Talk:Non-celiac gluten sensitivity

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Needs rewrite per MEDRS[edit]

Looks like this may be a nocebo effect rather than a specific condition per the research. The article needs a rewrite as such. Recent news articles have been citing the following three studies:

--Ronz (talk) 22:24, 12 January 2015 (UTC)

The third reference you cite is a review article, but the first are not review articles and therefore correspond less to MEDRS than the references that are already cited in the article. The concern regarding not specifically gluten-based sensitivities is actually already present in the article (see the section "Non-gluten sensitivities"). I have now expanded the "Research" section further regarding the open questions (including the question of nocebo in the sense of the need for double-blind placebo-controlled studies to distiguish against what is referred to as the "fad component" of GFD) and providing more emphasis on this also in the lead.
I think the NPOV template that you added to the article can now be removed; if you disagree, do specify what exactly should be added (with a MEDRS review article as inline reference) or simply add it directly. --Chris Howard (talk) 20:10, 13 January 2015 (UTC)
Thanks! I don't think we can do much better with what sources are available. It will be interesting to see where the research leads. --Ronz (talk) 21:58, 13 January 2015 (UTC)
We might want to revisit the lede at some point. Maybe wait until another review or similar publications become available. --Ronz (talk) 22:02, 13 January 2015 (UTC)
Yes indeed, --Chris Howard (talk) 22:18, 13 January 2015 (UTC)


Sabatino et al 2015[edit]

Re: [1]: I tracked down the reference, but don't have access: http://www.cghjournal.org/article/S1542-3565%2815%2900153-6/abstract --Ronz (talk) 17:14, 4 March 2015 (UTC)

The Sabatino 2015 reference is actually already referenced in the preceding sentence. Note that it is a primary source and not a review article. There had initially been a proposal to separately summarize and reference it (Difflink) and then I changed it to a mere further reference (Difflink) for reason of WP:MEDRS.
I am not dead-set against separately summarizing and referencing it, but I am not convinced the Sabatino 2015 article, taken by itself, is relevant enough under WP:MEDRS. (That could change quickly once it's cited by a reveiw article.) --Chris Howard (talk) 23:05, 4 March 2015 (UTC)

Probably doesn't exist[edit]

Article needs something about it probably not existing[2] 24.190.51.21 (talk) 03:39, 4 May 2015 (UTC)

Questionable ATI Comparisons[edit]

The statement, "Detlef Schuppan, whose research team discovered this role of the ATIs, emphasizes that modern wheat cultivations are bred to have a high ATI content and that this may play a role in the onset and course of disorders such as celiac disease and gluten sensitivity," may be inaccurate. Schuppan's reference for this statement is (Ryan, 1990)[3]. I read Ryan 1990 and could not find anything at all about 'drastic increase of ATI content.'

A new 2015 paper [4] says, "Although Junker and others (2012) indicated that ATIs may have been increased through modern wheat breeding programs, no studies that directly compared heritage and modern wheat genotypes for inhibitory activity against human enzymes were found. ATI activity for only 1 variety that was released before 1950 was reported in the literature."

This seems to imply that Schuppan may have exaggerated or invented his claims. JamesPem (talk) 03:42, 2 September 2015 (UTC)

Interesting point. You might want to add a sentence to the article stating that it has been questioned whether there is sufficient empirical evidence for this claim. In the meantime, I'll start by doing a (minor) change of wording (replacing "emphasizes that" with "holds that") to better reflect that it is Schuppan's view at least, but is not necessarily generally accepted. --Chris Howard (talk) 22:06, 2 September 2015 (UTC)

An interesting paper[edit]

See this paper: http://www.ncbi.nlm.nih.gov/pubmed/23648697 , titled "No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates." for a interesting study on this. -- The Anome (talk) 19:15, 31 October 2015 (UTC)

This article (Biesiekierski JR, Peters SL, Newnham ED, et al. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology 2013;145:320-8 ) cited by @The Anome: is just one study among many and is a primary source. It's not enough "to question the existence" of the SGNC. Wikipedia articles must not contain original research. We must rely on secondary sources. It's true that there are many unsettled issues that need clarification, but NCGS has been recognized as a new gluten related syndrome from the scientific community and it has been included in the new list of gluten-related disorders published in 2012. For example, probably a subgroup of patients with NCGS need to removal not only gluten, but also FODMAPs, and it seems that other proteins contained in wheat have the potential to cause symptoms experienced by some NCGS patients.
Here are the conclusions about the mentioned study by Biesiekierski et al. in subsequent revision works and about non-celiac gluten sensitivity:
"In a recent study by Biesiekierski et al[77] the concept of NCGS as a syndrome has been questioned. In that study, patients with self-reported NCGS on a GFD showed further improvement when placed on a low FODMAP diet and blinded gluten re-introduction led to no specific or dose-dependent effect. However, in those patients the reintroduction of both gluten and whey protein probably had a nocebo effect similar in all groups, which might have concealed the true effect of gluten/wheat re-introduction."
77. Biesiekierski JR, Peters SL, Newnham ED, et al. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology 2013;145:320-8
"In the last few years, however, several study results have been published that have proved that gluten intolerance can also affect people who do not suffer from any of the above mentioned diseases. The new syndrome has been named non-celiac gluten sensitivity (NCGS) or gluten sensitivity (GS). It has been included in the new list of gluten-related disorders published in 2012. Researchers believe that NCGS is the most common syndrome of gluten intolerance."
"A subsequent study of 37 patients found that the effect of gluten exposure in patients with gluten sensitive irritable bowel syndrome was nullified by the use of a diet low in FODMAPs (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols), indicating that other dietary products may be important in some people with NCGS."
138. Biesiekierski JR, Peters SL, Newnham ED, et al. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology 2013;145:320-8
  • Volta U, Caio G, Tovoli F, De Giorgio R (2014). "Non-celiac gluten sensitivity: An emerging syndrome with many unsettled issues". Italian Journal of Medicine. 8: 225–231. doi:10.4081/itjm.2013.461. 
"GFD leads to the complete disappearance of symptoms in a proportion of patients with NCGS, whereas in other cases the improvement after GFD is only partial. In these cases a low FODMAPs diet in addition to gluten withdrawal can significantly improve the clinical picture.
Conclusions
Although NCGS has been recognized as a new gluten related syndrome from the scientific community, our knowledge on this condition is still in progress and there are many unsettled issues that need clarification.36 Innate immunity seems to be the main trigger of NCGS, but further studies are awaited to explore the possible role of adaptive immunity.37,38A low grade of inflammation in intestinal mucosa with intestinal permeability changes and alterations of intestinal microbiota are likely relevant in the development of this syndrome, but their role is far to be established.1,2,6,7 A close link between gluten and symptom generation has been clearly demonstrated in NCGS patients, but other proteins contained in wheat have the potential to cause symptoms experienced by NCGS patients. In this context, wheat ATIs, which are proteins highly resistant to intestinal proteases and elicit innate immunity, could trigger NCGS.21 It has been demonstrated that a subgroup of patients with NCGS recognizes gluten as the only cause of symptoms, but in other NCGS patients a multiple food hypersensitivity underlies the clinical picture.39 In this context, it has been shown that a diet rich in FODMAPs, present not only in gluten-containing cereals, but also in milk, honey and legumes might trigger NCGS.31 Overall, gluten sensitivity can be viewed as a mixed bag with many triggers (gluten, ATIs, FODMAPs) evoking the clinical picture (Figure 1). Furthermore, chemical additives, such as glutamates, benzoates, sulphites and nitrates, which are added to many commercial products might have a role in evoking functional gastrointestinal symptoms of NCGS and other disorders characterized by a mild intestinal inflammation such as IBS.6,22 In this respect, a subgroup of NCGS patients are not expected to improve by eating commercially available gluten-free products (as they are usually rich of additives and preservatives), rather they improve with a diet based on natural gluten-free foods.6"
31. Biesiekierski JR, Peters SL, Newnham ED, et al. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology 2013;145:320-8
Thus, I will undo the latest revision by Rhoark.
Best regards. --BallenaBlanca (talk) 18:12, 1 November 2015 (UTC)
@BallenaBlanca: I'm well aware that it doesn't pass WP:MEDRS in that form. That's why I posted it here, instead of putting it into the article. But it's still worth knowing about. There will no doubt soon be more research to try to replicate that study, and get more coherence one way or another on the issue. -- The Anome (talk) 18:59, 1 November 2015 (UTC)

