Research - NCGS or FODMAPS (objection, your honor)

An old mentor of mine once said that the measure of a person is when they say no.  That's when you see the real person.  Agreeableness is fun and it's friendly, but sometimes we have to create definition in our lives by disagreeing with a few things.  I disagree that NCGS (non celiac gluten sensitivity) is only about FODMAPS (short carbohydrates that usually show up as "fiber" on food labels, but can trigger IBS).  From my experience of scientists, they love debate, so let's get to it, in the proper spirit of discourse.

The concept of FODMAPS was a godsend when I first discovered it, and it took a long time to memorize the lists of foods that were safe for me.  However, problems continued until I finally gave up all gluten containing foods, plus cross-contaminated foods.  There is an inherent problem with trying to separate FODMAP sensitivity from gluten sensitivity:  Wheat, barley and rye are all high in FODMAPs.  I'm not the only one talking about this.

Back when the FODMAP diet was just a booklet you could buy from Monash University, I read some of the early science that went into the development of the Low-FODMAP diet. They were originally using a slice of wheat bread as a material in their tests.  Then they realized the crossover with Celiac and abandoned that.So this connection between gluten illness and FODMAPS has existed for as long as the diet has.  Therefore, I'm surprised that they are attempting to claim that there is no gluten sensitivity at all, that  it's all FODMAPS and that there is any consensus on this subject.

Non-coeliac gluten or wheat sensitivity: emerging disease or misdiagnosis?
https://www.ncbi.nlm.nih.gov/pubmed/28987135
 Med J Aust. 2017 Aug 4;207(5):211-215.
Potter M1, Walker MM2, Talley NJ2.
Author information
University of Newcastle, Newcastle, NSW


Excerpt from Abstract: 
Of people self-reporting gluten or wheat sensitivity, only a small proportion (16%) will have reproducible symptoms after a blinded gluten challenge of gluten versus placebo in a crossover dietary trial and fulfil the current consensus criteria for a diagnosis of NCG/WS. A wide range of symptoms are associated with NCG/WS, including gastrointestinal, neurological, psychiatric, rheumatological and dermatological complaints. The pathogenesis of NCG/WS is not well understood, but the innate immune system has been implicated, and there is overlap with coeliac disease and the functional gastrointestinal disorders (irritable bowel syndrome and functional dyspepsia). Identification of NCG/WS is important as gluten-free diets carry risks, are socially restricting and are costlier than regular diets.
First, it's Australia, they love their FODMAP discovery (who doesn't? it is a wonderful discovery), but it's not true that all the world is a nail if you're holding a hammer, and I'm surprised they would claim such. 

Second, wait wait wait...  there's a consensus?  Among scientists?  But this is an emerging medical issue.  Painting it as something that has (scientific) consensus is inherently disingenuous. What they mean is that the public health department (a committee) decided what was permissible for doctors to diagnose and how it was permissible to do so.  That was based on preliminary science and a diagnosis would only happen if the doctor is even aware of the policy in the first place.  This is not efficient, and doesn't protect people from potentially losing their functionality or triggering a worse illness.

The role of medicine is to help people get and stay well, not point to policies in the absence of help.

What could possibly explain this bizarre turn in Australian science?  Well certainly one aspect is the Sydney (Capital of NSW )- Melbourne rivalry.  If a person doesn't realize there is a charged atmosphere involved here, then they may believe falsely that Monash has changed its mind, or is reconsidering its research.  We should guard against thinking "Australian scientists have decided..." because they haven't.  The facts Newcastle has may be interesting, but interpreting them is shaky.

  • Have they considered the damage they might be doing to people in this study? I have severe effects on my thyroid function from gluten, and my diagnosis is NCGS. I am also made nearly immobile from join pain triggered by gluten, and not relieved by the absence of FODMAPS.  It would be unethical for them to test me in this manner.  So who did they test?  I suspect it was people less sick than me. 
  • I assume they say what they used as a gluten, and a placebo in the full article.  But I only get to see the pubmed version.  Were there FODMAPS in both diets in the crossover?  The same amount?  Why didn't they test the no-FODMAPS and no-Gluten diet?  
  • Why use the term NCG/WS?  It's gluten, not wheat that bothers us. Ask me my reaction to wheat free beer.  And if you do use that term, then I expect you to test barley and rye in separate crossover studies BEFORE you publish some inane percentage number that people will latch onto and repeat all over the media.   (Do I sound mad?  Yeah, I guess I do. Funding money is too precious to waste on this.) 
  • And where's the study to show the crossover with people who have IgE wheat allergy?  I mean if you're suggesting it's only wheat, it has to be tested. 
  • They're right, the GFD is an expensive diet.  They should consider subsidizing it instead of discouraging it. Also, a whole foods diet is costlier than a regular diet, but that doesn't seem to bother them when they suggest whole grains. 
  • Again, if it's socially restricting, you should give incentives to social places like restaurants for having GF options.  Anyone can keep some frozen GF cupcakes ready for the next GF customer at a cafe or nightclub.
    • What kind of social life do they think we can have if we eat gluten and get sick? 
  • Yeah, the GFD carries risks... like being healthier (more functional), learning to read food labels, and not developing cancers due to long term inflammation.  But I'll take those risks over the gluten risks. Scrutinize this article for the so-called risks of the GFD and tell me if you're convinced. Gluten itself, causes many of those risks, the others are a matter of food choices.
 The gluten free diet takes practice and dedication.  But they're making the risks overblown.  The first thing we should do as a GF community is go to the local supermarket, check that they have donation boxes, and buy $50 of GF groceries twice a year.  If we all did that, those Celiacs and NCGS people who couldn't afford it would have something to find in the local Food Shelf.

We need to remind restaurant personnel that they need not make GF foods from scratch if CC is impossible to avoid.  That we will be glad to just have something frozen and carefully reheated.  Social life doesn't have to end, but nobody will have a better social life while they're sick.

Maybe some of these issues would be fixed if I could read the whole article.  But I'm not sure.  The way the Abstract reads, it seems the sole purpose was to point out a percentage based on shaky science and make it sound definitive. Is that how others see it too, or am I making too much of it? Is my objection overruled or sustained?  You decide.

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