Non-coeliac Gluten Sensitivity

[grommet]

This was recently posted on one of the UK boards. Some of you may find it interesting.

There appears to be more than one type of “Non-Coeliac Gluten Sensitivity”. Most commonly an IBS-like, functional bowel disorder which causes symptoms which are dose related. These people feel better avoiding wheat but do not have to avoid all traces of gluten. But there are also individuals (fewer in number) who appear to be as sensitive to gluten as diagnosed coeliacs, but for whom, for the time being, celiac disease has been ruled out as their blood and biopsy tests are all normal. This group may have a suggestive family history (auto-immune disorders, celiac disease in relatives) indicating that they have the genes that predispose to celiac disease, but they cannot currently get a satisfactory clinical diagnosis or support at present. This is not surprising. The understanding of celiac disease has come so far, so quickly, from a very rare disease that affects very ill, usually Irish, children, to being recognized as the most common inherited disorder in the western world, affecting even apparently ‘healthy’ adults. Along side this is the inexorable rise of IBS-type functional (ie not pathological) disorders which may also be diet related not to mention fashionable, faddy or weight-loss diets. How 'true' coeliac disease and other ‘functional’ (ie non-harmful) gut conditions may interact is only just starting to be looked at. Almost certainly in the future the idea of a Coeliac Spectrum will gain acceptance (pioneers of this idea are already promoting this) which will include a bigger range of ‘non-classical gluten sensitivity’. (See below for refs on this).

Until then you are a bit on your own although you will find there are increasing numbers of people in the same position. You may well decide just to go on a gluten-free diet. However there are things that could do to help you decide whether other investigations/treatment are needed, whether you might be part of the ‘coeliac spectrum’ and therefore need to follow a strict diet, or whether more modest dietary and /or lifestyle changes are enough for an improvement in health.

Firstly you should pursue with your doctors any other causes to eliminate other very serious conditions like Inflammatory Bowel Disorders (Crohn’s, colitis) and of course bowel cancer (especially if you are over 40) which may require other investigations (eg colonoscopy). Less serious conditions like Small Bowel Bacterial Overgrowth and Pancreatic Insufficiency should also be considered – these are both found in people with IBS as well as celiac disease and can be treated with remarkable results. Note that some of these conditions are also hard to diagnose and some may also appear to respond to a gluten/wheat-free/low carb diet.

Does gluten/wheat causes you functional or pathological symptoms ie is it harming you in any other way? Does gluten just cause pain, wind, bloating, diarrhea (in the way that lactose intolerance does) or is it affecting your immune system and/or causing some form of malabsorption? Results of other blood tests can help here. Do you have unexplained anaemia, low B12, ferritin or abnomal liver or pancreatic blood results? Other autoimmunbe antibodies? Have you ever had an abnormal bone scan or unexplained fractures? Normal results would suggest a functional problem while abnormal tests may need further investigations.

Do you or other people in your family have related auto-immune disorders? If so repeat testing in the future may be appropriate. You could also undertake a gene test, which you will probably have to pay for but could either eliminate the possibility of coeliac disease or make it clearer that your problem with gluten may be genetic. You could also pay for a IgG test (while eating gluten) which while not very specific will also pinpoint a real problem with wheat.

Are symptoms dose related – eg more wheat, more diarrhoea? If you stop eating gluten for eg 2 weeks and then slowly reintroduce small amounts is the reaction still as bad? Yes to the first and No to the second might indicate a functional problem. BTW do not underestimate the ‘nocebo’ effect: it is perfectly possible for foods that you think are making you ill, to make you feel ill (pseudo-allergic reactions). Do several blind test using foods that have been prepared with similar tasting gluten-free and normal flours, breadcrumbs or pasta (eg cheese sauce, gravy, lasagne).

If your conclusion is a functional problem I do suggest doing some research on IBS. There are some very good websites offering very practical advice.

If you conclude that the problem really is specifically gluten there are two very good websites I suggest looking at, by Dr Scott Lewey in the US (The Food Doc) and Dr Rodney Ford in New Zealand (Dr Gluten) which will give you a lot of information, including medical refs (they are both clincians), and put you in touch with many other people “diagnosed” with “non-coeliac gluten sensitivity”:

Open Original Shared Link

Open Original Shared Link

Refs:

1: Clin Gastroenterol Hepatol. 2007 Jul;5(7):844-50. Epub 2007 Jun 5.Links

Predictors of clinical response to gluten-free diet in patients diagnosed with diarrhea-predominant irritable bowel syndrome.

