NCGS – Exist or Not?

There has been a plethora of articles recently, mainly in the US, decrying the existence of non-coeliac gluten sensitivity (NCGS). This is a result of a study of 37 (yes, just 37) people tested to see if wheat gluten made them worse or not.

The study itself is quite confusing to pick apart, but essentially I can’t see how the media get to the headlines they did, as per. Anyway, I see that several people have written pieces on the subject so I won’t reinvent the wheel.

The upshot is that, from my reading of the study, they were concentrating on the usual gliadin/wheat only, on GI symptoms whereas most NCGSs are neurological, skin etc rather than gut, they didn’t cut the gluten out for very long, importantly 8% of people did have worse symptoms after the gluten, which is in line with population estimates of 6% with NCGS, and some other factors like FODMAPs may be involved in GI symptoms. We don’t learn much there we didn’t already know. No-one said it was all about gluten.

Anyway, here is what I originally wrote on the TGF Facebook Group (are you a member: lots of practical day-to-day help discussions going on there, so do join in?!).

This is a difficult one to tease out as it is so confusing. I read it to mean that people with GI type problems fared better when they reduced FODMAPs but not necessarily when they reduced gluten. I would say that’s quite likely as a lot of GI problems are exacerbated by poor absorption of the sugars and starches feeding gut baddies so reducing them would help. And don’t forget that most NCGS symptoms are not gut based either. 

Removal of gluten for just a week or 3 days is not likely to make much difference and anyway, who knows what new or types of foods they were eating instead that could have upset them? I bet corn was in there somewhere. It was not a grain free diet was it so why would we expect it to get better?

I note that 8% did have gluten-specific effects. The causes of GI problems are multifactorial. Some it will be FODMAPs, others Gluten etc etc. I think it’s a bit rich to conclude NCGS doesn’t exist from such a tiny, confusing study that seems to ignore those who did get worse with gluten. And anyway, what were they measuring gliadin antibodies or what? If so, maybe those 8% were misdiagnosed coeliacs! 

You would need a lot longer study if you were looking at antibody markers – it takes 21 days to make one for a start. 

In short: loads of holes, ignores the ones who did get worse with gluten (only 8%, who said it would be higher than that – current estimates for NCGS rather than CD are 6% of the population so this is about right) and seems to add weight to the fact that some IBS type patients are malabsorbing starches. Ooh not exactly news!

Anyway, here is a piece on it from GreenMedInfo, which rather echoes my sentiments. I like their call for use of the term non-celiac gluten toxicity, to reflect the fact that there are likely several factors going on with wheat and grain sensitivity, which may not all be about gluten. Sayer Ji feels the use of the word gluten is perhaps confusing the public and stopping people looking at other grain issues like lectins, for example.

I agree with him; I think it is very likely that other fractions of grain foods are causing problems. For some it will be the gluten, others the lectins, others the FODMAPs. still others the morphine-like substances or whatever, or even a combination, which is most likely from my clinical experience. You are sort if stuck using gluten as a word because that’s what the public perceives. Anyway, an interesting point.

I also like the fact he has pointed to an NCGS search on PubMed for studies on NCGS, which make interesting reading too. There are 456 studies, I note.

Here’s his piece for you:


The Mainstream Media Declares: Gluten Sensitivity A Myth — Who Cares?


Up next, we have a piece from Chris Kesser who tells it like it is:

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

I actually don’t think it is even that significant with 37 people. He points out that the study was measuring people with IBS only, that there are other fractions in wheat and that the use of whey meant they could have been reacting to that. I agree there since we know about 50% of gluten sensitives are cross-reactive to dairy too. That’s the reason I don’t advocate whey as a gut healer like most people do, either.


Is Gluten Sensitivity Real?


Finally, one from Mark Sisson who, quite rightly, concentrates on other non-gut conditions like Fibromylagia, Autism, Type 1 Diabetes, Depression etc, all thought to be gluten related. See here, too, for the long list of gluten illnesses I have put on this site for you.

Mark ends with:

Clearly, looking at the gut for evidence of non-celiac gluten sensitivity is not enough. And yes, it may very well turn out that it’s something else in the wheat causing the issues in these conditions, too, but does that change the effective therapy – a gluten-free/wheat-free diet?

No. It still works.

Here’s his article:


Does Gluten Have Any Effect on Non-Celiacs?

Hope that helps you interpret the media headlines doing the rounds. And I didn’t even rant, did I? 😉

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