Oats and Gluten-Intolerance: It’s Complicated

by Jeanne on December 5, 2011

Sigh.  You know when you really want a relationship to work and you spend so much time trying to get it to work?  And then you finally realize, “he’s just not that into you”?  That’s me and Oats.  I cannot tell you how much I wanted Oats to like me.  Truly.  It’s been years since I’ve been truly wooing Oats and to no avail.  It’s a bummer.  I hung out with Oats as a kid (In his guise of Instant Oats packets), I sometimes hung out with Oats as a non-gluten-free adult, and I’ve tried to hang out with gluten-free Oats as a diagnosed gluten-free adult.

And you know what?  Oats never worked out for me.  It’s been such a long and hard road for me and Oats.  Oats is his own man.  He likes who he likes.  And I jealously watch as he gets along with others of my type (gluten-free folks), and I get sad.  We talk, we argue, we make up, we try.  But no matter what, we don’t work together.  It’s not either of our faults.  Oats is just being himself.  I am just being myself.  And, as it turns out, we just don’t work together, Oats and I.

Oats hangs out with some of my other gluten-free friends.  They say he works really well in their recipes.  I tried so hard to get him to work for MY recipes.  But, it wasn’t meant to be.  We don’t work together.  I am anguished.  Oats still gets invited to gluten-free parties.  We meet at some of these.  We say an awkward, “hi,” and leave it at that.  Friends are confused.  ”I thought you guys liked each other?” they say.  I say, “it’s awkward.”  I tell them, “he and I, well, we just can’t be together.  It’s complicated.”  My friends don’t understand.  So many of my gluten-free friends like Oats.  Why can’t I just like Oats?  Why am I being so difficult?

If you are gluten-intolerant, oats may be bad for you, too.  If you sometimes eat gluten-free oats and you feel bad, and you wonder, “hm, what did I eat that made me feel bad?” it could be oats.  It turns out that even though oats (the gluten-free ones) don’t have gluten, they do have proteins that might behave the same way as gluten on the body of sensitive individuals.  I spent so much time (years) trying to eat oats, but they always made me sick–and I never understood what was going on.  Then I read this article and ones like it, and it all made sense.  Read it for yourself and see if it might be you.

It turns out that folks who are sensitive like I am to the prolamine gliadin, which is found in wheat gluten, are also often senstitive to the prolamine in oats called avenin.  As it turns out, just as there is gluten-sensitive enteropathy (celiac disease), there is also avenin-sensitive enteropathy, which is a sensitivity to the gluten-like substance in oats.  Sigh.  What this means is that many of us gluten-intolerant folks are actually intolerant to oats themselves, not to them being cross-contaminated with wheat.  This is an area that hasn’t really been studied all that much.  But, the toxicity of oats for gluten intolerant individuals is recognized by certain countries, including Australia.

Now, I’m not a medical doctor.  And you shouldn’t listen to me without listening to your own body and speaking with your doctor.  But, it’s food for thought for those of us who are gluten-intolerant.

Sigh.

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{ 40 comments… read them below or add one }

polishko April 14, 2014 at 12:45 am

I’m almost gluten-free for 6-7 months now. I say almost, since I haven’t stopped eating out in a restaurant, though I am careful about the ingredients in the food I order, I surely cannot do anything about contamination. And I eat out at least once per week. Though not completely gluten free, my symptoms have improved grately. I am less often constipated, have no bloating and acid reflux, can get a better sleep, feel more energised, have improved menstrual period symptoms (less pain), have improvement in my memory skills. I didn’t go through any testing, especially genetic testing is not available in my country, but I have read that while celiac disease can be diagnosed by genetic testing, gluten sensitivity may not be. Nevertheless I don’t beleive I am celiac (yet), it seems that I can tolerate some gluten. For instance I eat stuf made from oats flour (non-GF, since these are also not available in my country) once in two months maybe, and I am ok with one or two cookies for example. But then if I overeat, I suddenly get constipated. I don’t get the bloating and acid reflux that I get with wheat, but still they are enogh to cause a disturbance. I have also realized that sometimes a specific type of food containing gluten (e.g. a soup eaten in a restaurant, containing tiny amounts of flour to make it thicken) does not cause a problem, while another time it triggers all the indigestion, bloating and acid reflux symptoms. I wonder if there is a critical concentration of gluten for me that causes the effect or is it a combination of gluten and something else. I have also found that gluten and alcohol consumed together, or strong alcoholic drinks containing gluten worsens everything fourfold for me.