Scientific consensus[edit]

It is, I think, fair to point out that there is a lack of scientific consensus that NCGS is a real thing - it is not yet known whether those who appear to benefit from a GF diet in the absence of coeliac are in fact sensitive to gluten or some other component of wheat. There's no real problem with stating the uncertainty here, it doesn't mean the symptoms aren't real and it doesn't mean that some people aren't allergic or otherwise sensitive to wheat, but we coealiacs do get annoyed by alt-med glutenbollocks and it is very clear, as an active follower of the research, that there is no unequivocal specific link between symptoms and gluten, specifically, in those who do not have coaliac (as opposed to undiagnosed coeliacs, of whom there are, according to every estimate, a vast number). Guy (Help!) 13:37, 14 December 2015 (UTC)

@JzG: http://www.sciencealert.com/scientists-who-found-evidence-for-gluten-sensitivity-have-now-shown-it-doesn-t-exist is not a reliable source. I have edit (→‎Scientific consensus: Rewording and replacing non reliable source with peer-reviewed review articles, indexed in PubMed).
NCGS is a controversial syndrome (it is obvious...), but the questions are not about "its existence". There are doubts about pathogenesis (gluten, other proteins in gluten-containing cereals, FODMAPs in gluten-containing cereals...?), diagnosis protocol (not biomarkers available currently, how and when to make a challenge test...) , treatment (is it a transient or a permanent condition?, what is the degree of tolerance of gluten cross contamination?...), and denomination... but it doesn't mean that the disease doesn't exist. All these controversies are reflected in the page.
Lack of scientific consensus? Why do you delete information perfectly sourced, just published at Gastroenterology, the most prominent journal in the field of gastrointestinal disease and number one in impact factor?
Fasano A, Sapone A, Zevallos V, Schuppan D (May 2015). "Nonceliac gluten sensitivity". Gastroenterology (Review) 148 (6): 1195–204. doi:10.1053/j.gastro.2014.12.049. PMID 25583468

Since 2010, the definition of NCGS has been discussed at 3 consensus conferences, which led to 3 publications. 13–15 Given the uncertainties about this clinical entity and the lack of diagnostic biomarkers, all 3 reports concluded that NCGS should be defined by the following exclusionary criteria: a clinical entity induced by the ingestion of gluten leading to intestinal and/or extraintestinal symptoms that resolve once the glutencontaining foodstuff is eliminated from the diet, and when celiac disease and wheat allergy have been ruled out. One of the most controversial and highly debated discussions concerns the role of gluten in causing NCGS. Recent reports have indicated that gluten might not be the cause of NCGS, and some investigators still question whether NCGS as a real clinical entity. (...) Cereals such as wheat and rye, when consumed in normal quantities, are only minor sources of FODMAPs in the daily diet (Table 1). Therefore, gluten-containing grains are not likely to induce IBS exclusively via FODMAPs. In contrast, there is growing evidence that other proteins that are unique to gluten-containing cereals can elicit an innate immune response that leads to NCGS, raising a nomenclature issue. For this reason, wheat sensitivity, rather than gluten sensitivity, seems to be a more appropriate term, keeping in mind that other gluten-containing grains such as barley and rye also can trigger the symptoms.

Best regards. --BallenaBlanca (talk) 15:23, 14 December 2015 (UTC)
@JzG: also, your link talks about studies by Biesiekierski et al.. But there are subsequent revisions that analyzed the results of these studies, and include other double-blind placebo controlled challenges by other authors, published on verifiable peer-reviewed and PubMed indexed secondary sources, and the conclusions are already on the page, Research section.
The specific paragraph that talks about the studies by Biesiekierski et al. is this one:

In a 2013 double-blind placebo-controlled trial (DBPC) by Biesiekierski et al. in a few patients with irritable bowel syndrome (IBS), the authors found no difference between gluten or placebo groups and the concept of NCGS as a syndrome was questioned. Nevertheless, this study had design errors and an incorrect selection of participants, which could have masked the true effect of gluten reintroduction.[1][2]

All that without forget that these studies have only analyzed patients with gastrointestinal symptoms (IBS-Diarrhoea like symptoms); gastrointestinal symptoms may be the "minor" concern of NCGS and only a small part of syndrome, and are not always present.
Best regards. --BallenaBlanca (talk) 16:50, 14 December 2015 (UTC)
Yes, the Forbes commentary on the findings is a reliable source because it is an article in a publication which has a reputation for accurate science reporting (e.g. by Steven Salzberg) and discusses exactly the point at issue: how scientific consensus develops. Right now there is no scientific consensus that NCGS is actually caused by sensitivity to gluten. That is not in the least bit threatening to anybody unless they have an ideological commitment to there being a definitive link between NCGS and gluten. Is it gluten or FODMAPS? Can you definitively say that there is scientific consensus for one and not the other or both?
Me, I am interested in the scientific debate, which clearly is not settled and is a very interesting example of science working as designed in an area which is of significant personal relevance to me as a coeliac. I'm especially interested in the difference between whatever real condition is going on and the epidemic of quack-diagnosed "gluten sensitivity" divined by means of worthless tests and treated with worthless products - a form of predation which demands that we treat the subject with some care IMO. Guy (Help!) 18:58, 14 December 2015 (UTC)
I could take hours talking about it! I have my own opinion, I do not agree with most of conclusions of colleagues, but I'll keep out my opinion and I'll just be neutral, limiting myself to use secondary sources currently available, with all points of view. One thing I can tell you: one of the biggest mistakes is the lack of recognition and diagnosis of CD. Best regards. --BallenaBlanca (talk) 19:27, 14 December 2015 (UTC)
Oh I have no doubt, and I do understand that you are doing good work, I just feel that we need to be careful to avoid giving the impression that there is robust science saying that gluten (specifically) is responsible for these symptoms, since I see no evidence the science is anywhere near settled on that, and as usual quacks are filling the vacuum with bullshit. I don't suppose you use hair analysis or Vega testing to divine gluten sensitivity... Guy (Help!) 22:21, 14 December 2015 (UTC)
Face-smile.svg --BallenaBlanca (talk) 11:32, 15 December 2015 (UTC)

As a user reading this page for the first time, I can tell you that the article comes across as EXTREMELY misleading. The significance of the 2013 Biesiekierski paper should be font and centre: if this disorder exists, then it is misnamed, as the best studies reviewed to date show no GLUTEN-specific effects. Seriously, if the advocates for this illness who seem to maintain this page in its current form want to be perceived as credible, the 2013 paper has to be addressed up front and the name of the disorder needs to be acknowledged to probably be inaccurate.Mrnorwood (talk) 16:00, 2 June 2016 (UTC)

The small 2013 Biesiekierski study with 37 persons with irritable bowel syndrome had several design errors and an incorrect selection of participants, so the results are not conclusive nor representative (explained above).[1][2] In addition, it is a primary source and we must document with secondary sources per WP:MEDRS. The reviews cited on the page have analyzed the results of this study and many others performed so far.
The controversy about the name is already reflected in the lead: "The pathogenesis of NCGS is not yet well understood. There is evidence that not only gliadin (main cytotoxic antigen of gluten), but also other proteins present in gluten and gluten-containing cereals (wheat, rye, barley, and their derivatives) may have a role in the development of symptoms.[3] FODMAPs are present in gluten-containing grains and have recently been identified as a possible cause of gastrointestinal symptoms in NCGS patients,[3][4][5] but do not justify extra-digestive symptoms.[3] For these reasons, NCGS is a controversial syndrome[6] and some authors still question it.[7][8] It has been suggested that "non-celiac wheat sensitivity" is a more appropriate term, without forgetting that other gluten-containing cereals are implicated in the development of symptoms.[7][9]"
Best regards. --BallenaBlanca (talk) 17:45, 2 June 2016 (UTC)

