I was talking with a lady on Monday who told me that she had a ‘gluten intolerance’. Many doctors would assume this meant that the women had coeliac disease (a sensitivity to gluten in foodstuffs like wheat, rye and barley that causes bowel changes, bowel and abdominal symptoms, and may lead to malnourishment if left untreated). However, I believe that individuals can react to gluten and have symptoms from this even if they do not have classical coeliac disease. I have written about this previously here.
This woman gets gut symptoms when she eats gluten, but does not when she doesn’t. Tests reveal that she does not have coeliac disease. Many doctors and other health professionals might be tempted to imagine that this woman’s reaction to gluten are ‘in her mind’. However, as the blog post I link to explains, it is possible to react to foodstuffs in a way that evades conventional testing. Sometimes we doctors simply do not appreciate how limited our methods of testing can be, and are happy to pronounce ‘there’s nothing wrong with you’ when the results of the test we run come back negative. This reasoning is fundamentally flawed.
I was interested to read about a recent study that is pertinent to gluten sensitivity recently [1]. This Australian study focused on individuals just like the lady I met on Monday: they had symptoms of irritable bowel syndrome that were controlled by eating a gluten-free diet, but coeliac disease had been excluded as a diagnosis.
About half this group were fed with bread and a muffin each day containing gluten. The other half were fed with similar bread and a muffin that were gluten free. Almost 70 per cent of those eating gluten containing foods had a recurrence of their bowel symptoms, compared to 40 per cent of those eating gluten-free foods (it is always possible that some or all individuals reacted to something else in the gluten-free foods). The difference was statistically significant.
Those who ate gluten containing food had significant worsening in symptoms such as pain, bloating and fatigue.
The conclusion, “non-celiac gluten intolerance may exist…” Personally, I’d be a bit stronger than this, and say that this disease entity does exist. But nevertheless, the bottom line is that it is indeed possible for individuals to react adversely to gluten but not have celiac disease. Individuals need to be wary of this, I think, because of the risk of being told ‘all is well’ on the basis of negative tests for celiac disease.
References:
1. Biesiekierski JR, et al. Gluten Causes Gastrointestinal Symptoms in Subjects Without Celiac Disease: A Double-Blind Randomized Placebo-Controlled Trial. Am J Gastroenterol. 2011 Jan 11. [Epub ahead of print]
Is the following study as bad news as I think it is? Immune response to dietary proteins, gliadin and cerebellar peptides in children with autism.
From Ataxia, peripheral neuropathy, and anti-gliadin antibody. Guilt by association?
“However, anti-gliadin antibodies lack disease specificity being found in 10% of healthy blood donors.”
So 10% of the population (that donate blood) have gut walls permeable enough to let gliadin pass through?
I feel like said woman up above. While not coeliac, I do have an upset stomach upon ingesting gluten.
I now avoid it….
C
I suspect there’s plenty of foods in our diet that may be giving us a “mild reaction”, maybe even so mild that we don’t notice it until we stop consuming them.
For example gluten, dairy, sugar, etc.
The conclusion of the study was: “Non-celiac gluten intolerance may exist, but no clues to the mechanism were elucidated”. Perhaps Biesiekierski et al are helped by reading http://bit.ly/a9Gvjk and http://bit.ly/cyKHre. VBR Hans
A good find! As a Coeliac and found of GFGs I’ve seen many comments on forums by people who are convinced they are better cutting out the main gluten products (bread/pasta). Likewise I’ve noticed that in Oz and America the thinking is that many people are ‘gluten sensitive’ and that Coeliac Disease only emerges once the immune system can’t cope any more. So this article was very interesting. We’ve tweeted it and added it to our facebook page and tumblr blog. Like your site – nice to see a Dr linking nutrition and health together.
The “possible something else” people react to is Casein – it has a similar opioid metabolism as Gluten.
Where these muffins made with milk?
And reacting to opioid substances is not a “intolerance” and not a “disease”. Gluten and Casein are poisons. Period.
There is nothing wrong in people reacting strongly to these substances. You might be lucky if you don’t react strongly, but believe me, even in you it HAS an effect.
I have recently been diagnosed with Coeliac disease. But repeatedly had the blood test for it and came back negative every time. It was only diagnosed when tested on a genetic level.
I’m exactly the same as this woman “symptoms of irritable bowel syndrome that were controlled by eating a gluten-free diet, but coeliac disease had been excluded as a diagnosis.” Furthermore because my Father died from T-Cell lymphoma caused by undiagnosed Coeliac Disease I’m told it is all in my mind (grief, neurotic, etc). This is despite my Brother and one of my Sons also being diagnosed Coeliacs! Sadly if I point my UK GP to studies like this they are dismissed – just more evidence of my neurosis that I am scouring the internet 😉
I am the same2, as this woman. Mine started with food poisoning whilst in a 4star hotel in Egypt). I have had serious arguments with my GP but he sticks 2the IBS (+hypercondria, probably). My GP also managed 2miss hepatitis A, so now i have biliary cirrhosis and have never even drunk more than 6glasses of wine per year(alcoholism as far as my GP was concerned)…..I HAVE changed my GP. Thanks 4this page, I dont feel such a lonely loon 🙂
I have Relapsing Remitting MS.
