Coeliac disease often goes undiagnosed, but testing will not always identify sensitivity to gluten

Coeliac disease a condition in which there is an intolerance of the protein gluten, found in grains such as wheat, rye and barley. The intolerance causes a flattening out of the finger-like projections in the small intestine, which dramatically reduces the surface area of the gut available for absorbing nutrients from our diet. Not surprisingly, therefore, those with coeliac disease who go undiagnosed for an extended period of time can end up malnourished and underweight.

One could argue that coeliac disease starts in the gut, and there’s no doubt that it can cause gastrointestinal symptoms including bloating, wind and digestive discomfort. But the condition can give rise to many other symptoms too, many of which are unlikely to be put down to as ubiquitous a food component as gluten. Here’s a list of potential symptoms from the coeliac.org. uk site:

  • diarrhoea, excessive wind, and/or constipation
  • persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting
  • recurrent stomach pain, cramping or bloating
  • any combination of iron, vitamin B12 or folic acid deficiency
  • tiredness and/or headaches
  • weight loss (but not in all cases)
  • mouth ulcers
  • hair loss (alopecia)
  • skin rash (dermatitis herpetiformis (DH))
  • tooth enamel problems
  • osteoporosis
  • depression
  • infertility
  • repeated miscarriages
  • joint and/or bone pain
  • neurological (nerve) problems such as ataxia (poor muscle co-ordination) and neuropathy (numbness and tingling in the hands and feet).

A few weeks ago I was speaking at an event and spent some time talking with a woman who has vast experience in coeliac disease. She told me that most common symptoms of coeliac disease are actually neurological in nature – a category which comes up last in the list on the coeliac.org.uk site but perhaps should be first.

I was interested to see a study just published in the American Journal of Gastroenterology which estimates that 1.8 million Americans suffer from the condition, as diagnosed by bloods tests (positive immunoglobulin A tissue transglutaminase and immunoglobulin A endomysial antibodies) [1].

Here’s a statistic that concerned me though: 1.4 million (78 per cent) of them don’t know they have the condition. Given the fact that coeliac disease presents in so many (and perhaps so many unexpected ways), it’s  perhaps not much of a surprise that the condition can so often go undetected.

However, there’s another side to this issue that I think needs recognising. Just because someone comes up negative on blood tests for coeliac disease, does not necessarily mean they don’t have a problem with gluten. This is not just my opinion or clinical experience, by the way, as Australian research published last year shows it [2].

Another interesting thing about this recent study is that it assessed whether or not individuals were eating a gluten-free diet (or not). It was found that about one in every 160 people had adopted a gluten-free diet, though in about 80 per cent of these, there was no formal diagnosis of coeliac disease.

This finding is perhaps not surprising, seeing as it is possible for individuals to have symptoms of gluten intolerance in the absence of coeliac disease. Now, of course, taking gluten out of the diet and feeling so much better might be down to the placebo response and not due to relief from a genuine problem with gluten. However, even if this were to be the case, I personally have no issue with it. For me (and practically every patient I have ever met) it’s relief that is being sought, and it’s generally welcome whatever the precise mechanism through which it may have come.

Now, sometimes you’ll hear health professionals warning of the hazards of self-diagnosis. The notion here is often that ‘cutting out a whole food group’ is hazardous, and will leave people deficient in key nutrients. Like what, I would ask? What do grains like wheat and rye provide for us that cannot be obtained adequately and more healthily elsewhere? And it should go without mention, here, that grains such as wheat are rich in substances called phytates that impair nutrient absorption. Even if grains were über-nutritious (they are not), they do not necessarily give these nutrients up easily to the body.

I’ve found through experience that when someone takes out gluten-containing grains (or grains generally) from their diet, there is a good chance that they will experience a host of benefits in terms of health and general wellbeing.

Below is a screenshot of an amazon review for my book Escape the Diet Trap that came in today followed by the text from the review. In short, the reviewer had several non-specific symptoms which his GP (family doctor) suspected might be down to coeliac disease, but the test came back negative. He ended up doing his own research changing his diet and, if he took the advice in my book, would have excluded grains including those containing gluten. In a couple of weeks, he already feels much better and no longer feels ill.

It is impossible to say what, specifically, about his change in diet has led to him feeling better, or if it’s a placebo response or something else. However, if it turns out that this man has a sensitivity to gluten which was not picked up by standard blood tests, then I would not be at all surprised.

