X/14/26

    -Of course, confirmation bias: “I knew NCGS was a bunch of BS! Now we have evi… let’s call this evidence”

  31. banyanon 19 May 2014 at 10:03 pm

    This is the reaction blog I’ve been seeing people begin to share: http://chriskresser.com/is-gluten-sensitivity-real

    It’s more-or-less saying, “this study doesn’t prove it’s not real and even if it isn’t real it doesn’t change anything.” Then it gives a helpful way for you to self-diagnose gluten sensitivity in a completely uncontrolled way.

  32. Bill Openthalton 20 May 2014 at 7:29 am

    Long time ago, when I was at ‘varsity, I took an extremely well-taught parasitology course, leading to an amazing number of self-diagnosed parasite infections in the student body. Observing 200 students all obsessively scratching their crotches, anxiously discussing stool quality or rehashing the ravages of hookworm infection would have been hilarious if I hadn’t been an active participant. We all knew it was imaginary, but we all experienced (or believed we experienced) the symptoms of an infestation with the “parasite-du-jour”.

    The experience did show how open humans are to suggestion. That being said, I should stop eating bread because I am feeling a bit bloated :-) .

  33. BillyJoe7on 20 May 2014 at 7:58 am

    ccbowers,

    “Some recipes are sufficiently flexible such that winging it works fine, and some people are more skilled than others, but… nothing is lost, and much is gained with precision, and for much of baking precision is a must”

    I don’t disagree. I would need to write everything down and use precise measuring implements. But some people can keep all their recipes in their heads and can measure accurately without having to use any measuring implements. My father was one of those people. I guess he was like a trained musican who doesn’t need the music sheets anymore.

  34. Robert Christon 24 May 2014 at 12:16 am

    Not too long ago the prevalence of CD was thought to be around 1 in 1000. That’s a pretty big discrepancy. A good example of why it’s not very prudent to assume somebodies complaints are strictly psychological. Which might seem logical when they self diagnosed with something like MCS, chronic lyme, candida, EMS, etc. Not saying the job is easy cause this doesn’t even include the possibility of whiners, complainers, hypochondriacs, disability seeking malingers, copycats, attention whores, etc. Those live relatively normal lives though. Don’t fit the 6 months unable to work. Do engage in activities, hobbies, socialize, barhop, drink, smoke, get high, play, exercise, screw just like ordinary people.

    Another point I understand CD can’t be confirmed unless you go off the GF diet. As much as I would like closure as to what’s ailing me that simply isn’t something I want to do. (Before Oboma couldn’t afford it either.) Be nice if somebody figured out a way to make the diagnosis without having the patient go off the GF diet. The only people who are going to do that are people that in fact are caught up in the fad aspect of it.

    It would seem to me very likely that a “gluten type” sensitivity could be caused by something like tropical sprue seeing that the end results are the same. (flattening of the villi) Or some other pathogen is causing it maybe something similar to helicobacter pylori, clostridium difficile, an amoeba or protozoa similar to what’s suspected with tropical sprue. Maybe a virus like aids. Maybe some weird immune disorder that doesn’t need a pathogen like cieliac. Yet to be discovered. According to mold Quacks that keep records there is overlap in people with Mold Related Illness (MRI) and Celiac like symptoms. Too bad that no “science based” physicians takes MRI seriously when it destroys so many lives. “My opinion I guess” the opinion of somebody who was forced out of his home (a very moldy one) having to sell it at way less than market value but did so happily. I still get sick when I lack the good judgment to stay out of old water damaged buildings. So you can tell me I’m wrong but that won’t ever change what is cause what is, is what is, and if it is what I say it is people are going to continue to suffer horribly into the unforeseeable future.
    While I don’t believe in MCS par-say, I do believe there is some truth to it. I can’t stand perfume it does make me nauseous dizzy weak if I get stuck in an elevator with someone who doesn’t know how much is too much. I can’t smoke cigarettes without getting pretty dizzy, weak, nauseous. Tried it for about a week (2 packs) Did kind of get hooked to them (the longer I went without the more I wanted one even though they make me dizzy weak and sick. Had no problem quitting because of this. (when something makes you sick its quite a motivator) 20 years ago it was one of the hardest things I’d ever done. Took an incredible amount of motivation. Drinking the same. Can’t drink much more than 3 oz of whiskey without getting weak and the next day usually don’t feel well either. Smoking pot makes me practically retarded. The insulation on my fridge caught on fire once (grease fire) and I got a couple of breaths of that putting it out. I was sick (very dizzy, nauseous and weak) the rest of that day and probably the next couple (I forget exactly) 20 years ago I used to cut cars in half with torches and inhaled all kinds of crap with no apparent symptoms. So while you might be able to do one of those famous test’s where you put something like a plastic rose under my chair and I might not get sick from that I don’t think you’ve made your case “there’s no such thing as MCS”
    As I think somebody else alluded to with so many variables it would be very hard to definitely come to the conclusion NCGS does not exist. Unfortunately a lot of time and money needs to be put into this kind of thing. The pessimist (and conspiracy monger) in me says that’s never going to happen. After almost 20 years of unbelievable hell I do feel a little fucked over by main stream medicine but love what Neurolgica, quackwatch&cast, SGU, Randi and all the others are doing and appreciate the effort.

  35. zappa81on 29 May 2014 at 1:00 am

    One positive outcome of the gluten free fad is that for genuine celiacs there is now so much nice food easily available to them, which probably wouldn’t be the case had it not been taken up so earnestly by the hypochondriac masses! :p

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