Five years ago, I stopped eating gluten and pulses. At that time I couldn’t walk more than 10 metres and was considering having to use a scooter.
Within 3 months I was much better and living a relatively normal life and I still am.
I tried an experiment a couple of years ago and ate bread for five days. My nerve pain became so bad that I couldn’t walk.
Whilst I’ve never had coeliac tests, I don’t really care, all that is important to me is not to eat foods containing gluten.
If I eat bread or pasta, it sits in my gut, causing bloating and constipation.
I can’t even digest oats.
Coeliac Ataxia is becoming recognised as an MS-like disease.
I can’t claim to have beaten MS by eliminating gluten, but life is far better without it.
Within the last 15 years they produced a wheat that contained more gluten as this is gave more rising agent to the flour and of course more loaves of bread, etc. I can eat any other flour, including organic spelt, Kamut, rye and I don’t get any symptoms like I do if its wheat. Tempted by French bagettes and the migraines, skin irratations, rosacea and chest infections all come back with avengance. Having been dismissed by my doctor it took a shiatzu practitioner to find it. Coeliacs disease or bowel problems seem to be endemic in Australia too. Wonder what they eat to cause it? All deficient in Vit D3?
These problems may well be due to wheat-term agglutinin, a truly dangerous defense protein (lectin) from wheat. See http://www.drbriffa.com/2011/01/26/new-study-shows-that-its-possible-to-react-to-gluten-but-not-have-coeliac-disease/
Dr Briffa,
Thanks so much for bringing this up. I am dx Microscopic Colitis and Osteoporosis. I have (from a cheek swab) two genes that make me susceptible to Coeliac but have never been tested for Coeliac (and cannot now be because I am eating gluten free).
My Gene data is:
HLA-DQB1 Molecular analysis, Allele 1: 0201
HLA-DQB1 Molecular analysis, Allele 2: 0302
Serologic equivalent: HLA-DQ 2,3 (Subtype 2,8)
I (and most of the 700+ people Dx with Microscopic Colitis on my support group) can show that long term avoidance of gluten has a significant positive clinical effect on Microscopic Colitis symptoms.
I have been researching this for the past few months. It is so complex. You can have non-coeliac gluten sensitivity AND coeliac disease. Some think that gluten sensitivity is a state of genetics and that CD is just ONE form of gluten illness but that the vast majority of illnesses have nothing at all to do with gut villi damage.
In fact, a common denominator in auto-immune disorders is thought be gluten sensitivity, with or without CD.
The other thing to note is that there is a form of gluten in ALL grains not just the wheat, barley, rye and sometimes oats we think of as gluten grains. Many people are grain sensitive rather than gluten sensitive. I know. I am one of them.
You can now get a genetic test to find out if you are likely to have a gluten problem, whether that is to traditional gliadin, having CD or any other form of gluten illness.
I have put some new pages on my site if anyone wants to find out more and have just written up all the research, testing and treatment options into an ebook on the subject. Hope it helps.
Good on you John – I think I have written to you before about intolerance of gluten. I and two of my children have this intolerance in vsrying levels.
I feel it causes me inflammation of the oesophagus as well, a good treatment for this is a large teaspoon of Jarrah honey night and morning.
I think that the common denominator in auto-immune diseases is having a gut that’s as leaky as a sieve. Letting peptide chains through is asking for trouble.
See The Leaky Gut
and
Vitamin D and the Colon.
P.S. Please fix the first link in my post above!
One of the best books I’ve read (so far) on gluten and wheat intolerances and coeliac is “Healthier without Wheat” by Dr Stephen Wangen. It’s the first clear explanation I’ve come across of the differences between coeliac, non-coeliac gluten intolerance, conventional wheat allergies, non-gluten wheat allergies and intolerances etc etc.
One thing it taught me is that celiac disease is essentially villous atrophy. If you haven’t got this symptom, you test negative for coeliac – but this doesn’t mean you haven’t got a gluten intolerance. If only more doctors would recognise this!
I was tested for coeliac disease various times, because the endocrinologist really thought I was likely to be coeliac on account of my clinical picture. However, he didn’t know enough to know that the tests were invalid because I was already following a gluten and wheat-free diet! I discovered this critical little fact from Dr Wangen’s book years afterwards, so I still don’t know whether I am actually coeliac or not.