References

  1. ^ a b Aziz I, Hadjivassiliou M, Sanders DS (Sep 2015). "The spectrum of noncoeliac gluten sensitivity". Nat Rev Gastroenterol Hepatol (Review). 12 (9): 516–26. PMID 26122473. doi:10.1038/nrgastro.2015.107. In fact, the effects of gluten were questioned after it was demonstrated that individuals with self-reported NCGS already on a GFD further benefited when placed on a low FODMAP diet.37 Furthermore, the 37 participants in this study then underwent a DBPC crossover trial whereby they received high-dose gluten (16 g gluten per day), low-dose gluten (2 g gluten and 14 g whey protein per day) or control (16 g whey protein per day) for 1 week followed by a washout period of at least 2 weeks before switching to the next diet. The investigators found no specific or dose-dependent effect of gluten.37 However, recruitment for this study was through media advertisement and many of the individuals presenting with self-reported NCGS were still symptomatic while on their GFD, recording visual analogue scale ratings of up to 60; this finding might not be reflective of those who truly have NCGS. Also, the DBPC crossover trial showed a nocebo response among the three arms, which suggests an anticipatory effect of the crossover study design. (…) 37. Biesiekierski, J. R. et al. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology 145, 320–328 (2013). 
  2. ^ a b Elli L, Branchi F, Tomba C, Villalta D, Norsa L, Ferretti F, Roncoroni L, Bardella MT (Jun 2015). "Diagnosis of gluten related disorders: Celiac disease, wheat allergy and non-celiac gluten sensitivity". World J Gastroenterol (Review). 21 (23): 7110–9. PMC 4476872Freely accessible. PMID 26109797. doi:10.3748/wjg.v21.i23.7110. In a recent study by Biesiekierski et al[77] the concept of NCGS as a syndrome has been questioned. In that study, patients with self-reported NCGS on a GFD showed further improvement when placed on a low FODMAP diet and blinded gluten re-introduction led to no specific or dose-dependent effect. However, in those patients the reintroduction of both gluten and whey protein probably had a nocebo effect similar in all groups, which might have concealed the true effect of gluten/wheat re-introduction. (…) 77. Biesiekierski JR, Peters SL, Newnham ED, Rosella O, Muir JG, Gibson PR. "No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates." Gastroenterology. 2013;145:320–8.e1-320-8.e3. 
  3. ^ a b c Fasano A, Sapone A, Zevallos V, Schuppan D (May 2015). "Nonceliac gluten sensitivity". Gastroenterology (Review). 148 (6): 1195–204. PMID 25583468. doi:10.1053/j.gastro.2014.12.049. 
  4. ^ Ontiveros N, Hardy MY, Cabrera-Chavez F (2015). "Assessing of Celiac Disease and Nonceliac Gluten Sensitivity". Gastroenterology Research and Practice (Review). 2015: 723954. PMC 4429206Freely accessible. PMID 26064097. doi:10.1155/2015/723954. 
  5. ^ Volta U, Caio G, Tovoli F, De Giorgio R (2013). "Non-celiac gluten sensitivity: questions still to be answered despite increasing awareness". Cellular and Molecular Immunology (Review). 10 (5): 383–392. ISSN 1672-7681. PMC 4003198Freely accessible. PMID 23934026. doi:10.1038/cmi.2013.28. 
  6. ^ Vriezinga SL, Schweizer JJ, Koning F, Mearin ML (Sep 2015). "Coeliac disease and gluten-related disorders in childhood". Nat Rev Gastroenterol Hepatol (Review). 12 (9): 527–36. PMID 26100369. doi:10.1038/nrgastro.2015.98. 
  7. ^ a b Fasano A, Sapone A, Zevallos V, Schuppan D (May 2015). "Nonceliac gluten sensitivity". Gastroenterology (Review). 148 (6): 1195–204. PMID 25583468. doi:10.1053/j.gastro.2014.12.049. One of the most controversial and highly debated discussions concerns the role of gluten in causing NCGS. Recent reports have indicated that gluten might not be the cause of NCGS, and some investigators still question whether NCGS as a real clinical entity. (...) Cereals such as wheat and rye, when consumed in normal quantities, are only minor sources of FODMAPs in the daily diet (Table 1). Therefore, gluten-containing grains are not likely to induce IBS exclusively via FODMAPs. In contrast, there is growing evidence that other proteins that are unique to gluten-containing cereals can elicit an innate immune response that leads to NCGS, raising a nomenclature issue. For this reason, wheat sensitivity, rather than gluten sensitivity, seems to be a more appropriate term, keeping in mind that other gluten-containing grains such as barley and rye also can trigger the symptoms. 
  8. ^ Makharia A, Catassi C, Makharia GK (2015). "The Overlap between Irritable Bowel Syndrome and Non-Celiac Gluten Sensitivity: A Clinical Dilemma". Nutrients. 7 (12): 10417–26. PMC 4690093Freely accessible. PMID 26690475. doi:10.3390/nu7125541. 
  9. ^ Schuppan D, Pickert G, Ashfaq-Khan M, Zevallos V (Jun 2015). "Non-celiac wheat sensitivity: differential diagnosis, triggers and implications". Best Pract Res Clin Gastroenterol (Review). 29 (3): 469–76. PMID 26060111. doi:10.1016/j.bpg.2015.04.002. 

Research[edit]

I will edit Research section, to rescue some information deleted/modified by @Zefr:.

It is important:

Best regards. --BallenaBlanca (talk) 18:04, 14 December 2015 (UTC)

BallenaBlanca - as you are an expert in this field (your User page), you have contributed considerably by writing much of the article, but I am concerned that you do not retain WP:NPOV and may be WP:COI in rewriting/citing either your own work or that of colleagues close to you professionally. Also, these comments summarized above for the Research section perpetuate WP:NOTJARGON and are of little use to a common encyclopedia user like a high school student exploring whether she has NCGS, so please adhere to WP:NOTJOURNAL and WP:NOTADVICE. --Zefr (talk) 18:29, 14 December 2015 (UTC)
Very thanks, @Zefr:, no matter, there is no WP:COI and I always look for all points of view to fit WP:NPOV. My work is based on reliable secondary review sources. NCGS page does not differ from other Wikipedia pages of Medicine. Anyway, I will consider all your advices and reflect on it. As you can see, I have accepted most of your changes to the page. I sincerely appreciate the work you've done reviewing it. Best regards and thanks again. --BallenaBlanca (talk) 18:45, 14 December 2015 (UTC)
Just be wary of the tendency of experts to see certainty where in fact there is none. Other doctors who specialise in gastroenterology are not convinced that gluten causes the symptoms. Science is inherently humble, medicine perhaps not so much, because in medicine the appeal to authority is still arguably valid, whereas in science it is not. Guy (Help!) 19:00, 14 December 2015 (UTC)
NCGS page does not reflect any certainty. It talks about all the doubts that currently exist. Best regards. --BallenaBlanca (talk) 19:30, 14 December 2015 (UTC)

──────────────────────────────────────────────────────────────────────────────────────────────────── @Zefr:I have edited the page (→‎Celiac disease: CD prevalence. Not vague, not meaningless. Source: systematic review "Systematic review: noncoeliac gluten sensitivity". Aliment Pharmacol Ther 41 (9): 807–20. doi:10.1111/apt.13155. PMID 25753138 Better now?). I hope that now you agree.

Also, I agree this change have you made (→‎Research: rv quotes/jargon & copyedit as WP:REFBLOAT, WP:NOTJOURNAL, WP:PEA for author names; rv ref to a study described as preliminary & weak - why include it?) but I'd like you to explain me why did you say "jargon & copyedit". Jargon? Copyedit??

Best regards. --BallenaBlanca (talk) 11:08, 15 December 2015 (UTC)

@Zefr: perhaps you didn't see my previous message... I'm waiting for you to explain me why did you say "jargon & coyedit". To make things easier, we will see the text you deleted:
(→‎Research: rv quotes/jargon & copyedit as WP:REFBLOAT, WP:NOTJOURNAL, WP:PEA for author names; rv ref to a study described as preliminary & weak - why include it?)

