Can you be wheat intolerant but tolerate gluten?

I inadvertently worked out that I'm probably intolerant of wheat about a year ago when I went without solids for a week due to a dental problem (symptoms: persistent mouth ulcers, excema and itchy nose, run down, indigestion, bloating). I now use oats, barley, rye, buckwheat, corn as substitutes and keep these to meuslie and occassional pasta and crumbles - I don't tend to eat GF anything or pre-prepared (unless I'm out).

Is there such a thing as wheat intolerant and not gluten intolerant?

25 Replies

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  • Yes. My niece and brother are wheat intolerant but not gluten intolerant - they can't eat food my coeliac niece can eat due to the codex wheat, but are ok with other 'gluten' bearing foods, rye, oats and barley. I can't tolerate any form of wheat products or any of the oats, barley, rye group.

  • How weird........I just came on here to ask that exact question! lol

    I have just had an ige test which shows i have a wheat allergy, which i assume means i can't eat bread that contains gluten free wheat?

  • Hi Paulb44, I've recently been through a similar experience to you and had an Ige test that showed up as allergy to wheat. I kept getting urticuria every time I ate wheat as well as a host of other coeliac-type symptoms. However blood tests show I don't have the antibody for Coeliac (I refused the gastroscopy being a coward!) and when it came to the allergy skin test, although I reacted to wheat, it wasn't enough to suggest true wheat allergy (which is apparently very rare), although my grass allergy result was very severe. Apparently this is known as cross-reactivity, ie, the body thinking wheat/gluten is grass (they are from the same plant family). So I've been labelled gluten sensitive or intolerant.

    This is a seemingly fairly unresearched area (bar the University of Maryland, USA), but from my own recent experience I can tell you since being gluten/wheat/barley/oat free I haven't had urticuria (apart from when I mistakenly ate gluten containing food) and my irritable bowel, chronic fatigue, memory-fog and joint pain have eased amazingly.

    Initially I was still getting a very upset stomach, but took Lynxcat's advice and simplified my diet while my body is adjusting, so I stay away from a lot of the "free from" foods. Interestingly Corn/maize and soya containing foods often seem to cause me digestive problems and a lot of the "free from" food is full of them. Corn is from the grass family and like oats apparently have their own form of gluten, so I don't know if this is related to the cross-reactivity again and might be helpful for you if it turns out you have true wheat allergy or intolerance.

    I also have thyroid disease and that is very closely related to Coeliac and gluten related issues. There is a school of theory that gluten is a cause of many cases of thyroid auto-immune disease. The medical fraternity aren't so joined up in their thinking, but with Coeliac, allergy and auto-immune diseases generally all being to do with the immune system, it seems wise to keep it "calm" via diet, vits and minerals that support it. I've been attempting to stick to high proteins and veg and only adding in easy to digest grains like rice and millet. Orgran do a great millet and rice pasta and Dove's farm do a cereal and buckwheat pancakes are pretty good too.

    Anyhow, sorry if I've rambled, but hope some of it will help you! :-)

  • Hi, does that mean you are unable to have even a trace of wheat in food, if so its like being coeliac but having to pay for bread etc.,

  • HI Asborne, Yes, that about sums it up. I seem to get all the same symptoms if I eat gluten-containing food, except I don't know if there's any gastric damage - if I am just gluten intolerant, apparently there shouldn't be, but I never had the endo. No prescription for food either. Thank goodness for amazon subscribe and save. :-)

  • Never heard of this before. Does a wheat intolerance cause the same damage to the small intestine (SI) as gluten? If it is possible for the SI to be adversly affected by one of the dreaded wheat, barley, rye, but not the other two; then for asymptomatic coeliacs they could be misdiagnosed if their gut is only affected by say wheat and not rye or barley.

  • Wheat allergy/intolerance can cause all sorts of symptoms, but doesn't cause the damage to the villae or the increased intestinal permeability that you get with coeliac disease. Someone posted a research paper about that on here recently.

