Gluten sensitivty in the absence of coeliac disease exists. It really does.

Regular readers of this blog will know that I’m no lover of commercial bread. It is generally a food that is very disruptive to blood sugar levels, and its prime component is wheat, which in practice appears to elicit adverse symptoms in quite a significant percentage of people. Some people have wheat sensitivity because they are sufferers of coeliac disease – sensitivity to the protein gluten which can cause a flattening out of the gut wall and cause a variety of symptoms including fatigue, neurological symptoms and digestive discomfort and bloating.

Standard tests for coeliac disease include gut biopsy (looking for characteristic flattening of the gut wall) and blood tests looking for specific antibodies (known as endomysial and tissue transglutaminase). However, many people who claim to react adversely to wheat who come to be tested for coeliac disease turn out to have normal test results for coeliac disease as well normal test results for wheat allergy (immune reaction to wheat caused by what are known as IgE antibodies). So, individuals complain of, say, digestive discomfort and bloating when they eat wheat, but ‘all the tests are negative’. This phenomenon has often been used to paint those who believe they are wheat-sensitive as neurotic and gullible (perhaps imagining they have a problem because they read about it in a woman’s magazine).

Today, the British Medical Journal published an interesting article which asks if gluten sensitivity in the absence of coeliac actually exists [1]. In other words, can some be sensitive wheat (or other gluten-containing food such as barley or rye) but not have coeliac disease (or wheat allergy)?

The authors of the piece refer to a study (due to be published) in which 920 patients with symptoms of irritable bowel syndrome (e.g. abdominal discomfort and bloating) have wheat (as well as other foods including cow’s milk) removed from the diet [2]. On blind challenging with food (participants did not know what food they were being challenged with), a full third of patients responded adversely to wheat and not with placebo. As the authors say:

The evidence therefore suggests that, even in the absence of coeliac disease, gluten based products can induce abdominal symptoms which may present as irritable bowel syndrome.

As a result of this and other evidence, non-coeliac gluten sensitivity was recognised earlier this year by a group of 15 international experts [3]. Common symptoms that are attributed to this condition include “intestinal symptoms such as abdominal discomfort, bloating, pain, and diarrhoea (also consistent with irritable bowel syndrome) or with a variety of extra-intestinal symptoms such as headaches, “foggy mind,” depression, fatigue, musculoskeletal pains, and skin rash.”

The authors conclude:

For patients who report wheat intolerance or gluten sensitivity, exclude coeliac disease… and wheat allergy…. Those patients with negative results should be diagnosed with non-coeliac gluten sensitivity. These patients benefit symptomatically from a gluten-free diet. They should be told that non-coeliac gluten sensitivity is a newly recognised clinical entity for which we do not yet fully understand the natural course or pathophysiology.

I am almost speechless at the balanced and honest nature of this account of gluten sensitivity: it recognises the limitations of medical testing and admits there’s things we simply don’t know or understand. I have a feeling there’s going to be plenty of people reading this who will feel inclined to shove these findings in the face of a practitioner who told them their tests were negative and that their wheat sensitivity is imagined and ‘all in their mind’.

References:

1. Aziz I, et al. Does gluten sensitivity in the absence of coeliac disease exist? BMJ published 30 November 2012

2. Carroccio A, et al. Non-celiac wheat sensitivity diagnosed by double-blind placebo-controlled challenge: exploring a new clinical entity. Am J Gastroenterol (forthcoming).

3. Sapone A, et al. Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Med2012;10:13

32 Responses to Gluten sensitivty in the absence of coeliac disease exists. It really does.

  1. John Walker 30 November 2012 at 7:11 pm #

    There’s more than enough evidence to condemn bread. It’s about time the ‘authorities’ got their act together and realised this fact. I am trying to give up bread. The only problem is, with what do I mop up my plate, after I finish my bacon, eggs and tomatoes?

  2. Connie 30 November 2012 at 7:37 pm #

    I tested positive for the anti-gliadin antibody which is supposed to give a idea if someone has gluten sensitivity. However, I found I had a sensitively even to some of the approved grains such as rice bread. Maybe I should avoid grains all together until everything calms down. Meat is approved, but I feel like I’m choking when I eat meat. A Vegan diet without bread is basically veggies, beans and some fruit as I have to watch the sugar. I wonder if there is an approved liquid diet that actually tastes good that doesn’t involve juicing equipment that I could go on for a while?