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Jeanne April 15, 2014 at 9:45 pm

Polishko: Yes, it is confusing. I also react to a lot of things and am not sure whey I react to them some days and not others. I am thinking there is an inflammation question here. For me, the more things I eat that cause me to have inflammation, the more the inflammation builds up and the more I react to everything. I have found that alcohol is a major inflammatory for me–if I have a glass of wine with dinner a few nights in a row, I don’t feel well and I don’t react well to other foods. Sigh. It’s so confusing and hard to keep up with the intricacies of how everything works in our sensitive bodies.

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Jo January 30, 2014 at 12:02 am

OK. I have spent the past few days wondering why I feel so dreadful – and wracking my brains as to whether I had let slip a speck of wheat. But a few days ago I discovered gluten free oats and have been loving my bowls of Porridge for breakfast. Now I remember feeling similar after gf oatcakes and cutting them out a year or two ago, but I wasn’t convinced it was them, as everyone seems to say gt oats are fine, and then I forgot. Bugger. I love porridge. But it is good to see that oat intolerance is a possibility and I am not just paranoid.

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Jeanne January 30, 2014 at 10:21 am

Jo: I’m glad this was helpful!

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monai January 6, 2014 at 4:38 pm

Your medical doctor doesnt have clue about nutrition. The have only been trained on drug and how to manage symtoms.
They shouldnt even advised patients about nutrition because tjey habent been trained on that, so they wont have the right information. The only person you need to ask are nutrition therapist or the naturopathic doctor.

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Kathy November 22, 2013 at 5:06 pm

My son, sister and niece are all gluten and dairy intolerant. Their symptoms are bloating and abdominal pain. My sister is the most severe. The mystery is that they are now gradually becoming more and more sensitive to other foods that they were not previously sensitive to such as oats, corn, soy, pumpkin, kale, butternut squash, peanut butter, and peanuts. Has anyone else had similar problems?

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Jeanne November 24, 2013 at 3:14 pm

Kathy: unfortunately, it is very common for those of us with one food intolerance to develop more. I know I have many. Sigh. Some of the things you’ve listed are in the top allergens: corn, soy, peanuts. Kale is in the brassica family and brassicas can be hard on folks with digestive issues. All I can say to them is to hang in there and concentrate on the things that they CAN eat.

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Jo November 5, 2013 at 7:36 pm

Does anyone else get a burning (not heart burn, like the whole lining of the stomach) feeling in their stomach after eating oats? I have been gluten-free for almost 2 years (self diagnosed, my doctor suggested the elimination diet because he doesn’t believe blood tests work). I feel better, no bloating or joint pain, my eczema is under control, but I’m finding more allergies as I go :(. I am VERY allergic to millet (almost went to the hospital, I looked like I got hit in the face with a baseball bat), I have cut dairy back, and now I feel like this story. I ate wheat and oats my whole life (I’m 33) but have always had sinus issues, digestive troubles, and fought depression. I no longer have depression issues, my sinus troubles are mostly gone (except normal seasonal allergies), and my digestive issues are better… Until I eat oatmeal. I even tried gluten-free with flax seeds (I know I am okay with flax seeds), to no avail. I just bought some quinoa flakes, I hope it is a great hot breakfast .

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Jeanne November 6, 2013 at 10:26 am

Jo: I don’t get a burning but I get a stomach ache when I eat oats. Also, the older we get the more allergies we allergic-types seem to get. Sigh.

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elise June 10, 2013 at 12:58 pm

I ‘ve had to cut out gluten free oats and I did like ground flaxseeds with them, but I dont know whether I could be intolerant to both, anyone out there got any idea?I’m like Jess-many hospital tests over 2 years for the docs to tell me nothing wrong with me-I’m too scared to eat sometimes

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Jeanne June 11, 2013 at 12:21 pm

Elise: You could be reacting to flax seeds. I don’t do will with flax seeds because they are pretty hard on my digestive system. They are a strong laxative and I don’t need anymore of that. Also, be aware the flax seeds go rancid fairly quickly–especially once they are ground. They should always be stored in the fridge or freezer. You might want to be sure you’re not eating rancid flax seeds–they will taste very bitter–before you determine that you don’t do well with flax seeds.

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Jenna May 7, 2013 at 11:29 pm

Do any of you have the same symptoms when eating corn products? Apparently corn contains avenin too :(
What the hell am I meant to eat for breakfast if I can’t have oats??????????

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Jeanne May 8, 2013 at 8:28 am

Jenna: As far as I know, the prolamin in corn is zein (and not avenin). That said, I would monitor how you feel when you eat corn. It’s one of the top 8 allergens and if it’s not organic, the corn products we have in the US are made from GMO corn (which is bad news). My daughter has tested sensitive to corn, so we have it very rarely. That said, I understand your frustration. It’s really hard to not be able to tolerate such common things. Sigh. You might want to try quinoa flakes in the place of oats and see how you like them.