Wahnschaffe et al, University Hospital Ernst Moritz Arndt Universität Greifswald, Greifswald, Germany.

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Conclusions: Celiac disease-associated serum IgG and HLA-DQ2 expression can identify likely responders to gluten-free diet in d-IBS patients.

Gluten sensitivity confirmed by genetics and blood tests in irritable bowel syndrome, Dr. Scot Lewey

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I have found many but not all of my patients with suggestive symptoms of gluten sensitivity who have “normal” celiac blood work have elevated stool gliadin IgA antibodies (Enterolab), with or without elevated tissue transglutaminase IgA antibodies, especially those with HLA DQ2 or DQ8. These individuals invariably respond to a gluten free diet. I myself am such a person. I have also found many of these individuals have intestinal biopsies demonstrating increased numbers of intraepithelial lymphocytes, the earliest finding in celiac disease.

We believe that the presence of an elevated serum gliadin antibody is indicative of gluten sensitivity in most people. We concede that such individuals often do not have “true celiac disease” as it is now strictly defined by presence of HLA DQ2 or DQ8, a positive IgA endomysial antibody test or tissue transglutaminase IgA antibody with characteristic small bowel biopsy. However, our experience is that such individuals commonly present with symptoms identical to those with celiac disease and these symptoms respond to a gluten free diet. Now, researchers from Germany provide their scientific data that validates what we have observed and have been writing about. In the July 2007 issue of Clinical Gastroenterology and Hepatology, Wahnschaffe et al., from Germany report that gluten sensitivity causes symptoms meeting criteria for diagnosis of diarrhea predominant irritable bowel syndrome (d-IBS) that responds to a gluten-free diet.

Am J Gastroenterol. 2000 Feb;95(2):463-8. Links

The natural history of gluten sensitivity: report of two new celiac disease patients resulting from a long-term follow-up of nonatrophic, first-degree relatives.Niveloni S, Pedreira et al Dr. Carlos Bonorino Udaondo, and Universidad del Salvador, Buenos Aires, Argentina.

OBJECTIVE: Early studies revealed that up to 50% of non-atrophic, first-degree relatives of celiac disease patients exhibit features of gluten sensitivity. However, whether these features progress to a fully expressed celiac disease remain partially known. Our aim was to report two new patients resulting from a prospective, long-term surveillance of relatives who were nonatrophic at initial assessment. METHODS: After a median time of 86 months (range: 42-102 months) from the baseline assessment, we re-evaluated 44 first-degree relatives of propositi who had taken part in family studies and in whom baseline small intestinal biopsies were normal. At the baseline screening, 21 relatives had positive serum antigliadin antibodies and/or increased intraepithelial lymphocyte infiltration, and 23 did not. In addition, 11 of 18 had a celiac-like response to rectal gluten challenge and 16 of 34 possessed the characteristic HLA DQ2 haplotype (DQA1 0501 DQB1 0201). Re-evaluation was based on celiac-related serology antigliadin (AGA) and endomysial (EmA) antibodies. EmA-positive subjects underwent intestinal biopsy. RESULTS: At the end of the study, EmA was positive in only two subjects. Histological examination revealed flat small bowel mucosa in both. At baseline, both cases were EmA-negative and no minor histological changes were observed. One was a woman with positive baseline IgA and IgG AGA and a rectal gluten challenge with a celiac-like response; the other patient has presented only with a positive IgG AGA. In both cases, progression was detected in a clinically silent context. Both new patients had the characteristic HLA DQ2 haplotype. CONCLUSIONS: Our data suggest the need to re-evaluate relatives who have been negative on initial screening for celiac disease. Up to now, the progression to severe enteropathy was only observed in relatives who had presented some evidence of gluten sensitivity and the characteristic HLA DQ2 haplotype. Longer longitudinal studies are necessary to obtain definitive conclusions

[grommet]

What - no comments? Perhaps you couldn't be bothered wading through the whole email.

I particularly thought that the comment re "pathological or functional symptoms" is extremely interesting.

Does eating gluten *just* cause Sickness and D, or does it cause problems to the immune system from a leaky gut? I think the distinction on this will be just another slot on the spectrum of gluten sensitivity.