  3. Janet 30 November 2012 at 8:18 pm #

    I’m glad this knowledge is being pushed now – it can no longer be ignored. Aziz was co-author on a previous paper (Evans KE, Aziz I, Sanders DS, Coeliac Disease, Irritable Bowel Syndrome and Gluten Sensitivity, Gastroenterology Today, 2012: 22(3)), which was put into my hands by a friend – who is a doctor! As a nutritionist I have tried to help a number of people to adopt a gluten-free diet only to have their doctors tell them they’re wasting their time. I’ve been referring them to the above paper, and now there’s even more evidence – great.

  4. Vanessa 30 November 2012 at 8:33 pm #

    Firstly, the medical obsession with gluten testing for coeliac disease seems to blind everyone to any other possible wheat-related substance that may be causing problems and secondly, we are eating an awful lot more wheat products than we were, say, 40 years ago when I was young. I read somewhere recently that modern wheat has another protein, gliadin, that wasn’t around in traditional wheat species. One very worrying piece of information I learned the other day was that non-organic wheat is routinely sprayed with insecticide prior to harvest to get rid of any annoying bugs! Finally, many of my patients who come to me for homeopathic help say that their problem is more to do with leavened wheat products, not wheat per se.

  5. Bill 30 November 2012 at 10:29 pm #

    I’ve been gluten free for 5+ years now and I’m convinced that my alopecia areata was due to gluten sensitivity. Also osteoporosis in my right elbow has drastically improved. The damage has been done, where I will never be able to fully straighten the arm again, but I have no inflammation in the joint anymore.
    It took 4 years of gluten avoidance to truly gain the benefits.

  6. Jayney Goddard 30 November 2012 at 11:42 pm #

    Superb article yet again John, many thanks for bringing this to our attention. I have long suspected that some of my patients have a genuine sensitivity to wheat based foods – syx also include auto-immune type problems e.g. Joint pain, skin rashes etc. aside from the IBS syx. Anyone else noticed this?

  7. Helen 30 November 2012 at 11:44 pm #

    Hallelujah!! at long long last. I have been sensitive to bread for years but repeatedly told I do not have coeliac disease and that it maybe a somatic disorder. Nonsense, with an hour of eating bread -any sort- sliced white to best Home made organic stuff- my fingers swell up, I get fuzzy heads, feel bloated – had 2 gastroscopies and 2 endoscopies this year – NOTHING. I asked the consultant if it could be a bread allergy and described my symptoms – he just looked puzzled. He did trouser over a £1000 in various fees, so why should he want to find a simple solution like giving up bread. He kept advising me to have a balanced diet, “5 a day” , low fat, even though I KNOW that only a broadly paleo diet works for me. I will be carrying this piece of research around with me. Ironically these problems first started when I was on a PCT Board and having masses of sandwich lunches. It would make you laugh if it wasn’t serious.

  8. Magdalena Rathe 30 November 2012 at 11:53 pm #

    I would like your opinion on Tropical Sprue. My husband was diagnosed with probable celiac disease by one doctor (based on blood tests not conclusive and chronic inflamation biopsy) and with tropical sprue by other doctor.

  9. Alex Gazzola 30 November 2012 at 11:54 pm #

    This is a fascinating area of research, but I think it’s important to distinguish between ‘gluten-based products’ and gluten itself. Could it be some other component of bread / pasta causing – at least in part – the problem? Wheat starches? Non-gluten wheat proteins? Yeast in bread? Would be interested in your views on whether you think these possibilities need to be excluded.

  10. wendyb 1 December 2012 at 12:54 am #

    This rings true for me. I can cope with spelt bread and other grains but have clear reaction to wheat gluten. So many of my symptoms have been suggested as IBS or even menopause. Interesting that rashes are mentioned. I had thought it was menopause or stress or caffeine or alcohol but couldn’t remember when I’d had any. Perhaps it was gluten. I find the longer I go without gluten, the stronger the reaction when I inadvertently eat some. Will be looking into this a bit more. Glad to have stumbled across this via Twitter feed.

