Just because someone doesn’t have coeliac disease, doesn’t mean they don’t have a problem with gluten

Irritable bowel syndrome (IBS), sometimes referred to a ‘functional bowl disorder’ (FBD) is characterised by symptoms such as abdominal bloating and discomfort, and constipation and/or diarrhoea. Its cause is often said to be unknown. However, in practice I find two approaches to be generally effective in combating the symptoms of IBS. These are:

1. Identification and elimination of food triggers.

2. Correction of any underling imbalance there may be in the ‘ecosystem’ within the gut.

You can read more about this here and here.

It is possible that any food can trigger IBS symptoms, but my experience in practice is that wheat is the number 1 offender. Now, sometimes wheat sensitivity is caused by a sensitivity to a protein found in wheat (as well as oats, rye and barley) known as gluten. In conventional medicine, gluten sensitivity is a recognised conditions that goes by the name of coeliac disease. This can be tested for using blood tests and biopsy of the lining of the small bowel.

If the tests come back as positive coeliac disease is diagnosed. If they come back as negative it is often assumed that not only is their no coeliac disease, but there’s no sensitivity to wheat/gluten either. But is this really so?

I have seen over the years many patients who have turned up negative test results for coeliac, who nonetheless have IBS symptoms that seem to have a very clear relationship with wheat consumption. Last year, for instance, I wrote about a four-year-old girl whose parents told me she got diarrhoea when she ate wheat, but had no diarrhoea if she didn’t. The test of coeliac disease was negative, and her dietician (with the support of her gastroenterologist) enthusiastically advocated a diet for this child that was full of grain-based foods including wheat.

So, what are we to make of individuals who don’t appear to have coeliac disease but nonetheless appear to react adversely to wheat? Well, it’s possible that individuals may react to wheat in a way or through mechanisms that are not necessarily related to full-blown coeliac disease. This concept was put forward recently in a paper which appeared in the American Journal of Gastroenterology [1]. Doctors based at McMaster University in Hamilton, Canada and the Mayo Clinic, Minnesota, USA, put forward the idea that gluten can induce symptoms similar to FBD, even in the absence of fully developed celiac disease.

In short, just because someone doesn’t have coeliac disease, doesn’t mean their bowel symptoms are not due to gluten.

Some people are keen to be tested for food sensitivity, though my experience in practice is that no tests are foolproof. One reason for this is that the body can react to food through several mechanisms. Let’s imagine that someone has a food sensitivity as a result of an antibody reaction to that food. If the test being used specifically looks for this antibody then it’s got a fair chance of picking up the problem. However, if it’s testing for something else, then it’s unlikely to identify the problem.

One simple but often effective way of identifying food sensitivities is to eliminate foods to see if it helps. One problem here is that some individuals are sensitive to a range of foods, and if all of them are not removed, symptoms may persist even though problem foods have been eliminated. To be on the safe side, I tend to recommend that when they take out wheat, they take out other gluten-containing grains as well as dairy products.

In my experience, the overwhelming majority of IBS sufferers improve dramatically on this regime. Foods can be added back into the diet (about one every 2 days) to see which foods cause a return of the IBS symptoms.

References:

Verdu EF, et al. Between Celiac Disease and Irritable Bowel Syndrome: The “No Man’s Land” of Gluten Sensitivity Am J Gastroenterol 19 May 2009 [epub ahead of print publication]

19 Responses to Just because someone doesn’t have coeliac disease, doesn’t mean they don’t have a problem with gluten

  1. Jake 28 July 2009 at 6:17 am #

    I agree that wheat causes most problems in people with gastric distress. But legumes and other grains are problematic for many people too.

    I think the easiest and most effect diet for these people are to do a low carb diet, then they eliminate most common problematic foods there are. It sure cured my gastric problems and it has cured everyone else I know who has had gastric problems.