In a 2013 double-blind placebo-controlled trial (DBPC) by Biesiekierski et al. in a few patients with irritable bowel syndrome (IBS), the authors found no difference between gluten or placebo groups and the concept of NCGS as a syndrome was questioned. Nevertheless, this study had design errors and an incorrect selection of participants, which could have masked the true effect of gluten reintroduction.[1][2]

And let's take a look at the sources:
  1. ^ Aziz I, Hadjivassiliou M, Sanders DS (Sep 2015). "The spectrum of noncoeliac gluten sensitivity". Nat Rev Gastroenterol Hepatol (Review). 12 (9): 516–26. PMID 26122473. doi:10.1038/nrgastro.2015.107. In fact, the effects of gluten were questioned after it was demonstrated that individuals with self-reported NCGS already on a GFD further benefited when placed on a low FODMAP diet.37 Furthermore, the 37 participants in this study then underwent a DBPC crossover trial whereby they received high-dose gluten (16 g gluten per day), low-dose gluten (2 g gluten and 14 g whey protein per day) or control (16 g whey protein per day) for 1 week followed by a washout period of at least 2 weeks before switching to the next diet. The investigators found no specific or dose-dependent effect of gluten.37 However, recruitment for this study was through media advertisement and many of the individuals presenting with self-reported NCGS were still symptomatic while on their GFD, recording visual analogue scale ratings of up to 60; this finding might not be reflective of those who truly have NCGS. Also, the DBPC crossover trial showed a nocebo response among the three arms, which suggests an anticipatory effect of the crossover study design. (…) 37. Biesiekierski, J. R. et al. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology 145, 320–328 (2013). 
  2. ^ Elli L, Branchi F, Tomba C, Villalta D, Norsa L, Ferretti F, Roncoroni L, Bardella MT (Jun 2015). "Diagnosis of gluten related disorders: Celiac disease, wheat allergy and non-celiac gluten sensitivity". World J Gastroenterol (Review). 21 (23): 7110–9. PMC 4476872Freely accessible. PMID 26109797. doi:10.3748/wjg.v21.i23.7110. In a recent study by Biesiekierski et al[77] the concept of NCGS as a syndrome has been questioned. In that study, patients with self-reported NCGS on a GFD showed further improvement when placed on a low FODMAP diet and blinded gluten re-introduction led to no specific or dose-dependent effect. However, in those patients the reintroduction of both gluten and whey protein probably had a nocebo effect similar in all groups, which might have concealed the true effect of gluten/wheat re-introduction. (…) 77. Biesiekierski JR, Peters SL, Newnham ED, Rosella O, Muir JG, Gibson PR. "No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates." Gastroenterology. 2013;145:320–8.e1-320-8.e3. 
Where is a "copyvio" problem? My text is paraphrased. Where is "jergon"?
I added these two quotations, using the "quote parameter", that is a perfectly correct practice:
Template:Cite journal

Quote . quote: Relevant text quoted from the source. Displays enclosed in quotes. When supplied, the citation terminator (a period by default) is suppressed, so the quote needs to include terminating punctuation.

And I answer to your question "why include it?" Because this study had a great significance and controversy in the history of the NCGS, and it is necessary to show all views and subsequent revisions, although I agree that perhaps this is not the most appropriate section to include this paragraph.
I've taken citations because experience shows that there are many interested readers. In this way, they can get more information; one paper is not free access.
Best regards. --BallenaBlanca (talk) 16:13, 16 December 2015 (UTC)
BallenaBlanca: Although most editors would likely acknowledge you as a valued expert for this article as it exists now, you seem to be excessively pushing your point of view, WP:ADVOCACY and WP:SOAP. The article is already highly detailed and sourced for a topic that remains scientifically ill-defined, i.e., sufficient encyclopedic information exists in the article for the general lay user per WP:NOTGUIDE. It might be best for you to take a break from editing this article so intensively. Not all information needs to be presented as your extensive clinical detail, quotes and referencing intend to do; the article is not intended to be an expert clinical review -- please visit WP:NOT and WP:IMPARTIAL. Lastly, although I am not contesting your clinical content for the article, I am opposing all the detail you want to add, so there remains lack of WP:CONSENSUS which suggests we should allow time for other editors to work on the article. Applies also to other gluten-related articles you are aggressively editing. Kind regards --Zefr (talk) 16:51, 16 December 2015 (UTC)
I'm not clear on all that's going on here, so my apologies if I miss the key issues or repeat what's been said:
Reviewing WP:EXPERT may help.
"Because this study had a great significance and controversy in the history of the NCGS" Says who?
The problem appears to be that we are getting too close to the current state of the research rather than reporting on the medical and scientific consensus as it is. Wikipedia articles should be written primarily from secondary sources, and medical information especially so per WP:MEDRS. --Ronz (talk) 17:25, 16 December 2015 (UTC)

──────────────────────────────────────────────────────────────────────────────────────────────────── Zefr Well, then I gather that your mention to "copyvio" was a mistake, no such copyvio nor have documented. Please be more caution when choosing your words, you should not accuse copyvio unfounded.

I apologize if I'm misinterpreting, English is not my language, but in my opinion, you should be more careful with what you say about me.

  • Especially, I have interest in you read this conversation with @Jfdwolff:, who is an administrator and a member of WikiProject Medicine. I consulted with him on these issues:

User talk:Jfdwolff/Archive 37#Coeliac disease

"BallenaBlanca Around the time when the CD article became FA, another editor wrote lots of immunology content into other articles. It is still a hugely controversial area where some vociferously dispute the non-classical gluten-related conditions such as ataxia, whereas others accept these entities. JFW | T@lk 14:15, 2 November 2015 (UTC)
Yes, I know that there is a dispute in cientific community about the gluten-related symptoms/disorders. The scientific literature is growing and providing more and more evidence in favor of these entities. But our mission in Wikipedia is to write from a "neutral point of view (NPOV), which means representing fairly, proportionately, and, as far as possible, without bias, all of the significant views that have been published by reliable sources on a topic." Thus, if we reflect the controversy, I think there is no problem. It is necessary to give the reader all the positions so that he can make his own decisions.
Best regards. --BallenaBlanca (talk) 15:27, 2 November 2015 (UTC)
BallenaBlanca I agree. The extended gluten sensitivity conditions have extensive secondary sources in their support. JFW | T@lk 20:35, 3 November 2015 (UTC)"
  • My contributions are not limited to these issues, you can check: I have reverted vandalisms, deleting spam and copyvios, helped to block users and sockpuppets, etc.
  • The NCGS page reflects the current situation, all doubts and controversies; it is not partial, not a manual, there is not "copyvios" nor "jargon", nor reflects "my" point of view.

Ronz, don't worry. You are free to give your opinion. "The problem appears to be that we are getting too close to the current state of the research rather than reporting on the medical and scientific consensus as it is. Wikipedia articles should be written primarily from secondary sources, and medical information especially so per WP:MEDRS." I have already answered most of this . And I add that I didn't used any primary source, any not-WP:MEDRS. All sources are updated PubMed indexed review papers (all of them peer-reviewed journals), and with all point of views and controversies.

What you suggest is already made, twice:

WikiProject Medicine/Archive 75#Gluten-free diets and autism (already archived) and Wikipedia talk:WikiProject Medicine#Non-celiac gluten sensitivity (open).

Best regards. --BallenaBlanca (talk) 03:59, 17 December 2015 (UTC)

FYI: I've already explained elsewhere to this editor that "copyedit" and "copyvio" are not the same thing. – Smyth\talk 17:21, 18 December 2015 (UTC)
Dear Smyth and Zefr. Oops! Blush.png I apologize for having confused the meaning of copyedit...
Smyth, thank you very much for your explanations and kindness.
Best regards. --BallenaBlanca (talk) 19:02, 18 December 2015 (UTC)

Controversy[edit]

It should be sufficient to say there is still some controversy rather than reverting entries. See discussion at User talk:Ronz. I will edit this a little. Jrfw51 (talk) 18:10, 7 April 2016 (UTC)

You keep watering down the content and obfuscating the fact this view comes from the NHS which is ... kind of important. Alexbrn (talk) 18:27, 7 April 2016 (UTC)
This comes from one part of the NHS information process -- dated when? These undergo review too. Sometimes they may not have considered all the evidence ... But I must be careful not to bring MY POV to WP:MEDRS. Jrfw51 (talk) 18:40, 7 April 2016 (UTC)
It was last reviewed in Feb 2016. It is a highly respected site: just the kind Wikipedia likes to mirror (or at the very least, include the view of!) Alexbrn (talk) 18:44, 7 April 2016 (UTC)
Yes OK. Mirror it. And cite it with the weight you think it deserves. Please bring out the controversy though [5] Jrfw51 (talk) 19:14, 7 April 2016 (UTC)
Thanks, both of you. --Ronz (talk) 19:34, 7 April 2016 (UTC)