  11. TokyoMum 1 December 2012 at 1:00 am #

    What about sourdough bread made with with real sourdough starter, a natural levain, instead of using commercial yeast to make bread? This study http://www.ncbi.nlm.nih.gov/pubmed/20975578 shows that patients with celiac can eat pastry/sweet bread made with wheat that has been long fermented to render it to be gluten free. Perhaps the use of yeast could be partly responsible for people to develop celiac, not wheat/gluten in itself? I wonder if folks with gut issues have the same problems eating wheat yeasted bread as with eating pasta.

  12. rox 1 December 2012 at 1:09 am #

    This sounds promising. I have kept my 7 year-old daughter off gluten for around 18 months – as well as tummy problems she had irritability and cried every day. If she unwittingly has gluten now, the mood swings and tearfulness return. Without gluten she is like a different child (and rarely cries). My husband has tummy issues on gluten and now he is gluten free; I get joint ache in my fingers if I eat gluten. I’ve never discussed this with my GP because I imagined I’d be given short shrift.

  13. Dr. Bill Wilson 1 December 2012 at 1:09 am #

    This is one of those “duh” moments. We have been seeing this in our patients for years. It’s always nice when research catches up to common sense.

  14. fredt 1 December 2012 at 2:00 am #

    For more information on wheat Google “wheat belly”

    And for the vegan, vegetarism is a religion, not a rational diet.

  15. Agate Karevoll 1 December 2012 at 2:53 am #

    Great!!! Dr. Kharrazian suggests that the approach to Coeiliac disease is rather dated and could do with revisiting. He mentions 3-4 other allergens in gluten which are not tested for.

    Last year a study of Hashimoto’s patients were published, on average they needed 50% more thyroxine than other hypothyroid patients, after on average 11 months without gluten their requirement of thyroxine had reduced to the same as the other patients. Could it be inflammation and reduced absorbtion?
    Andrew Marr’s history program said that when started
    growing grain 10 000 years ago we lost stature and developed atoimmune diseases. He thought it was overwork which caused it but I have another hypothesis.

  16. digby 1 December 2012 at 3:13 am #

    After 40 years of migraines I went off wheat after reading “Wheatbelly,” and have only had a couple bad headaches in around five months; that for me was miraculous. I never went anywhere with two prescriptions for migraines, now I still have the habit but haven’t need them. Plus, my spouse and I both noticed some incipient arthritis issues went away. I know gluten sensitivity is real.

  17. CHERYL 1 December 2012 at 5:39 am #

    I had severe gastritis, confirmed on endoscopy, and arthritis in C4 and C5 which meant I could barely move my neck without pain. Since eating a gluten free diet, I have not had gastritis and my neck is totally free of pain. The eczema that I had on my face has cleared up. I challenged my immune system by trying gluten again and the symptoms returned. I will never eat gluten again.

  18. Sandra Brigham 1 December 2012 at 11:01 pm #

    And then we can go a step further and do studies on all grains and their myriad anti-nutrients, and then starches. Self-diagnosed as gluten-sensitive, as opposed to accepting PCP’s psych referral, I gave up gluten and then all grains. Even preparing my own long-fermented sourdough bread with a sourdough starter caused symptoms. Migraines, ataxia, left leg neuropathy, among many other ailments, went away with grain avoidance. If I have any grain or too many carbs/starches, the neuopathy comes back.

  19. TokyoMum 3 December 2012 at 12:38 am #

    I think we need to be more careful when we say that starches are harmful. When I discovered Paleo, I shun all carbs and starches BELIEVEING that they are truly harmful, until I discovered that not all starches are bad after reading Paul Jaminet’s The Perfect Health Diet, and after reading Dr. Stevan Linderbeg study on the Kitavan’s diet (mostly starchy tubers and fat from coconut). I slowly reintroduced safe starches back and found that they are IN FACT beneficial to me. And then I discovered Sweet Potato Power by Ashley Tudor. My energy is better, I lost weight, better mood and less sweet cravings. My tummy is flatter too, which is a plus! And then I reintroduced wheat and gluten into my diet in the form of long fermented sourdough bread that I make at home daily. I was waiting for some reaction to happen but so far I’ve had no issues eating wheat/gluten this way and will only eat wheat/gluten and this way.

    While gluten may be the culprit of many health issues, we need to have a more understanding of preparation of food to render it safe to eat. This is the essence of ancestral and traditional diet of the world, at least to me this way of dietary lifestyle is working just fine and I feel much healthier, without religiously following a low carb, high protein or high fat regime.