  2. Chris 28 July 2009 at 10:18 am #

    I agree with Jake. Meat Leaves and Berries. Plus dairy (eggs and live yoghurt etc) if you can take it

  3. Anna Salvesen 28 July 2009 at 9:12 pm #

    I agree, a low carb diet can reduce many GI symptoms (especially if wheat is eliminated rather than reduced). But one has to beware of low carb formulated foods like LC breads, which contain added wheat gluten and soy flour to boost protein and reduce starch content (plus addign gluten improves rising performance in fast bread production techniques). One could actually increase gluten consumption with high gluten but low carb processed foods. Home bread machines also often call for high gluten flours or added gluten.

    Another issue with gluten testing is that the standard practice of blood tests and intestinal biopsy, which can only rule in celiac disease, but can’t rule it out. Dr. Kenneth Fine of Enterolab.com has a newer, more direct test protocol – testing for antibodies in the GI tract with with fecal samples. Genetic testing with a cheeks swab are also a good, non-invasive way to determine if one has the genes that predispose to gluten sensitivity or celiac.

  4. Diana Nixon 31 July 2009 at 10:50 am #

    I’m so glad this issue is being discussed as I feel wheat intolerance is largely unrecognised despite being a common problem. I was very reluctant to accept that wheat was an issue for me as the prospect of life without toast for breakfast was unthinkable.
    However, when I finally did give up wheat, the results were remarkable. Not only did the bloating disappear within days, but my energy levels increased and my joint aches and pains vanished. Interestingly, I also lost a certain puffiness of face and knees, and my rings all felt looser. It made me realise that wheat must have an inflammatory effect on the body. I lost about half a stone over a month, but looked like I’d lost far more because of the flat stomach and lack of puffiness.
    Being wheat free is not easy, especially away from home. I’m now about 95% wheat free and feel so much better for it. If I do have the occasional sandwich, say when travelling, the bloating returns immediately.
    I have been told that French, Italian and Polish bread is much less likely to cause bloating, and assume that’s because it’s locally grown wheat and not the over-processed high-gluten varieties in use here. Can anyone tell us more about that?

  5. Victoria 31 July 2009 at 3:28 pm #

    I’m also glad this is being discussed as approx 13 years ago after many visits to the doctor I was booked in for a biopsy etc after suffering for about two years with severe bloating, lethargy, digestive problems, aching joints and puffiness – pretty much the same as Diana above. I actually gave up gluten for the 6 mths before my test date as couldn’t deal with feeling so rubbish. My test for coeliac disease came back negative but I have since pretty much avoided wheat, barley, rye, oats even corn as that caused me problems. Recently unbeknown to me I had some ginger beer, I felt rubbish over the three days I was drinking it and when double checking the label found it had barley in it. I also avoid dairy products as these cause me to have outbreaks of spots. My blood group is 0- and after researching this found links with this and the very foods I react to. Interested if anyone else has any thoughts on this…

  6. jo 31 July 2009 at 9:19 pm #

    victoria- from what i have been told you need to be eating wheat when they test (blood or biopsy)or you can falsely come up as negative to coeliacs even though you may have it.
    i have been given several coeliacs blood tests over the years but all are negative. the last i forced myself to eat a lot of wheat for the 6weeks before the test and although it tasted lovely – i felt like crap!(constipated, bloated, wheezy, tired, palpitations and generally like i was about to get an illness) so stopped it again straight after.
    my gp wont do a biopsy as he doesnt think i should if ive had negative blood tests.
    also my sister and cousin also have had biopsys for coeliacs – and both came back negative- so gp thinks there is some other wheat sensitivity other than coeliacs that cannot be tested for conventionally.

    i’d be interested in the info on Dr. Kenneth Fine of Enterolab.com as i still wonder if the tests are negative as i have been avoiding wheat for so long (almost 14 years- infact it was you who advised me to stop John when you had a clinic at surbiton) although i have been 100% strict only the last year or so for gluten in things like gravy. i have many of the coeliacs symtoms if i eat it, and get annoyed that people dont class you as having a genuine problem if you dont have a test to prove it. i also find it hard as many gluten free foods are really expensive.