──────────────────────────────────────────────────────────────────────────────────────────────────── To continue with the controversial aspect of this: the NHS Choice site also has this page Should you cut out bread to stop bloating?. This discusses Wheat Sensitivity, together with coeliac disease and wheat allergy, and talks about going onto a wheat-free diet for a trial. The views of one expert are quoted and the relationship to FODMAPs is discussed. This is clearly related to the current entry here. Would Alexbrn and Ronz care to look at this and let's discuss how we can rewrite this aspect without instant reversion! Jrfw51 (talk) 13:11, 8 April 2016 (UTC)

Looks more suitable for the FODMAP article, but the main message ("A specific type of wheat-free diet may help certain people with wheat sensitivity") is already one covered there. Alexbrn (talk) 13:35, 8 April 2016 (UTC)
(Add} and trying to twist it round and force one page to "however" another[6] one looks like POV-pushing. Alexbrn (talk) 16:26, 8 April 2016 (UTC)
This is getting very difficult to balance the controversy as Alexbrn is pushing his POV. There are different approaches in his site of choice and there is no reason to keep only one. I kept both for WP:BALANCE.Jrfw51 (talk) 17:02, 8 April 2016 (UTC)
NHS choices does not equate "wheat sensitivity" with gluten. You are inventing a dispute and bombing the lede with novel content not supported by the sources, based on your own views. You are also edit warring. Be aware of WP:EW and that edit warring can lead to sanctions. Alexbrn (talk) 17:26, 8 April 2016 (UTC)
I agree with Jrfw51. No need to add more on the leade, there already is "and some authors still question it".
And there are clear contradictions in NHS web. If we mention one article, we must mention the other one, per WP:NPOV
I wonder to what extent is a verifiable source? Nobody signs the articles. In my previous experience in Wikipedia projects, it is an important point against verifiability.
Best regards. --BallenaBlanca (talk) 17:39, 8 April 2016 (UTC)
NHS choices does not equate "wheat sensitivity" with gluten. Yes, both terms are equivalent. NHS is in line with other authors: " It has been suggested that "non-celiac wheat sensitivity" is a more appropriate term, without forgetting that other gluten-containing cereals are implicated in the development of symptoms.(11)(12)" (because of "There is evidence that not only gliadin (main cytotoxic antigen of gluten), but also other proteins present in gluten and gluten-containing cereals (wheat, rye, barley, and their derivatives) may have a role in the development of symptoms.(3) FODMAPs that are present in gluten-containing grains have recently been identified as a possible cause of gastrointestinal symptoms in NCGS patients.(3)(8)(9)") But again, NHS information is very poor and not adjusted to current knowledge. Best regards. --BallenaBlanca (talk) 17:51, 8 April 2016 (UTC)
Thank you BallenaBlanca. You and I are trying to add content regarding the controversy regarding gluten, wheat and FODMAPs which is an everyday issue to our patients. Your point about the genesis and verifiability of NHS Choice articles is very true! Jrfw51 (talk) 18:00, 8 April 2016 (UTC)
Thanks to you, Jrfw51! Yes, we must be neutral, regardless of our opinions, and reflect information from all points of view.
About NHS source, they are only opinion articles, without references and unsigned. They doesn't match with WP:MEDRS. I propose removing them.
Best regards. --BallenaBlanca (talk) 18:09, 8 April 2016 (UTC)

──────────────────────────────────────────────────────────────────────────────────────────────────── Alexbrn, BallenaBlanca and others. I went back to look at the controversial statement on the NHS Choices site regarding the benefits and harm of a gluten-free diet [7] (ref 30). This has now been changed to reflect a view that is more neutral, consistent with my reading of other sources (although the revision date has not changed!). I propose the two sentences quoting ref 30 and 31 are now deleted and we go straight from the first sentence to the next paragraph. Jrfw51 (talk) 21:12, 8 May 2016 (UTC)

Hi, Jrfw51. You are right, now NHS Cohices is more adjusted to current knowledge. I agree with your proposal of delete these two sentences, it is obvious. Best regards. --BallenaBlanca (talk) 11:01, 9 May 2016 (UTC)
The NHS page seems irrelevant to NCGS now, and shoudn't be cited here. Alexbrn (talk) 11:21, 9 May 2016 (UTC)

Reference validation[edit]

BallenaBlanca Whilst you are clarifying which references are reviews and are good sources by WP:MEDRS, you might like to merge 15 and 31 which are duplicated. Thanks for putting so much effort into this page. Jrfw51 (talk) 21:41, 7 April 2016 (UTC)

 Done --BallenaBlanca (talk) 22:06, 7 April 2016 (UTC)

Too definitive[edit]

This article expresses far too much definitiveness about this ...condition and not nearly enough description of the hype in the popular media that clouds the science.

  • The skepticism expressed in PMID 26438584 (not by Fasano or his circle) is absent from this article, although it is actually cited 4 times. That review says "However, today NCGS is typically a self diagnosis or a diagnosis made by alternative health practitioners, with patients reporting both gastrointestinal and extra-intestinal symptoms. After gluten exposure those with NCGS report more symptoms than those with celiac disease. People who avoid gluten rarely have celiac disease excluded before adopting a gluten-free diet, and when evaluated alternative diagnoses such as fructose intolerance or small bowel bacterial overgrowth may be identified."
  • PMID 26690475 says "While the number of publications on NCGS is increasing, the available literature on NCGS suffers from significant methodological flaws, mainly because of lack of validated diagnostic criteria for NCGS and use of non-validated outcome measures..... Nevertheless, considerable debate about NCGS has recently surfaced on the Internet, with a sharp increase in forums, patients and patient groups, manufacturers, and physicians advocating a gluten-free diet. At present, the ratio between Google citations to PubMed citations for NCGS is 500:1, suggesting an increase of interest in NCGS by the general public. This clamor has now moved from the Internet to the popular press, where gluten has been named “the new diet villain”. Furthermore, a gluten-free diet has become the latest diet craze and is advocated and followed by many celebrities. There are general estimates that 10%–20% of people in USA and Australia are consuming gluten-free foods. On the other hand, there is another school of thought that suggests that NCGS is largely imaginary and has been overestimated by patients and gluten-free food industry. In summary, while there is a general agreement that NCGS does exist and its symptoms improve with the gluten-free diet for some patients. However, the detection of NCGS in these cases remains highly presumptive due to lack of a reliable diagnostic test." (that said, this is an MDPI journal and i would use this only for the "society and culture" section)
  • PMID 26097727 says "Thirdly, the concept of NCGS has emerged. In the public, an increasing percentage of otherwise-healthy individuals in Europe, the US, and Australasia have adopted a gluten-free diet as part of their lifestyle, suggesting—but in no way proving—that NCGS is a real entity....Despite the popular interest in gluten and gluten-related disorders, studies of the biological mechanisms to support NCGS are scarce...." Borrowing a technique from the food allergy field, it advocates that double-blind placebo-controlled food challenges be adopted as the gold standard diagnostic.
  • PMID 26060112 recommends the same diagnostic approach.

- Jytdog (talk) 20:21, 8 April 2016 (UTC)

Yes those are good quotations from good sources. Lacking objective biomarkers means patients' subjective responses so often are involved and double-blind placebo-controlled challenges (with gliadin) are lacking. There is a little (primary) data at the interface with immune-mediated coeliac disease though in DQ2/8. Please add as you see fit to adjust the balance -- perhaps in Society and Culture? Jrfw51 (talk) 21:26, 8 April 2016 (UTC)
I agree. Only one question: MDPI journals are o are not WP:MEDRS? Best regards. --BallenaBlanca (talk) 21:38, 8 April 2016 (UTC)
Thanks both of you. I hesitate to get involved with actual content while the larger issues here are being addressed but will circle back after the thread at WT:MED is done. About MDPI, there was a big thread at RSN where the community decided that journals on Beall's list are not RS so they are not MEDRS either. Please see MDPI#Inclusion_in_Beall.27s_list. It was on Beall's list and then off it and its status is iffy. I steer clear of MDPI journals as I want to always use the highest quality sources I can for health stuff, especially. Jytdog (talk) 06:36, 9 April 2016 (UTC)
Thank you very much for your work improving the page, Jrfw51. And thank you very much for your explanation, Jytdog. If I understood, MDP journals are not currently on Beall's list. Nutrients have an impact factor of 3.27 and, for example, two references from Nutrients have been used in this article PMID 26438584 (Oct 2015), published on The BMJ(current impact factor: 17.45) IMO, we can use PMID 26690475, not only on society and culture, it seems that currently meet WP:MEDRS. What do you think?
Best regards. --BallenaBlanca (talk) 10:28, 9 April 2016 (UTC)
You'll use your best judgement. The Impact factor on the Nutrients helps argue for it, for sure, but as I said I wouldn't use any MDPI journal for any health content, especially not if that reference was the only citation. I am a bit unhappy that this is my stance on MDPI because i found PMID 26690475 to take a responsible, non-woo stance on the gluten stuff. But just because i like what it says, doesn't mean i should bend my standards to elevate it. Jytdog (talk) 10:37, 9 April 2016 (UTC)