I have been following the advice of this book for nearly two weeks. Over the past couple of years, I have been putting on weight and have felt ill most of the time – extremely sluggish, sick, and dizzy. On some days, it has been difficult to get out of bed, let alone concentrate on work. My doctor thought I could be suffering from Coeliac Disease, but when the blood test came back negative, she was unable to suggest an alternative diagnosis. I chose to research matters for myself, and came across Dr Briffa’s book. It is early days, but I’ve started to lose weight. More importantly, I feel so much better. I’ve much more energy, and no longer feel ill. As a scientific layman, I don’t pretend to understand the science, but I intend to follow Dr Briffa’s advice for the long term.

References:

1. Rubio-Tapia A, et al. The Prevalence of Celiac Disease in the United States. The American Journal of Gastroenterology. 2012 Jul 31. doi: 10.1038/ajg.2012.219. [Epub ahead of print]

2. Biesiekierski JR, et al. Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial. Am J Gastroenterol. 2011;106(3):508-14

10 Responses to Coeliac disease often goes undiagnosed, but testing will not always identify sensitivity to gluten

  1. lupo 3 August 2012 at 7:48 am #

    Hello Dr Briffa!

    I’d also like to point your attention to http://www.biomedcentral.com/1741-7015/9/23/abstract . The paper concludes that gluten enteropathy and gluten sensitivity are two distinct clinical entities.
    Furthermore, in med school we were told that testing antibodies for alpha-gliadin and transglutaminase only has a sensitivity of 70%, which means that 30% of patients with coeliac disease get a negative result, yet are sick (specifity with ~99% is fine). An American lab found out the reason: Nearly every available test only looks for antibodies against one specific region (hapten) of alpha-gliadin, but the body is able to produce antibodies against virtually any other hapten of alpha-gliadin. The were able to push the sensitivity of their test way beyond the 95% range with some loss in specifity.
    From a biological viewpoint, many arguments made by Dr. “Wheat Belly” Davis, such as altered lectins, do make quite a lot sense as important co-factors in both diseases.

  2. Jacqueline 3 August 2012 at 9:29 am #

    2 years ago my coeliac blood test came back negative. I had visited my GP with following 3 weeks of diarrhoea. & he decide to test to exclude infection & coeliac disease. At that time I was eating a larger amount of pasta & bread than usual as we were living in our motorhome whilst our house was being done up. With negative test results after 6 weeks I decided to forego the pasta & bread and immediatly my gut returned to normal. A year ago we stayed with friends over a period of a week with toast & cereal breakfasts, sandwich lunches & pasta suppers. This time I ended up with 16 very painful mouth ulcers & upper abdominal pains. Since then I have avoided all wheat based foods, lost 2 stone on a low carb diet & at 65 have more energy & feel fitter than ever

  3. Ani 3 August 2012 at 6:22 pm #

    Great post John. I definitely do a lot better without gluten in the diet. So far my Rheumatologist has been reluctant to test me for Coeliac which is annoying but to be honest I just avoid the gluten an all is well. I have been diagnosed with lupus which also cross-links with many of the symptoms that are listed for coeliac, I have heard from other sufferers that they do better on a gluten-free diet. I think many doctors are a bit reluctant to suggest any diet changes. When I was diagnosed I was told there was nothing I could do to ease symptoms with diet – which was a totally idiotic thing to say, especially to me, a registered nutritionist with a passion for research. I spent the next 6 months reading research papers and wrote a 60 page review paper on diet and lifestyle changes that could be helpful to lupus sufferers…..no one was interested in reading the work! People diagnosed with lupus didn’t want to read what I had written or listen to me because I am not a doctor (AKA God to many people). I’m still glad I did it, I don’t take any medication and am very well 99% of the time with brief bouts of extreme fatigue.

    Anyway, back to my point – doing without gluten is not difficult and I think it could help many people, especially those with auto-immune issues.

    Thanks again
    Ani

  4. Vanessa 3 August 2012 at 7:55 pm #

    As a (nearly-qualified) student homeopath in clinical practice, I have had a number of patients who have had, as a side issue (ie not the symptoms they came to see me about), ‘IBS’ of some kind or other, usually exacerbated by certain wheat products. One had gone so far as to see a hospital consultant who said she may have a mild form of coeliac disease, although with certain gluten-containing foods she was fine. The pattern that I’ve come to see over the last 2 years is that the problem often seems to be related to yeast-containing products in particular and that there is usually no problem with flatbreads, pitta and so on. Sometimes beer seems to cause similar gut problems – again, a yeast connection. The patient with suspected mild coeliac disease is now able to eat products that she previously couldn’t following my treatment (the remedy selected wasn’t specifically to do with the IBS but the symptoms were included in my repertorisation).