  • Thanks poing, for clearing this up

  • Hi Wheatbird, Wheat causes an array of problems. Some are the same as those of gluten intolerance and coeliac disease, some are similar but not quite the same and some are totally different. As with gluten - wheat will affect individuals in different ways. Many wheat intolerant people have regular headaches. It is known for causing stomach/intestinal bloating and a feeling that a person wishes to evacuate their food even after they have been to the toilet a person may also feel very full not wanting to eat. It tends to cause very loose stools which can resemble cow pats in many individuals as well as diarrhoea as well as constipation. Many people with wheat intolerance suffer with serious IBS problems and stomach cramps. For those people who develop wheat allergy they may sometimes find their insides very 'windy' or 'gassy.' A person may experience palpitations after consuming food containing wheat. Wheat can also bring on other types of allergy such as asthma, eczema, dermatitis, dry skin patches, itchy scalp and a type of flakey dandruff. People prone to problems with wheat often experience indigestion or heartburn with bouts of nausea. They may develop a cough, their throat may swell, they may sometimes feel it is difficult to breathe. It is often the wheat germ that causes most of the problem. The lectins in wheat often cause inflammation especially to people who are either allergic to it or intolerant of it, this may lead to joint pains. The wheat lectins also may bind with white blood cells which can then activate them causing them to attack healthy areas of the body. Wheat can produce overgrowth of yeast within the intestines, candida. Wheat has long been associated with increased amounts of fluid within the brain and this may be more probable if a person is allergic or intolerant of it.

    There are a couple of forms of wheat allergy but one is known as Wheat Germ Agglutinin or WGA for short.

    Here is a site that explains it quite well and one that you might like to bookmark for future reference:

    towncenterwellness.com/anno...

    (I used to think that I had wheat allergy several years before being diagnosed with Coeliac Disease and so I learnt quite a bit about the symptoms. In many ways some are very, very similar to Coeliac Disease. To exclude wheat from the diet is often as difficult as excluding gluten as it is often in small quantities under various names and until you are certain about which things are all right and safe, I would say follow a diet for Coeliacs with the exception of eating barley, oats and rye. Remember also that wheat starch is used in most lipsticks, eye shadows and mascaras as a filler - so these are best avoided. You should be able to purchase safe ones from greenpeople.co.uk/ .. they list their ingredients on their site but if you prefer ones that you are currently using then it is best to get assurances that they are safe and free from any wheat derivatives. I hope that this is helpful to you.)

  • Hi Lynxcat

    That reply of yours has got me thinking.

    If it is wheat intolerance/allergy as oppossed to Coeliac, would the blood test for ttga and EMA still be positive?

    I'm only asking as I have had an awful cough for 20yrs, had all the std lung tests & they were clear & they disgnosed idiopathic cough (which means they didn't have a clue why) & in the last 5 yrs it had got worse, along with cow pat diahorea, bloating, aching joints & dreadful tiredness. So after no help from dctrs, decided to try & investigate myself. Cut out dairy a year ago, felt a bit better, cut out gluten totally 9 mths ago in March & feel hugely better, aching gone completely, cow pats only now & again & cough slowly getting better each week.

    However, Dctr did refer me to Immunologist at the same time I cut out gluten & to cut a v long story short, even 5 months after cutting out gluten my ttga & ema was positive (but only a score of 14), they referred me still for Endoscopy & understood why I didn't want to go back on gluten & that was done 2 weeks ago. Managed to get results before seeing consultant again (as no appt free until end of Jan) & hugely pleased as there is no villi damage.

    However, now unsure as to whether it is coeliacs & the damage repaired quickly or whether something else would trigger the positive blood tests? Could it be wheat instead of gliadin?

    So frustrating when you can't see the consultant for 3 months to discuss the issue!

    Having said that, not really tempted to go back onto gluten even if consultant says it's not coeliacs, as don't want to go backwards in how I feel!

  • No, I don't think wheat allergy or intolerance would show up in the coeliac tests. The tTG and EMA tests are markers of autoimmunity, and it's unusual for them to be raised in people without coeliac - the false positive rate is only a few percent I think.