People (inlcuding people on this board) have always seemed to say that gluten sensitivity IS Coeliac disease. I think the recent shift in views shows that this is no longer true.

I initially when trying to get diagnosed wanted to be told I was coeliac. I was devastated when everything came back negative as I knew something was seriously wrong with me. I have now come to terms with the fact that I am somewhere on the gluten sensitive spectrum but also accept that I have to have a lifelong gluten-free diet.

[EBsMom]

That was *very* interesting. I find myself "somewhere on the gluten sensitivity spectrum" with you....along with my 2 children. We're all positive symptoms, positive Enterolab results, positive dietary response....but negative genes. My dh simply decided years ago that eating bread and pasta makes him feel "bad" so he eliminated such things from his diet. I'd LOVE to have more of a handle on this....but I guess we can't, at present, because not even the experts have a real handle on it. I'm just glad that the idea of a spectrum is gaining some credence....this "gray" area that we non-celiac gluten intolerant people find ourselves in can be a pretty lonely place. Thanks for sharing!!

Rhonda (Rho)

[Fiddle-Faddle]

I agree with the idea of a "celiac sprectrum."

I don't think it is possible to rule out celiac in someone with all the symptoms. The bloodwork can have false negatives. The biopsies can miss affected areas or be misread. And you can't rule out celiac by genetic testing, because there are people with biopsy-confirmed celiac who do NOT have the genes!

If it walks like a duck, quacks like a duck, poops like a duck....

[Fiddle-Faddle]

I agree with the idea of a "celiac sprectrum."

I don't think it is possible to rule out celiac in someone with all the symptoms. The bloodwork can have false negatives. The biopsies can miss affected areas or be misread. And you can't rule out celiac by genetic testing, because there are people with biopsy-confirmed celiac who do NOT have the genes!

If it walks like a duck, quacks like a duck, poops like a duck....

[hathor]

I really haven't seen many people on this board saying that gluten sensitivity is the same thing as celiac. They may come in thinking that but are soon disabused of that notion

The only evidence of long-term damage for NCGS I know of is that of neurological problems, which are present not just with the "celiac genes" but DQ1. There needs to be more research.

If someone with NCGS has measured malaborption, I can't see how that wouldn't create problems. Similarly, if someone has the antibodies, it cannot be a healthy thing. Perhaps those antibodies have yet to, or never will, attack the villi, but I don't see why they couldn't attack other parts of the body, just as those same antibodies do with celiacs.

I think plenty of us nonceliacs (or the nondiagnosed) have multiple food intolerances, which would indicate a leaky gut. We also seem to get the same possible symptoms when glutened.

An article I really like:

https://www.celiac.com/articles/1101/1/Glut...ewey/Page1.html

[splash]

I am DQ1 (but don't have the "real" celiac genes DQ2/DQ8) and I agree - there is a spectrum and the research is not complete. Articles like this are really helpful - and it's so timely for me that you post this now, since I'm just getting my DNA test back.

I don't understand the logic behind limiting the label "celiac" to such specific requirements like the DQ2 and DQ8 genes. When I got my test results (showing that I had double DQ1), the test itself and my doctor told me that it meant that my test is Negative and I don't have celiac disease, but that it would still be a "good idea" to maintain the gluten free diet. I agree that it's a good idea, but it was pretty tempting that day to give up on the diet just a little bit. But this and the Hadjivassiliou articles tell me there is evidence behind the idea that gluten still can cause long-term damage. I think the idea of a limited notion of what can be called celiac disease could lead to understimations of the widespread injury gluten causes.

If anyone can explain why celiac disease is only considered a diagnosis where there are DQ2 and DQ8 genes, I'd be very interested to know. I'd also like to know what would happen if I went back to eating gluten for 4 months, had a biopsy and demonstrated flattened villi: would everyone backtrack and decide to call me a celiac after all? (What difference does it make?)

[ravenwoodglass]

If anyone can explain why celiac disease is only considered a diagnosis where there are DQ2 and DQ8 genes, I'd be very interested to know. I'd also like to know what would happen if I went back to eating gluten for 4 months, had a biopsy and demonstrated flattened villi: would everyone backtrack and decide to call me a celiac after all? (What difference does it make?)