  20. Vanessa 3 December 2012 at 7:26 pm #

    Just wondering if anyone else knows about the information I heard from a reliable source, regarding wheat being routinely sprayed with pesticide before harvest? Nobody else seems to have mentioned this. I am just aware that the phenomenon of wheat intolerance appears to be more common these days……(along with asthma, eczema, autism and all the rest!) I’m sure our immune systems wouldn’t react kindly to overdoses of pesticides and may cause a lot of the problems, or am I wrong?

  21. Anna Hatton 5 December 2012 at 12:06 am #

    Giving up gluten has improved my eczema 80% and relieved the itching which was getting unbearable. I have been gluten-free for two months and my skin is improving all the time. I was prepared to try anything to stop the discomfort – nothing else has helped (dairy-free made no difference) – so I shall be sticking with it. I think the protein in gluten aggravates certain allergies and this would be an interesting area for further research as allergic conditions are now so prevalent.

  22. Chris 5 December 2012 at 2:10 am #

    Agate did well to spot that howler dropped into Andrew Marr’s History Of The World (BBC One – 1/8 ‘Survival’, broadcast 12.09.2012).
    The narrative did acknowledge the entry point of grain based agriculture around 10,000 years ago and did indeed mention that the archaeology of these times indicates reduced stature along with tell-tale signs of arthritis etc. in old bones. And, yes, the narrative did ignore the association these changes mat have with the alterations to the diet.
    Considering the effort that went into the visual aspects of this series it is shame that the factual reporting seems to have been dumbed-down. Personally I’d have appreciated it had it been more informative at the expense, say, of a little less in the way of visual glamour. That first episode attracted an audience of 3.85 million but 1.25 million of them resisted the temptation to stay with the rest of the series.

  23. MARYDVM 6 December 2012 at 5:00 am #

    re pesticides in grain. Most grain storage facilities are sprayed with pesticides before being filled.Pesticide treatment of stored grain can also be sprayed on as the harvested grains are funneled into a grain silo, or applied to the top as a surface dressing. The longer the grain is being stored, the more chemicals will be applied.
    http://www.ca.uky.edu/entomology/entfacts/ef145.asp

  24. Rita 7 December 2012 at 8:48 pm #

    It is comforting finally to have confirmation of what I’ve known about myself for 30 years. I’m allergic to wheat (and rye) but test negative for coeliac. Three decades ago I had to diagnose myself through trial and error, after visiting numerous doctors and getting numerous tests. I was ultimately pointed in the right direction by a chiropractor who suggested it might be a food allergy. My symptoms are different from the ones mentioned in the article, but they are immediate and predictable: first headache, then sore throat, and then flu-like symptoms that last for a couple of days. Before I was diagnosed, I had a sore throat that lasted for an entire year.

  25. Jessica 8 December 2012 at 9:37 pm #

    Eighteen months ago I read Wheat Belly. At the time I was barely able to walk and had two spinal MRIs revealing that every disc in my spine was herniated to one degree or another. It was suggested I have a total spinal fusion in order to continue to walk and reduce pain. Also, my husband had severe IBS and was severely bloated in the belly. We both decided to change what we thought was a healthy diet: low fat, whole grains, starch laden high carb diet. We not only up wheat but we reduced our carb intake to less than 30 grams a day and went totally wheat free, starch free, sugar free, all grain free. Our lives have changed dramatically! I am no longer in pain and my blood sugar is normal for the first time in years without drugs. My husband lost 50 pounds (I was already slim), lost the belly, no longer has IBS symptoms of any type and just two days ago had the first normal colonoscopy and endoscopy he’s had in 10 years. His Barrett’s Esophagus is GONE!!!! Yes, this is a strict way of eating.

    We consume grass fed meat, organic eggs, organic (when possible) non-starchy vegetables, coconut oil, coconut flour, almond flour, moderate amounts of nuts. Cooking is easy. Eating out is easy. Our recent blood tests were all perfect for the first time in years, my HDL WAS 79, his was 75. We eat lots of healthy fats, moderate protein, moderate veggies and rarely are hungry. We only eat when hungry, an odd phenomenon for us both, former grazers and over eaters. Thus, some intermittent fasting is involved. We feel amazing.