    You don't truly know if you are coeliac, however, since your gut may have had a chance to heal. In a way it doesn't matter as the treatment is the same whether it's intolerance or coeliac - no gluten.

  • Hi Poing

    Yes you're right, regardless of what stage it's at - intolerance or coeliac, It's no gluten for me & in all honesty, since I feel much better, that's what I'll base it all on & I consider myself extremely fortunate.

    Thankyou

  • Hi Virgolizzy, The problem is we can be both coeliac and allergic to a variety of foods. Your doctor will affirm if you are allergic to wheat and remember it is an allergy test they usually do which means you can still be intolerant of it. Allergy as a word defining a problem with food means that it is potentially life threatening. In other words a person may go into anaphylactic shock if they consume even a small amount of a particular food item. An intolerance on the other hand means the body cannot handle, process, digest, etc a particular food and this will then lead to unpleasant side effects. It appears that people that have any problems with digesting gluten are susceptible both to a whole spectrum of allergies and also food intolerances.

    On the other hand, there are a growing number of people that become allergic or intolerant of a variety of foods without developing coeliac disease.

    I should ask your doctor if you could have a wide spectrum of tests to find out which food items you are allergic to not only wheat but also including all of the grains, soy, corn, milk, peanuts, etc. That way it will give you a little more indication of potential problems.

    Remember however that if you are indeed gluten intolerant it will not show up on any test results.

    If you have time have a look at the following links - the first is from Allergy UK:

    allergyuk.org/common-food-i...

    glutenintolerant.co.uk/

    glutenfreenetwork.com/faqs/...

    bbc.co.uk/health/physical_h...

    nhs.uk/conditions/food-alle...

  • Hi Lynxcat

    Thanks for replying & the link to all the sites.

    My doctor wouldn't do any food allergy tests, as she said there were far to many foods to test & which ones would she look at! Or in other words, they didn't want to pay for it on the NHS.

    Anyhow, that's why I started to look into it all further myself. Privately I had skin prick allergy IgE tests done for all the common foods & it was all negative.

    I then had IgG Intolerance tests done on 200 foods & dairy & gliadin came out on top & wheat was borderline. So that's why I came off those foods & then eventually the appt with the Immunologist turned up the positive ttga & ema blood tests.

    In any event, whether it's eventually classed as Coeliac without histology or gluten intolerance etc, the result will be the same - no more gluten & I will also avoid wheat & dairy!. I will continue with my food diaries to make sure nothing else is still lurking in the background!

    Incidentally after my positive blood test results, I sent my mum to her doctors to get tested,as she hasn't felt well for years on end & guess what - her results were sky high & she is now waiting for her Endoscopy, but she is continuing with her gluten until after the test, so there won't be any grey areas.

    Thanks for all the info it's really helpful.

  • My mother had many conditions which I now look back on and wonder. It would be so much better if a tighter watch was placed on people who visited their doctors more than once and that they were tested both for coeliac and also for at least wheat. I wonder how many more cases would come to light if this were the standard.

    My particular condition started with what I thought was a problem with wheat. It eventually turned out many years later as coeliac disease. My daughter has problems with gluten - she is physically sick when she has even the smallest amount but as yet her tests for coeliac disease has come back negative.

    I worry that the more I hear and read regarding both coeliac disease, gluten intolerance and wheat allergy and/or intolerance appear in many cases to be an almost 'do-it-yourself' health option. There are also many who think that there is no way that something like a loaf of bread could possibly be the cause of their constant disruptive bowel and weekly pounding head .. with goodness knows how many days either lost from work or people being so under-the-weather that they never stand a hope of reaching their optimum potentials at school, college or in the work place!

    I should return to the doctor and advise that you believe you have a problem with wheat and ask if you can have the blood test for this alone. Why do I say this, well so many medicines, drugs, etc contain wheat starch and it needs to go on your medical records if there is a potential health problem with prescribed medicines that contain it. After all, this is not a luxury nor is it a flippant request it is something that affects your health.