    but- has anyone tried EFT for gluten sensitivity- i have been offered free sessions with a EFT practitioner to work on this- but am unsure if it would be ‘bad’ for my body to eat it even if i had less obvious symptoms? any thoughts or experiences?

    jo

  7. Julie 1 August 2009 at 12:48 pm #

    I have just had a negative result for coeliac but think I do have problems with either wheat or gluten and share most of the symptoms described above. I have had IBS probably since childhood (am 50 now) and am sick of it. Can anyone tell me how long I need to do the gluten exclusion diet before I start to re introduce foods such as dark rye ryvita which I think I can tolerate? How quickly do you feel the benefits of a gluten-free regime?
    thanks
    Julie

  8. Jackie Bushell 4 August 2009 at 7:45 pm #

    I’ve also had various blood tests for coeliac, all negative. Not so long ago I read somewhere that gluten sensitivity is basically no different to type B food sensitivities to other foods. In other words, if you don’t eat anything containing gluten in the weeks/months preceding the test, you may well have temporarily lost your sensitivity to it. Since I generally follow a wheat-free and grain-free diet, I now suspect that all the coeliac tests they did on me were invalid.

    With the last one, I specifically asked the endocrinologist whether I needed to eat gluten in the weeks preceding the blood draw because of this issue, and he said no, so I didn’t.

    Has anyone got a definitive answer on whether or not eating a gluten-containing diet prior to a coelic screen is necessary for the test to be valid?

    Jackie

  9. Stella 7 August 2009 at 11:42 pm #

    The way I understand it is that a blood test can be used to test for all sorts of allergies or intolerances and will show things up by reactions in test tubes. If the test done for Coeliacs is a colonoscopy there is the need to eat gluten grains because the damage done to the colon by the gluten will be reduced or even completely gone if no gluten has been eaten for some time, though I’m not sure of the time scale.

  10. Julie 8 August 2009 at 11:55 pm #

    Thank you for sharing your stories … it’s so good to know that I am not alone in all of this. It can be so frustrating and just plain exhausting! Especially when the people that you trust with your health (your doctors) don’t seem to have a clue!! AHHHH!! Thank you Thank you.
    Here’s to our gluten free health and happiness!

  11. Liz Smith 10 August 2009 at 9:32 pm #

    A Shiatsu therapist told me to give up wheat for a month and see what happened. He recommended it because he said I looked a real mess. Within a week the migraines had stopped, the roseacea had gone, I stopped scratching like a dog with fleas, (along the stomach meridian) I had my first glass of wine for years, and that winter I stopped having chest infections. I learned to check shampoos, shower gels for wheat germ oil these were also off the menu so to speak.

    My friends took some convincing but I just continued on eating a non-wheat diet. I’ve never been a lover of dairy so I had removed two of the most common irritants.

    I continued for over 15 years on this diet, finding things I could eat, Kamut and Spelt flour seems to be ok. I’ve got a pendulum or I muscle test new items. But about 6 months ago I wondered if I would ever be tolerant of wheat again. Some french bread and an occasional slice of bought cake or pie and Duram wheat pasta surely could not hurt? Well now the roseacea is back and so are the migraines, soon after a piece of home make cake and the itching is back. I’m too plump to be ceoliac just intolerant of wheat and its by products. So I’m back on my usual no wheat and no milk diet. Doubt if I’ll ever be clear of it as I must have had it for about 25 years before anyone found out what it was. The doctor didnt.

  12. Trinkwasser 11 August 2009 at 10:12 pm #

    William Davis has a big down on wheat

    http://heartscanblog.blogspot.com/2009/03/wheat-belly-revisited.html

    It may not be the gluten, it also contains lectins and possibly the proteins may be involved.

    I know that wheat spikes my blood glucose far worse than any other grains (even wheat bran will do it) and while I minimise grains in general I find I don’t have the same reaction to oats or rye (be careful though as they stuff wheat into some brands of oatcake and ryebread).