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Jerome Parness July 17, 2013 at 6:38 am

FYI, there is no scientific evidence that GMO anything is bad for you. This is a philosophical argument, not a scientific one, irrespective of the press it has gotten from “green” groups and the acquiescence of the governement to the political pressure it has engendered. Again, there is no scientific evidence that any GMO crop is bad for you. If anyone says there is, let them post the SCIENTIFIC reference for critical evaluation, not political bloviation. Therefore, GMO corn is not known to be bad for you, and you can eat it if you have gluten intolerance and are not allergic to corn.

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Jeanne July 17, 2013 at 11:16 am

Jerome: Actually, that’s not true. There have been many independent studies pointing out GMO’s adverse effects on health. Up until recently, these have been conducted by independent researchers and have been mostly ignored. But just recently (June 2013), the results of a large, peer-reviewed, U.S. study on pigs (whose systems are close to that of humans) was announced that showed adverse effects GMO soy and corn feed had on their digestive and reproductive systems (which is what farmers had been reporting anecdotally for years). A write up of the study can be found here: http://www.centerforfoodsafety.org/press-releases/2291/new-peer-reviewed-study-on-gmo-pig-feed-reveals-adverse-effects.

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Tara April 10, 2013 at 12:52 pm

Ahh…this could explain some things. I recently removed wheat from my diet (for reasons unrelated to wheat sensitivity) and suddenly discovered that my body felt much better without it! I kept it out for a few days and then went out with some friends and had wheat products and within a day or two the gut felt heavy (for lack of a better way to describe it) and my muscles felt bloated. So I’ve been exploring the gluten-free world and seeing what I like and don’t like, and have been making my own granola for breakfast (I can’t stand the taste and texture of oatmeal). But since I’ve been eating it I’ve been noticing the constipation coming back and general heavy feeling in the gut, though the muscles feel ok. Perhaps oats are no good for me as well?…which would be quite sad, because I really like the granola…

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Jeanne April 11, 2013 at 10:46 am

Tara: Bleh. I know–I love granola. But it’s nice to know what’s making me feel yucky!

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Michelle March 16, 2013 at 8:55 am

I don’t have celiac or allergies but I’ve noticed when I eat oatmeal I feel hazy. I stopped adding milk and cinnamon a they are natural sedatives when served hot. But still happening with the oats. Hmmm

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Jeanne March 16, 2013 at 2:53 pm

Michelle: Yeah, that sounds like you’re sensitive to the avenin.

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Another Sharon February 27, 2013 at 10:49 pm

Well, I am glad I found this page. I was recently diagnosed with celiac and doing everything gluten free. Over the last couple of weeks I have tried 3 different brands of gluten free granola cereals, always followed by a tummy ache. Me scratching my head trying to think of what I could’ve eaten that would be contaminated. Today, after a new granola cereal, and another tummy ache, and thinking what the 3 brands have in common, oats were it. So here I am trolling the net to see if I was bonkers, and I guess I am not. How sad, because, oatmeal chocolate chips cookies have been a favorite of mine. Thanks to all of you for sharing your stories, to know I am not alone in this.

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Jeanne February 28, 2013 at 6:52 am

(Another) Sharon: I’m glad to be of help–although I know what a drag it is to not be able to eat oats. Hang in there! Also, there is a product that can be substituted for oats–quinoa flakes. I used them years and years ago–I need to find them again and do some experimenting.

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sharon October 21, 2012 at 11:23 am

many sites and researchers indicate theie belief that many persons may have an intolerance to most all grains as they contain lectins that cause problems in the intestinal tract. http://www.marksdailyapple.com/lectins/#axzz29xWUYaBf
this may be more theory than science, but there are many individuals who do seem to be better off avoiding most grains.
easier said than done? for sure!

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admin October 21, 2012 at 12:48 pm

Sharon: Yes, true about grains in general. But oats are in a particular category by themselves because of the prolamine avenin. The avenin is very close in structure to the prolamine in gluten–which makes is especially tough for many people who are gluten intolerant.

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Asia June 24, 2012 at 1:41 am

I was sooo excited a few years ago when the market introduced “gluten free oats”. I bought some and baked some cookies. Mmm, they were amazing! …and then I immediately got really sick.

Since then I’ve had a few unfortunate experiences where I’ve had a “gluten free” treat and gotten really sick, and then I’m informed that they had pure oats in them. I have other family members that are Celiac and they also can not have pure oats.

In the city I live in there is a gluten free bakery that uses pure oats in a lot of their baked goods. It really bugs me because I’m obviously not alone—I’m not the only Celiac that can’t have pure oats.