    However, of course some people have a problem with all kinds of gluten-containing foods which seems to me to be on the increase. Is there some change in the types of wheat or methods of cultivation that might be contributing to this growth in bowel problems? Or might it be to do with other factors in our modern world (eg vaccinations, over-use of pharmaceuticals, corn syrup etc) that sensitise the gut in some way? Btw, I’ve been on Dr Briffa’s diet for about a month now – losing weight, feeling great – apart from some palpitations which I’ve put down to lower consumption of potassium-containing foods. I must admit I’ve started supplementing with potassium and these have now resolved!

  5. Greg Venning 3 August 2012 at 9:23 pm #

    The more I research nutrition as a clinician, the more I believe that avoiding grains (and so gluten) is useful for everyone, not just those with symptoms. Every one of my patients who has gone to zero gluten has had results beyond the digestive system. Less pain, more energy, better moods, clearer thinking, better performance… Those are just a few of the things people tell me they experience.

  6. nonegiven 3 August 2012 at 10:27 pm #

    @Vanessa
    http://www.wheatbellyblog.com/

  7. Graham 3 August 2012 at 11:18 pm #

    My 3 year old son had a negative celiac test, but I am 100% sure he has it. But the way I look at it, being allergic to grains is kinda like being allergic to cocaine or cigarettes – you’re better off without the stuff anyway!

  8. Cassiel 10 August 2012 at 1:32 pm #

    I had the blood test for celiac disease done last year, and tested negative. However, I had been gluten-free for over six months by then, and when I told the endocrinologist that I’d seen a lot of health improvements, he told me that the blood test wasn’t 100% accurate and that if I found I felt better eating gluten-free I should continue to do so. (I was actually glad to hear this sort of advice from a conventional doctor, since it seems so many still stick with the whole “diet doesn’t affect health, don’t cut out food groups” etc crap.)

    Going gluten-free had a huge impact on improving my health. Most of my life I’d suffered chronic digestion problems, gastro problems, gas so bad it would cause debilitating stomach aches for hours… and on top of that I had really awful chronic dandruff, so bad that it always looked like it was snowing on my shoulders and I had to brush it off every five minutes, and really bad eczema on my face, so that I was red, blotchy, insansely itchy, and covered in white flakes falling off all the time. As well as how dreadful and uncomfortable it all felt, it was hell on my self-esteem and therefore quality of life; I felt so self-conscious every time I stepped outside. No doctor or specialist was the least bit helpful in sorting it out, and most skin care products exacerbated the problem. These problems came on in my early teens and tortured me ever since. (I’m 35 now.)
    When I went gluten-free, all of my stomach issues resolved in just a few weeks. On top of that, my dandruff and eczema cleared up for the first time in my LIFE. Over the next few months my scalp and my face finally had the opportunity to heal. Now a year later my skin is almost clear, aside from some scarring which I am hoping will fade in time. (And after 20 years of being in such poor condition, I’m not really surprised I have a lot of scarring.) About a month ago I was talking to an acquaintance, someone I’d only met about 4 or 5 months ago, who said that she always thought I was 10 years younger than I really am because I have “such nice, clear skin”. I was floored. Nobody would ever have said that to me a year ago.
    Whenever I mistakenly eat something with gluten in it nowadays, I always know it because my face flares up immediately; there are a couple of spots where the red skin and flaky, scaly patches emerge. I get stomachaches as well, but my face is the stronger reactor to gluten. My scalp gets dandruffy too, if I ate enough of it.

    Btw, I’ve been chronically suffering from iron-deficiency anemia my whole life, too, often making me too tired to do much beyond just working or studying or whatever was my main focus. Doctors always just shrugged and gave me iron supplements. My iron is still low now but I’m hoping that maybe my body will learn to get better at absorbing it without wheat in my diet. I’m guessing it takes awhile, though. That said, the same endocrinologist who was okay with me eating gluten-free didn’t even comment on my low iron count, saying “everything looked fine” when my ferritin level was at 19. Considering I was consulting him about a severe and chronic fatigue problem, which is often associated with low iron, I’m pretty unimpressed.

  9. Kevin eakins 27 August 2012 at 12:00 am #

    Dr Jonathon Wright of the Tahoma clinic in Seattle suggests that there is a secretory IgA trst avaialble from http://www.enterolabs.com which he and his staff have found to pick up gluten intolerance as opposed to and as a condition apart from ceoliac disease.

  10. Batwench 7 September 2012 at 7:18 pm #

    I too had many ‘negative test’ results over the years. It wasn’t until I followed an exclusion diet, free of Gluten, that my very understanding GP diagnosed me with being a Coeliac. However, all of my blood tests, over a 10 year period had all come back with very high anti-body numbers. As my Dr. said II had done it the old fashioned way”. So if you keep on getting negative results, don’t give up.

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