────────────────────────────────────────────────────────────────────────────────────────────────────Yes, Nutrients IF is now >3 and this is a good article IMO, so I have left it in a couple of places. I have now started a Society and Culture section with popular references to the debate (including Newsweek, Scientific American and Mail online!) where I hope we can add more. I have done a fair bit of copy-editing too but will now stop for a while. Thanks jytdog and BallenaBlanca for adding well-sourced balanced content. Jrfw51 (talk) 11:07, 9 April 2016 (UTC)

I see three Nutrients citations. The first, Catassi et al 2013 appears to be by the highest quality of the three. Everyone agree? Looking it over, I think it needs review by more editors. I've very uncomfortable with the quality of this reference and how it is being used in the article - the very problems discussed at WT:MED --Ronz (talk) 16:20, 9 April 2016 (UTC)
I have cut the third Nutrients review and trimmed a couple of other statements relating to celiac disease in children which are not needed here. We actually have many reviews in different journals, all reviewing the same primary papers and saying pretty much the same thing. Jrfw51 (talk) 17:10, 9 April 2016 (UTC)
Good work, Jrfw51! I want to comment on this, to see what you think: Recommendations may resemble those for celiac disease, for the diet to be strict and maintained, with no transgression,[20] although other sources call only for reduction.[31] The source [31] (NHS) talks about people with only digestive symptoms, ie, limited to a part of patients. The recommendations supported by the other source[20] are general and also include patients with extra-intestinal symptoms. Possibly it would be good adding a clarification explaining that recommendations of only reduction are for people who have only digestive symptoms. What do you think? Best regards. --BallenaBlanca (talk) 11:47, 10 April 2016 (UTC)
Thanks. I don't think it needs to change, we have both points of view and balance. See also in Molina-Infante et al. (ref 14) However, it [gluten-free diet] has shown variable efficacy for other gluten-related conditions (NCGS, dermatitis herpetiformis and gluten-sensitive ataxia) or IBS, questioning the need for strict adherence. I think this is a good current Systematic Review. Jrfw51 (talk) 12:48, 10 April 2016 (UTC)
You are right, I agree, now we have both points of view. We can let the text as it is now.
Nevertheless, the conclusions of Molina-Infante about ataxia and dermatitis herpetiformis are surprising and have some drawbacks, because they do not consider certain very important aspects. Actually, we are in a time when there is much confusion because of lack properly assess certain parameters of the studies, as monitoring the strictness adherence to gluten-free diet, to draw correct conclusions. Moreover, ethical considerations are an added problem to perform double-blind, placebo-controlled challenges in certain cases (as gluten ataxia, autism, etc.) in which the damages are (or probably are) irreversible, so it will be difficult to have conclusive studies in the future. In addition, the reference that supports this sentence (Celiac disease, wheat allergy, and gluten sensitivity: when gluten free is not a fad. PMID 22237879) says (we must take into consideration that the feature of GFD is the strict gluten withdrawal):
Often, in wheat allergy and gluten sensitivity, only wheat or gluten restriction is needed, and dietary supplements and medical screens for nutrition deficiencies (ie, anemia, vitamin levels, bone density) are not warranted. (this may match with the sentence about NCGS, but is not clear what means "restriction" in this context. Strict, non strict...? NOTE: wheat allergy patients usually do not need to restrict rye, barley, and oats)
Diagnosis of DH is made with skin biopsy, sent frozen for special granular IgA stains in the dermal papillae. If DH is confirmed via skin biopsy, the patient does not require endoscopy for small bowel biopsy but does require a GFD. Dapsone, an anti-inflammatory antibiotic, is the drug of choice to alleviate the acute pruritus, although other medications are available. Strict adherence to a GFD is currently recommended to prevent flares and complications, such as vitiligo, alopecia areata, sarcoidosis, autoimmune thyroid disease, type I diabetes, and systemic lupus erythematosis. Some patients are also sensitive to products containing latex and iodine.31,32
GFD is the mainstay of treatment for gluten ataxia, although 1 uncontrolled trial reported improvement in 4 patients after intravenous immunoglobulin.38
Conclusions: The GFD, although safe and effective, is currently only indicated for specific medical conditions:
1. Celiac disease? Yes, the GFD is the only validated treatment for this condition.
2. Wheat allergy? Yes, the GFD is indicated, but these patients usually do not need to restrict rye, barley, and oats unless they exhibit additional food allergies or sensitivities.
3. Gluten sensitivity? Yes, the GFD is indicated, particularly in the cases of DH and gluten ataxia. However, it is hard to define this condition, particularly if there are only vague gastrointestinal or neurologic symptoms present in the patient. More research is needed in this area.
4. IBS? Yes, the GFD may improve symptoms in diarrhea-predominant IBS. However, the healthcare practitioner must first rule out CD because the symptoms of IBS and CD are similar.
5. Autism? The GFD may or may not have benefits in subsets of patients with the autistic spectrum disorder. The GFD has the advantages of being proven safe and nontoxic without definitive nutrition deficiencies. However, the casein-free diet may require supplementation of protein, calcium, and other vitamins and minerals. In this population, one needs to account for patient preferences for foods and oral feeding aversions to certain textures and tastes, as well as quality-of-life issues. More research is needed in this area.
6. The general public? No, although the human race does not appear to be evolved to digest glutens well, and these proteins are highly immunologically reactive, no current data suggest that that general population should maintain a gluten-free lifestyle in the absence of the above conditions. More research is needed in this area as well.
Two interesting quotes about ataxia and the lack of monitoring the strictness adherence to gluten-free diet in current studies and ethical considerations to perform double-blind placebo-controlled challenges:
Even in the absence of coeliac disease, gluten causes neurological manifestations in the form of ataxia, neuropathy and encephalopathy.57,58 Gluten ataxia is the most common neurological disorder to have been studied (Figure 1).58 (...) The clinical response to a GFD depends on the duration of ataxia as prolonged gluten exposure results in irreversible loss of Purkinje cells with atrophy of the cerebellum. Some case reports of patients with established coeliac disease who then developed neurological dysfunction described improvement of the neurological problems with adherence to GFD whilst others did not. None of these reports documented the strictness of adherence to GFD by demonstrating serological elimination of coeliac-disease-specific antibodies, something that is proving to be essential if patients with neurological manifestations are to improve. Importantly, the only study that included patients with NCGS demonstrated that a GFD improves the ataxia (Figure 1b).60 Similar observations have been made in gluten-induced peripheral neuropathy.[1]
Ataxia (with and without myoclonus) and neuropathy were the commonest manifestations.
Neurologic manifestations were usually reported in the context of established CD and almost always attributed to nutritional deficiencies.
In those reports where the effect of the dietary restriction was reported, the results were mixed. None of these reports, however, documented any attempts to monitor adherence to the diet with repeat serologic testing.
There is emerging evidence that MR spectroscopy is often abnormal in patients with newly diagnosed CD with minimal or no neurologic complaints and that such abnormalities improve with the introduction of a gluten-free diet. The clinical improvement manifests after 1 year on the diet but continues for at least 2 years. The response to treatment with a gluten-free diet depends on the duration of the ataxia prior to the diagnosis of GRD. Loss of Purkinje cells in the cerebellum, the end result of prolonged gluten exposure in patients with GA, is irreversible, and prompt treatment is more likely to result in improvement or stabilization of the ataxia. Whilst the benefits of a gluten-free diet in the treatment of patients with CD and DH [dermatitis herpetiformis] have long been established, there are very few studies, mainly case reports, of the effect of a gluten-free diet on the neurologic manifestations. Most of these reports primarily concern patients with established CD who then develop neurologic symptoms (Beversdorf et al., 1996; Hahn et al., 1998; Pellecchia et al., 1999). These studies suggest variable but overall favorable responsiveness to a gluten-free diet. A small, uncontrolled study looked at the use of intravenous immunoglobulins in the treatment of four patients with GAwithout enteropathy (B€urk et al., 2001b; Sander et al., 2003). All patients improved. In all of these reports, strict adherence to the gluten-free diet was assumed and no serologic evidence was provided. The best marker of strict adherence to a gluten-free diet is serologic evidence of elimination of circulating GRD-related antibodies. Only one systematic study of the effect of a gluten-free diet on a cohort of patients presenting with ataxia, with or without an enteropathy, has been published (Hadjivassiliou et al., 2003b). This study also reported serologic evidence of elimination of the antigliadin antibodies as a confirmation of strict adherence to the diet. (...) There are no published randomized, placebocontrolled studies on the subject, perhaps reflecting the difficulties associated with such a study when the intervention is dietary elimination of gluten and the ethical considerations of randomizing patients with GA who have enteropathy. The current recommendation is that patients presenting with progressive cerebellar ataxia should be screened for gluten sensitivity using antigliadin IgG and IgA, anti-TG2 antibodies and if available anti-TG6 antibodies. Patients positive for any of these antibodies with no alternative cause for their ataxia should be offered a strict gluten-free diet with regular followup to ensure that the antibodies are eliminated (usually takes 6–12 months). Stabilization or even improvement of the ataxia at 1 year would be a strong indicator that the patient suffers from gluten ataxia. The commonest reason for lack of response is lack of compliance with the diet. If patients on strict gluten-free diet continue to progress, with or without elimination of antibodies, the use of immunosuppressive medication (mycophenolate) should be considered. Such cases are rare. (...) To fully understand the immunologic insults resulting from gluten ingestion, the emphasis should perhaps shift toward the study of extraintestinal manifestations. In addition there is a need for the early identification of those patients that are specifically at risk of irreversible complications (e.g., gluten ataxia). To that effect, new diagnostic tools are now becoming available (e.g., antibodies against TG6) which may make a more reliable identification of those patients with neurologic manifestations a reality. (...)
the diagnosis of those patients presenting purely with extraintestinal manifestations may be more difficult. The only way that this can be improved upon is by changing the perception of physicians that glutenrelated diseases are solely diseases of the gut.[2]
Best regards. --BallenaBlanca (talk) 09:28, 11 April 2016 (UTC)
Jrfw51, I will apply your changes here to non-coeliac gluten-sensitivity section of gluten free diet page, to reflect the controversies and remove the template. Let me know if you agree and review what you consider. Best regards. --BallenaBlanca (talk) 20:57, 12 April 2016 (UTC)