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admin June 25, 2012 at 10:01 am

Asia: Yeah, I think many of us get sick on oats–but all of the information out there about “gluten-free” oats makes it hard to pinpoint that it is the oats that are making us sick. Sigh.

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Betty June 22, 2012 at 3:36 am

I am so glad I found this. Now I know why my bloated abdomen, phlebitis in my lower legs, joint pains, grogginess and sleeplessness reappear when I eat oats and/or buckwheat. My GP thinks I am a hypochondriac internet nut, and that there is nothing wrong with me, but someone forgot to tell my body it is all make-believe. I even run a temperature after I eat that stuff, and the redness and swelling in my legs is not funny. Oh well. There are still so may things I CAN eat, and thoroughly enjoy. I’m off to experiment with sticky rice rolls made of brown rice, palm sugar and cold pressed virgin coconut oil! And those lentil salads are delish – as well as bean curries or homemade Thai pea soup in my favourite mug!

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B May 21, 2012 at 7:59 pm

Thank you! Hopefully now I will stop trying them!

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Marcia February 15, 2012 at 5:37 pm

I’m one who’s just happy to finally have a formal name for why my Dad and I avoid oats. In my attempts at research I began to wonder if it was unique between us as there was generally no information other than how oats get tainted with gluten in processing plants. I’ve generally been fine with wheat, but that bowl of oatmeal I had in college had me in pain for three days straight (I initially thought appendicitis until I told my dad). I miss them though. Everyone wants to be slightly healthy and they bring in oat stuff, and I run the other direction. Usually I say I’m allergic, or oat intolerant when I have time.

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admin February 15, 2012 at 6:28 pm

Marcia: It’s such a hassle, isn’t it? Sigh.

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Jess January 13, 2012 at 2:42 pm

Julia,
I can understand what you’re going through. I’ve been through so many tests because the doctors thought I had a gluten-intolerance. However, I have no problem eating wheat but get the same horrible digestive problems when I eat oats. It’s extremely frustrating because all the doctors tell me I’m not gluten-sensitive so I shouldn’t have problems with oats, but alas my body tells me otherwise. I just hope my oat-intolerance doesn’t create a gluten-intolerance in the future.

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admin January 14, 2012 at 4:57 pm

Jess: I have to say, I don’t know anything about how the two intolerances are connected. But, yes–I agree–it would be great if you didn’t develop a gluten-intolerance!

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Julia December 17, 2011 at 9:20 pm

I am learning quite a bit about my years of difficulty with oats. I have no problem with wheat, but oats always make me react like you guys react to gluten. It is hard to get people to take me seriously because the separate reaction to oats is just now being understood.

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InTolerant Chef December 11, 2011 at 5:15 am

Oats don,t deal well with me either :( I miss them too…

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admin December 11, 2011 at 10:42 am

Sigh.

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Nikki December 8, 2011 at 11:28 am

I, too have the same problems with oats. I’m also intolerant to gluten and oats, as well as buckwheat. Buckwheat also gets invited to gluten-free parties, but we do not get along. It’s sad, really, because I love oatmeal, oatmeal cookies, everything oat. And buckwheat-yummy buckwheat pancakes, and all those gluten-free cookies made with buckwheat, too. Oh, well. Life goes on and you get creative.

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admin December 8, 2011 at 1:32 pm

Nikki: you know, one of my other readers was talking about not tolerating buckwheat. She and I thought it was because she couldn’t find gf buckwheat (i.e., not potentially cross contaminated). Hm. Now I’m wondering about buckwheat. Although it is a seed and not a grain. Interesting.

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Noor December 6, 2011 at 5:14 am

I always thought I must be doing something wrong. For years I used to have awful tummy aches and washroom problems, but chalked it off to cross contamination. For the past six months I’ve tried to reintroduce GF oats into my diet, and have failed miserably. Ah, to enjoy a nice bowl of oats in the morning again, alas the pain and suffering is not worth it in the end.

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admin December 6, 2011 at 6:59 am

Noor: I know. It’s so sad. Bleh.

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Becca Knox December 5, 2011 at 6:08 pm

Ah, Oats, he is a fickle lover. I have done the same dance with him. Overjoyed to be able to invite him back into my life, I cried with nostalgia and delight the day I made mazurkas again after a dozen years or more without. I reveled in his creamy steel-cut goodness for breakfast. I made the best apple-cranberry crisps ever. And yet, I was betrayed. Guts wrenchedand mind foggy, I had to admit Oats and I are not compatible and again he is banished from my kitchen. I share your disappointment, Jeanne. Sigh.

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admin December 5, 2011 at 7:23 pm

Becca: Sigh. It’s so sad, isn’t it?

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