    As a result of this massive life change we are leaving the US in a little over 3 weeks to travel the world for the next 5-10 years. My husband retired 6 weeks ago. We are in our 60′s. We started writing a blog about all of this last March, the food, the illnesses, the preparations for travel. We have over 10,000 hits as of this morning. People, including seniors are looking for answers. We hope we have inspired a few. As we will travel the world, we won’t eat the bread, the pastries, the pasta on the 8 cruises we have booked. We’ll continue to try to avoid chemicals in our food as much as possible along this journey. Two years ago, I could barely walk to the outdoor mailbox. Now, we’re traveling the world.

    Thank you Dr. Briffa, you have been an inspiration to us as well. We keep watching for the Kindle edition of your book at Amazon. If anyone is interested in our journey, please visit us at: http://www.WorldWideWaftage.com (waftage means to travel gently by sea or air).
    Warmest regards,
    Jessica

    • Leonor 14 February 2014 at 12:23 pm #

      Hi Jessica! I was absolutely amazed when I read your post. I also have serious spine issues and lots of pain and I am considering to remove all gluten and grains from my diet to see if there’s any correlation. I have read other testimonials from people who, like you, experienced a decrease of pain levels. I would like to ask you how long did it take for you to star noticing some difference. Thanks in advance!

      • Jessica 15 February 2014 at 11:16 am #

        Hello, Leonor,
        How wonderful that you replied to my post from some time ago! Dr. Briffa certainly has been instrumental in my success along with a few other medical professionals espousing this way of eating.

        To answer your question: It took three months of very strict adherence to the low carb, sugar free, grain free, starch free way of eating to notice a difference. But, wow! The difference was astounding, seemingly happening one morning when I got out of bed.

        I put my feet on the floor to stand, gingerly as usual, to find that I had no pain for the first time in over 20 years. I thought it was a fluke. Getting up I went about my usual morning tasks finding that I could shower and dress for the day in half the time. Throughout the day, I continued pain free, fearful of telling anyone, thinking it was an anomaly and the next day the pain would return.

        That was 2 1/2 years ago and the pain has not returned. Yes, I can tell my spine and neck are still damaged but I have no pain. I haven’t started bungie jumping but my husband and I are now traveling the world for the next several years, impossible three years ago when I couldn’t sit for a two hour flight.

        We are chronicling our travel experiencing while eating this way. I recently made it through three months in Tuscany, Italy and never let a taste of bread or pasta cross my lips. If interested, we have tons of recipes and photos of foods we eat on our website at: http://www.worldwidewaftage.com

        On the 28th, we’re leaving to spend two and a half months in Marrakesh, Morocco in a house with a cook. I prepared a list of all the foods I can and can’t eat including meal suggestions for the cook. I’d happily email it to you.

        I write about alternative meals and snacks in detail so perhaps this will be helpful. You can send me your email address if interested to: jessicablyman@gmail.com
        or if you prefer, make a comment on my site at the end of today’s post where I mention our wonderful “bread less” sandwich with a link on how to make it with photos.

        Hope this helps.
        Best regards,
        Jess

  26. Martin @ Leaky gut research 4 January 2013 at 7:19 am #

    I have tested negative for celiac yet reacted to gluten so I quit. Cured psoriasis I had for 30 years as a side effect.

  27. Lily 15 September 2013 at 4:43 pm #

    My father (not blood related) has Celiac’s disease and was quite put out when I eliminated gluten from my diet, as he believed only his condition was a ‘proper allergy’ and mine was a fad. I had already turned vegan, which cleared up many conditions, and drastically reduced my autoimmune disorder, but still not a 100%.Since giving up wheat/ gluten I can breathe better, sinuses have completely cleared up, my skin has cleared up, no brain fog, less depression, feel stronger, less tired, no diarrhea or constipation, no bloating, I feel like I’ve got a different brain I can think straight, less joint pain, my skin looks younger! I had tests done for Celiac’s which came back negative. I too used to think all these ‘sensitivities’ were from paranoia, until I gave up gluten and it was like night and day with how my I felt, it was like having a new body. I even had gluten withdrawals and got very depressed and agitated, and like I had the flu. I think people should listen to their bodies and do what they feel is best for them. I would urge anyone who’s given up dairy/ wheat/ gluten to take turmeric and aloe vera juice to aid recovery and boost the immune system.

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