──────────────────────────────────────────────────────────────────────────────────────────────────── BallenaBlanca, I have had a quick look at the changes from this main NCGS article that you have now applied to gluten-free diet -- these seem to be what was needed there too. Thank you! I will not have time for any further refinement to these for a few days. I hope that together we have brought these articles to a more balanced view without undue weight and this will be what the community wants. Best regards Jrfw51 (talk) 07:45, 13 April 2016 (UTC)

Thank you very much, Jrfw51! I look forward to continue working with you. I am very comfortable with our work together. One hug! --BallenaBlanca (talk) 09:22, 13 April 2016 (UTC)


Wording comes across as deliberately ambiguous, bordering on outright misleading[edit]

This article is not very well written from the outset, frankly. Referring to this (now almost entirely debunked) claimed condition as a "a clinical entity" comes across as weasel wording. The word "clinical" produces just enough air of authenticity to make it seem like a proven condition, whereas at this point in time the only weight behind this supposed "disorder" is the testimony of people suffering from minor occasional bowel discomfort. (The only major supporting study for this "condition" has been soundly and roundly debunked, see above.) Further, describing it as a "controversial syndrome" is another example of this: whilst "Syndrome" can refer to a set of symptoms within itself, it most commonly refers to symptoms pertaining to an established disease. NCGS has NOT been proven to conclusively exist, the only study that supported it on a scientific level has been debunked in a second study that featured better controls, by the admission of its own author, so that, plus ridiculously ambiguous phrases such as "NCGS is the most common syndrome of gluten-related disorders" combine to create the impression that NCGS absolutely does exist, but is simply "controversial." ALL of the "evidence" that this condition exists is testimony, and again, the only major study that backed up this claim has been debunekd by its own authors. It has as much evidence backing it as https://en.wikipedia.org/wiki/Morgellons, frankly. That is not exaggeration. Testimony and nothing else.

I admit to being biased as a Coeliac who can't find gluten free food in stock anywhere due to people who eat way too many poorly absorbed carbs buying it all up, but this article is the extreme opposite end of that spectrum, displaying immense bias throughout in its wording. I'm completely new to wikipedia and I'm not the most experienced of copywriters, so I won't wade in and start making edits, but at this point this "disorder" is an unsubstantiated claim that has no real evidence in favour of it, and plenty against.

Would we be calling vaccine induced autism a "syndrome" because of one study with no real controls? Because that's the essential (rather desperate) argument I see above. If youre going to argue that the article is fine as is because of it being recognised in 2012, only to ignore all conclusions from the scientific community since then, you're not just being biased, you're being incredibly selective. — Preceding unsigned comment added by Matthewhowcroft (talkcontribs) 09:05, 24 April 2016 (UTC)

Of course it exists, the question is what causes it and what should we call it[edit]

I have been a Wiki editor for many years and would not normally interfere in a Talk Page like this, but in this case (after reading Matthew Howcroft’s contribution) I have decided to. I am a Theoretical Physicist, based at the University of London and am well versed in Scientific Method, probably better so than many medical professionals. I have also suffered from NCGS since the early 1960’s. It has been a huge factor in my life, and inevitably a subject of intense study for over fifty years, with myself as subject. I will not here go into how it has affected my life, but it has done so greatly. “Occasional bowel discomfort” is insulting.

In the Seventies we used to call it food intolerance. In many cases cereal intolerance would be a better name, but most people are unaffected by rice, and many by Durum wheat. A better name might be “cereals-that-CONTAIN-gluten-intolerance”, so that NCGS is not a bad moniker, although not a particularly good one either, as it is not clear that gluten itself is the cause.

Of course, the condition exists. It is a syndrome – because we do not know what causes it. This is what we mean by a clinical entity. Yes, “clinical entity” is weasel wording, but it is scientifically justifiable weasel wording. The wording of the Copenhagen Interpretation (ie, the orthodox interpretation) of Quantum Mechanics is in terms of weasel wording. That was Bohr’s whole point. Weasel wording is entirely scientifically appropriate here. Read about Logical Positivism.

Of course, the condition exists. The real questions are, what shall we call it, and what causes it. To say that it is “debunked” is about the same as me saying that coeliac disease doesn’t exist, it is simply a form of NCGS, and I wish all those coeliacs would stop buying up the gluten free food so that I could get some. This is an OK early stage article, under development, about a poorly understood subject, which makes life miserable for millions. Keithbowden (talk) 11:57, 29 October 2016 (UTC)

Two points here, Keithbowden:
First, I assume you adhere to a non-gluten diet, right? If you've done so, it is actually impossible to tell whether or not you have coeliac disease. Antibody tests are frequently negative, and the only sure-fire way to tell whether you have coeliac disease is through biopsy of the small intestine, which shows inflammation only if you've tried to digest gluten. That means you may very well have unverified coeliac disease, which is a known complication of a gluten-free diet, and why it is not recommended unless you actually have the disease (it hides the disease and then your stuck with NCGS instead of what would be a proper diagnosis and the proper benefits - in some countries you can get deducted food prices). Cutting gluten from your diet may have a strong placebo effect that makes you believe you're feeling better, which in turn makes you feel better. The placebo effect is actually very profound and can not be ignored. KB: Of course I was eating gluten when I had various coeliac tests. The rest is obvious. Did you not notice, I said fifty years? But this is not a forum about my health.
Second point: Just because a disease is contested does not mean that it doesn't exist. The scientific community may very well be wrong about this, but we as Wikipedia cannot engage in trying to tell the future (WP:CRYSTALBALL/WP:FLAT). If you have criticism of the way we treat the disease, bring some quality sources to the fray. KB: I don't criticise it. My point is that I am not all that interested in your concept of a "disease" (lack of ease?) I am happy just to treat the syndrome until you guys get somewhere with the mechanism. But this is not the place for that fray.
Best, Carl Fredrik 💌

I think that it is clear that I profoundly disagree with Carl Frederik here. If you are fairly sure that gluten-containing-foods are causing you a problem DON'T EAT THEM. If you are going to have a Coeliac test then go back on a normal diet for as long as you can cope with it before the test. Knowing that you have Coeliac disease rather than NCGS has very little advantage anyway. Those are the main conclusions of fifty years of research into my own condition (by me and a series of medical consultants) and into that of other sufferers that I know.