    It’s been bred far more than most other grains, maybe in trying to increase disease resistance they have made it toxic to many humans too.

  13. Andy 16 August 2009 at 12:27 pm #

    I had the same IBS and other symptoms reported by others in their comments, for more than 20 years.

    I only excluded wheat after my wife was medically diagnosed with coeliac disease – it was easier to have both of us on a gluten-free diet.

    Within a couple of weeks I felt far, far better. It has taken several years for the accumulated effects of 20 years of terrible stress on my body to resolve completely.

    I don’t test positive for coeliac disease, but something in wheat clearly has an effect on me.

  14. Joe 17 August 2009 at 9:16 pm #

    I’ve read a LOT of misleading info in this article and subsequent posts. I became very ill several years ago after being repeatedly diagnosed with IBS. I was very lucky that I lived less than a mile from the Mayo Clinic in Jacksonville. The first test they did was the blood test for Celiac disease which came back negative. Because my condition was getting progressively worse, they did a biopsy of my small intestine and found conclusive evidence of Celiac Disease. Apparently, the blood test is definitely not foolproof. It’s important that if you are going to have the biopsy then you need to eat gluten prior to the test. A gluten free diet will allow the intestine to properly heal and the biopsy will not find anything. A colonoscopy will NOT detect celiac disease as it screens the large intestine only. A tube with a camera is placed down the throat to examine the small intestine. A mild anasthesia is used and the procedure is not unpleasant at all and there is no need for bowel cleansing prior to the test. Bottom line: don’t accept the blood test as a definitive diagnosis. Hope this helps.

  15. Dr John Briffa 18 August 2009 at 9:49 am #

    Joe

    Can you be specific about what you think was misleading in the blog post above?

  16. samantha 5 October 2009 at 10:04 pm #

    i am looking for a little bit of information my 3 year old daughter has just last week been diagnosed with ceoliac disease and milk intolorance by her dietician but i took her down to her doctor today and he advised me to put her back on gluten based food and milk products my husband and myself have just got her stomach cramps and diorreha and sickness to stop i dont know who’s advice to follow i dont want her to be in pain anymore

  17. Jessika 14 October 2009 at 5:53 am #

    My family having to be gluten free since I have celiac disease they claim to feel much better after not eating gluten. Or at least not have as bad stomach problems as usual, and when wheat is introduced back in they can handle it- just with discomfort. I think even just being intolerant to wheat is cause enough to go gluten free.

    - Jessika : Celiac Speaks – My Personal Notes

  18. Jackie 29 December 2009 at 2:12 am #

    Oh my God! I can’t believe what I am reading here…seems like there are a lot of people who have noticed a correlation between consuming wheat products and a worsening of nagging, uncomfortable symptoms. I, too, get an extremely puffy face and tummy from eating wheat. The rosiness of my cheeks increases to the point of where I get broken capillaries on my cheeks, and I feel so bloated and I get an increase in constipation from eating wheat and even oats. I have tested negative for celiac, but I feel I have some sort of sensitivity or intolerance to this grain. I get so puffy in the face from wheat – I remember someone asking once if I had lupus! I can eat it in small quantities, but if I am not careful over the holidays, I look like I have gained 20 pounds even if it is only 5. I do not have IBS, but have suffered terrible bouts of severe constipation from over consumption of gluten containing products. I am so happy to have discovered a low gluten/grain diet. Blessings to all who seek a healthy, happy life!

  19. ant 15 January 2010 at 5:21 pm #

    Just read these posts and the article. I 100% agree with this. I have Microscopic Colitis. After my diagnoses Dr. Fine’s tests showed me to be intolerant to Gluten, Diary and Soy. I have kept off these foods and am making gradual progress….. it takes a long time for the gut to heal and the immune system to calm down. I belong to to a Microscopic Colitis support group where I am certain most of the 500 sufferers would also agree with this article. Thank you Dr Briffa. Please keep beating the drum on this. There are many people unnecessarily suffering because not enough Doctors realize the connection between these Gluten, Diary and many GI diseases.

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