I wish I could explain that one also. I am of the opinion that both are just as serious and life altering. Where you live can also determine whether you are gluten intolerant or celiac. Here in the US I am considered gluten intolerant, I carry a double DQ9, however my presentation was definately the same as someone with gene determined celaic disease. I found out not too long ago that if I lived in Japan my gene would be considered a celiac gene and not a gluten intolerant one.

To add to the confusion when my DD was diagnosed by biopsy the GI told her that she was technically gluten intolerant because her villi were not totally destroyed. He did tell her that if she wanted to become a full blown celiac she could continue eating gluten until the villi were gone.

There is much to be learned about this genetic difference and the attempt by doctors to define one presentation as 'just gluten intolerance' rather than celaic changes, makes many people think that they need to be less careful because they aren't 'technically' celaic. This of course leads to noncompliance with the diet for some, which leads to more doctor visits, tests, meds and the development of seemingly unrelated issues like arthrits, gallbladder and endocrine problems.

There is still a great deal to be learned about celiac especially in the US where we are so pharma driven.

[Fiddle-Faddle]

I really haven't seen many people on this board saying that gluten sensitivity is the same thing as celiac. They may come in thinking that but are soon disabused of that notion

The only evidence of long-term damage for NCGS I know of is that of neurological problems, which are present not just with the "celiac genes" but DQ1. There needs to be more research.

What about DH? Many who have DH DO have positive biopsies, but many DON'T. It's still considered a positive diagnosis of celiac, even in the total absence of intestinal symptoms.

And, as I've said before, there are people with positive biopsies and negative gene test results.

I have not been "disabused of that notion," as you put it, and many others haven't, either. We've just learned from experience with doctors that it's a waste of time to argue with narrow-minded people.

Nobody has PROVED that celiac and gluten intolerance are not on the same spectrum, but the evidence that they are is mounting quickly.

I agree with you that more research is needed. but first, some people need to be "disabused of the notion" that biopsy is the gold standard of diagnosis for celiac.

[hathor]

What about DH? Many who have DH DO have positive biopsies, but many DON'T. It's still considered a positive diagnosis of celiac, even in the total absence of intestinal symptoms.

And, as I've said before, there are people with positive biopsies and negative gene test results.

I have not been "disabused of that notion," as you put it, and many others haven't, either. We've just learned from experience with doctors that it's a waste of time to argue with narrow-minded people.

Nobody has PROVED that celiac and gluten intolerance are not on the same spectrum, but the evidence that they are is mounting quickly.

I agree with you that more research is needed. but first, some people need to be "disabused of the notion" that biopsy is the gold standard of diagnosis for celiac.

I don't think we disagree. I certainly don't disagree with anything you've said, except to the extent that you think I am espousing a position I have never taken. Let me try to explain myself further. I apparently didn't do as good a job as I might have the first go round

I was saying that most people on this board do not think that celiac and gluten sensitivity are the same thing. I think most agree with me that doctor-diagnosed or -diagnosable celiac is just a subset of gluten sensitivity. (Being part of the same spectrum, as you put it, is another way of expressing the same thing.) I don't think that biopsy is necessary to tell anyone that they have a serious problem with gluten, and requiring a positive biopsy before telling someone to avoid gluten for life does a disservice to their health. The biopsy samples may miss the damage, the endoscopy might be done before damage has had time to occur, or the gluten may be causing damage to some other part of the body.

If you look through my previous posts, you will see that I am not one who thinks that biopsies are necessary to conclude that there is a problem whose solution is to avoid gluten. I don't think that having a doctor's OK not to eat the stuff or having an official diagnosis that all doctors will agree with is necessary. I frequently defend Enterolab, for Pete's sake.

You'll also see that I often think that going to the doctor is a waste of time. I didn't bother with blood testing, much less getting biopsied. Just yesterday I had quite the rant about the medical profession, as a matter of fact.

I've also said that folks can have problems, both diagnosable celiac and otherwise, without the so-called "celiac genes." I'm one of them.

I don't call myself "celiac" because I haven't had the testing. But I think it is a distinction without a difference. I get sick the same way a doctor-diagnosed celiac would if I consume gluten, and I fell better the same way if I don't. As you'll recall, I agreed with your duck comment ("if it walks like a duck, quacks like a duck, poops like a duck...")

I hope I've made my position clearer now.

[Fiddle-Faddle]

Whoops--sorry for misunderstanding your position!

[hathor]

That's OK. I should have expressed myself better. I just wanted you to know we are definitely on the same side.