    You might find the following of interest too:

    annasavanna.blogspot.co.uk/...

    boingboing.net/2011/10/26/t...

    wgin.org.uk/

  • P.S.

    Oops!! I also meant to add that it is worth checking out make-up items when they are on the lips or near to the eyes. Example: lipstick/lipgloss, eye shadow, mascara, eyeliner ..... these often use wheat starch as a filler. If you have particular favourite make-up items then it is best to write and ask whether they contain any wheat contents (gluten too if you wish to avoid it).

  • Hi, I realise you wrote this 3 years ago but I have just had similar results from an intolerance test that showed gluten (gliadin) milk and yeast as most reactive, and wheat, buckwheat and lentils as borderline. I can't seem to find much info on the Internet to explain how you can be intolerant to gluten but only borderline wheat and fine with rye and barley? I was under the impression gluten was in rye and barley so I'm completely confused. Just wondering if your able to shed any light? Thanks 

  • Wow. If I was thinking wheat may be a bit unhealthy then reading that article has more than confirmed this. Even if the warnings in that article are disproportionate, it is an interesting perspective and a useful historical and chemical analysis. (I woud provide a succinct analysis of the biochemistry in the article but have to go down the shops shortly :) ha ha.)

    Many thanks for this information Lynxcat - a very resonant description of the symptoms I used to have - food for thought.

    Wheatbird.

  • Hi Wheatbird, This is especially as you are interested in wheat. There is a new major wheat allergen that has recently been discovered. As you are now wheat free, it will not be a concern to you but I thought it may be of interest.

    ncbi.nlm.nih.gov/pubmed/229...

    jimmunol.org/content/189/6/...

  • After sticking to gluten free foods, now seem to be getting abdominal discomfort if corn maise is in ingredients as in Genius bread, Dietary special cracker bread. Having more problems now than before diagnosed

  • Hi Asborne

    Have a read of Lynxcat's blog on 23/11/12 headed Gluten Grains that will help clarify why you may be getting these reactions. It's not unusual apparantly to get intolerances to all the other grains that contain different types of gluten. Also look at trulyglutenfree.co.uk

    Good luck

  • I have a wheat intolerance as well as being coeliac which means I'm unable to have any of the codex products.

  • That's a really good question - one I'm facing at the moment. For the last year I've been having really bad gastric issues - bloating, feeling full when you're not, constipation, diarrhoea, and general malaise - and also skin/yeast problems - already have eczema and have a history of asthma. It's only fairly recently have I worked out that it always happened after wheat or gluten - I ate croissants or ciabatta every day, and of course when I thought it was lack of fibre I switched to muesli and non-GF granola.

    I've been tested for all the usual - bowel cancer, coeliac, etc. and come up with zero. My doctor offered IBS until I worked out after a large pasta meal that it might be that. Switched to GF/wheat free foods and it's like night and day, feeling like I did over a year ago - the background 'fuzz' is gone, and I don't have to take peppermint oil like smarties anymore, only maybe if I know I'm going to have a little wheat (I think I'm more on the sensitive side than rabidly intolerant of any - I can eat a little wheat products, but it's like a trip, slightly too much, ie. more than a bite or two of bread, or if I do that over a few days and stomach gets really unhappy).

    But I haven't had the allergy test yet - need to approach my doctor about that, and I know it isn't 100% anyway - so I have no idea if I am gluten or wheat intolerant. The foods I have to avoid if they aren't GF are pasta, pizza, ciabatta, croissants - although not as bad as the others, lower gluten? and bread. But the GF versions are fine (the ones I can find - GF/WF croissants aren't available in London, not tried GF pizza yet). And I need to be careful of something in GF granola and eating too many oats - it's a different feeling, but that gets cramps. Not sure why - that's always been the case. Too much fibre?

  • Have you tried the WAGfree bakery in Brixton for croissants? I'm not entirely sure but there's a good chance they make them or they may consider if you ask nicely :)

  • I've been recently off of any wheat per dietitian/nutritionist advice. Thank you for your input.

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