However all this does not detract from the fact that I DO think that research into this (in many cases) profoundly disabling condition is important. But treating it as a clinical syndrome is just as important as looking for underlying mechanisms (which hasn't really got us anywhere in all this time). Belittling the problem by Coeliac sufferers is not helpful, to say the least. Keithbowden (talk) 18:28, 2 November 2016 (UTC)

Guy, is this MEANT to be insulting? If you think that ** I ** am suffering from confirmation bias then you could please point out where, otherwise please write in complete sentences so that your meaning is clear. Keithbowden (talk) 13:14, 4 November 2016 (UTC)

I'm not at all convinced NCGS is a thing, but it is very likely that people might have autoimmune or other responses to related proteins which are, coincidentally, absent or much reduced in a GF diet.

Is a syndrome (in the sense of a collection of symptoms common to a large group of people) not a "thing"? Your wording is extremely unhelpful. The latter half of your sentence is certainly true. The rest of this is more of a response to Carl, rather than me, in which case it is in the wrong place, which is why I reverted it. Keithbowden (talk) 13:14, 4 November 2016 (UTC)
Morgellons is not a thing, chronic Lyme is not a thing, and I am not convinced NCGS is a thing. The issue is not the symptoms, which are likely real regardless of whether they are psychosomatic or not, the issue is the framing of those symptoms in terms of a cause which is not supported by robust evidence. Guy (Help!) 13:27, 4 November 2016 (UTC)
As far as I can see, all you are doing by this first sentence is giving (examples of) your own personal definition of what is a "thing". As I said, this is not helpful (and not appropriate). And you are wrong: The issue of this section (which I started) is NOT "the framing of those symptoms in terms of a cause which is not supported by robust evidence", but of people demeaning the sufferers of these symptoms by, for instance, reserving the use of words like "condition", "exist" or even "thing" for conditions with a known cause. Suffering the symptoms and not knowing the cause is just as much a condition (or a thing) as suffering the symptoms and knowing the cause. Sets of symptoms exist just as much as diseases with known causes do. And indeed, knowing the cause in this case helps very little. Being told that something is, or may be, all in the mind is demeaning enough to sufferers without you (plural) redefining the English language in this way. It IS positively insulting.Keithbowden (talk) 16:22, 4 November 2016 (UTC)

Carl's almost right about coeliac, but these days a positive tTGA test is pretty much diagnostic so children are often not subjected to jejeunal biopsy because it is (trust me on this) very unpleasant. Bear in mind also that coeliac is reckoned to be seriously under-diagnosed. Most people who identify as gluten intolerant, in the absence of coeliac, are self-diagnosed with the help of either a quack or Dr. Google (I probably don't need to point out how fraught with problems that is) but some of them may actually have coeliac. In fact it would be odd if they didn't, given its apparent prevalence. Final point: if anyone promotes wheat belly, they are an idiot and you should ignore them. That's a handy litmus test for you :) Guy (Help!) 09:16, 3 November 2016 (UTC)


I know this isn't really the place, but just to be helpful to other readers who suffer from or research this syndrome, it might be worth noting that I am also severely allergic to pectin, not the kind you get in apples, but the processed kind they put in jam. I don't know if it is chemically different or just a much higher concentration. Other products used as thickening agents sometimes bother me. Keithbowden (talk) 18:40, 2 November 2016 (UTC)

You're right, this is not the place. There's no good evidence NCGS is actually related to gluten, so personal speculation on relationship to other substances is inappropriate. Guy (Help!) 13:30, 4 November 2016 (UTC)
Where did I do that? Perhaps we speak a different language.
NCGS (the syndrome) is related to gluten in the following sense: A large number of people report that foods containing gluten make them feel ill. This syndrome is called NCGS. I think we should resolve this offline. Email me.Keithbowden (talk) 16:07, 4 November 2016 (UTC)

I am adding this paragraph because I am truly perplexed by people's attitudes here. Unless I am reading something wrongly this article is about the SYNDROME NCGS. The article is NOT specifically about the question of what causes it. This is made clear in the first sentence "Non-celiac gluten sensitivity (NCGS) or gluten sensitivity is a clinical entity induced by the ingestion of gluten leading to intestinal and/or extraintestinal symptoms that resolve once the gluten-containing foodstuff is eliminated from the diet, and when celiac disease and wheat allergy have been ruled out." The article is about the clinical entity, the syndrome, the set of symptoms. Is that not correct? Keithbowden (talk) 16:37, 4 November 2016 (UTC)

Calling it a syndrome legitimizes it beyond what the sources say. None of the sources state it is a syndrome, simply a set of symptoms that may or may not correlate with gluten. Carl Fredrik 💌 📧 16:54, 4 November 2016 (UTC)
I think you are using a different definition to me. Syndrome "a group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms", Oxford English Dictionary. I made it clear that I was using the first definition. This clearly does not overlegitimise it.Keithbowden (talk) 17:08, 4 November 2016 (UTC)
Firstly, I'm not saying it isn't a syndrome, just that none of our sources say it is — and Wikipedia lives and dies by its sources. Secondly, there seems to be no indication of any consistency, more that NCGS is used to explain utterly normal physiology. Carl Fredrik 💌 📧 17:13, 4 November 2016 (UTC)
And, can you please stop breaking my signature!? Carl Fredrik 💌 📧 17:14, 4 November 2016 (UTC)
I was making the point that it is a syndrome by definition. Logically it is either 1. a set of symptoms or it is 2. a condition characterised by set of symptoms. This precisely is the dictionary definition therefore it is a syndrome. It is a syndrome because it is a set of symptoms. Is there any sense in which it isn't a set of symptoms? And this is precisely what the article says it is about. A clinical entity - ie a syndrome. I have every belief that this is precisely what the author intended. It is quite irrelevant that you do not have a source other than the OED. It is TAUTOLOGICALLY true. Keithbowden (talk) 19:04, 4 November 2016 (UTC)
On the other hand I take your point about "which consistently [or at least typically?] occur together". I did not realise that there was an issue here. The article itself, by its very nature, assumes this. If this is the issue then the article ITSELF ought to address it, by giving a typical set of symptoms (then we would have to have a source). And indeed it does (although I notice that it omits rhinitis).Keithbowden (talk) 19:12, 4 November 2016 (UTC)
Hmmm, Ok. Let me define a thing for Guy. A "thing" is something with a consistent, or at least typical, set of symptoms. That is an excellent definition of a "thing" which could apply on a very general level (maybe in Computer Science, certainly in Physics), and I think it may be what Guy was getting at, but I don't think he handled it very well. If NCGS is a "thing", as the existence of this article implies that it is, then my guess is that this is what the various conferences in 2012(?) may have concluded, ie that there is a consistent, or typical, set of symptoms of NCGS. If this is the case then it should be easy enough to check. Otherwise it ISN'T a "thing", at least by this definition. I notice that both Guy and Matthew are Coeliac's themselves, hence perhaps the strong feelings. However, consider that people who suffer from NCGS may have feelings too, and respect them also appropriately.Keithbowden (talk) 20:34, 4 November 2016 (UTC)
Finally I will just mention that when I made this definition of "thing", I had in mind, not just the definition of syndrome, but also Einstein's definition of an "element of reality" (a "thing"), as something which can be consistently predicted (a consistent set of symptoms). Actually this is a sufficient condition, but not a necessary one. A necessary one would be something that can be predicted with statistical significance (a typical set of symptoms). 92.232.143.186 (talk) 13:11, 10 November 2016 (UTC).

References

  1. ^ Aziz I, Hadjivassiliou M, Sanders DS (Sep 2015). "The spectrum of noncoeliac gluten sensitivity". Nat Rev Gastroenterol Hepatol (Review). 12 (9): 516–26. PMID 26122473. doi:10.1038/nrgastro.2015.107. 
  2. ^ Hadjivassiliou M, Duker AP, Sanders DS. "Gluten-related neurologic dysfunction". Handb Clin Neurol (Review). 120: 607–19. doi:10.1016/B978-0-7020-4087-0.00041-3.