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Are Oats Really Gluten Free?


Natalya

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Natalya Newbie

I haven't had oats in at least 6 months since I was diagnosed. But now that I ate certified gluten-free oatmeal by Glutenfreeda's, I had a classic gluten-related reaction that I used to get before I went on a gluten-free diet.

I've heard oats should only be avoided if they're not produced by a certified gluten-free manufacturer. This one is certified... So why did I have the reaction? Should celiac patients still avoid oats?


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Skylark Collaborator

About 10-15% of celiacs react to the gluten protein in oats. If you react, you need to avoid them.

Rowena Rising Star

My personal opinion on the matter is that oats, no matter if they claim to be gluten free or not are questionable. 10-15% percent is too high a percent to risk for me. Thats anywhere from one out of 10 to 3 out of 20 people, and to me, the odds just dont look good. True enough that the majority of people dont have a problem. But that percent of people who do, it scares me. So my personal opinion is to avoid them. In your case, its clear to me, that you fall in that 10-15 percent who oats affect them horridly. And so I suggest maybe you avoid oats as well. But that is just me. Up to you of course.

(By people, for the purposes of this discussion, consider it defined as celiac/gluten intolerant people. Just dont feel like writin it out every time.)

Natalya Newbie

Thanks, I didn't know that not all celiac ppl can eat oats. Besides, having developed one food intolerance, I'm at a high risk of acquiring another... whether already present of yet to be acquired. :(

Gemini Experienced

I haven't had oats in at least 6 months since I was diagnosed. But now that I ate certified gluten-free oatmeal by Glutenfreeda's, I had a classic gluten-related reaction that I used to get before I went on a gluten-free diet.

I've heard oats should only be avoided if they're not produced by a certified gluten-free manufacturer. This one is certified... So why did I have the reaction? Should celiac patients still avoid oats?

If the oats were certified, then they are gluten free. Certified foods are generally batch tested to prove there gluten-free status.

It may not be a Celiac related reaction at all but could be from the very high fiber content of oats. I am an extremely sensitive Celiac who does not eat food from shared lines yet I have no issues with oatmeal at all. I ate lots of it before I was diagnosed so was used to high fiber foods. As long as it's certified, I have no problem, which leads me to believe they are gluten free. Reactions to higher fiber foods are generally the same as those of a Celiac, gastrointestinal reaction......if that's the type you are referring to. It's easy to blame everything on gluten but it may be something entirely different.

tarnalberry Community Regular

10% of celiacs have a gluten reaction to oats, because the oat protein (avenin) is molecularly similar to the wheat protein (gliadin).

Skylark Collaborator

If the oats were certified, then they are gluten free. Certified foods are generally batch tested to prove there gluten-free status.

It may not be a Celiac related reaction at all but could be from the very high fiber content of oats. I am an extremely sensitive Celiac who does not eat food from shared lines yet I have no issues with oatmeal at all. I ate lots of it before I was diagnosed so was used to high fiber foods. As long as it's certified, I have no problem, which leads me to believe they are gluten free. Reactions to higher fiber foods are generally the same as those of a Celiac, gastrointestinal reaction......if that's the type you are referring to. It's easy to blame everything on gluten but it may be something entirely different.

The celiac reactions to oats in oat-sensitive celiacs have been confirmed by blood test and biopsy. Here is the study where they tested celiacs who were eating oats and feeling sick from them.

Open Original Shared Link

And another where someone went into clinical remission eating elisa tested oats.

Open Original Shared Link

There are a LOT of studies showing oats are safe for celiacs who tolerate them but the general clinical recommendation is for celiacs who eat oats to get a blood test and biopsy after about six months eating them.


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dilettantesteph Collaborator

I react to oats. The reaction is the same or even worse than my reaction to gluten. I'm not sure because I would have had to be crazy to sit down to a bowl of a wheat cereal like I did with the oatmeal. At least I didn't finish it. I wish that I had been careful enough to try only a small amount at first. It had nothing to do with the fiber. I got my classic non GI symptoms too, joint pain and swelling, blurred vision, irritability, inability to concentrate, numbness of extremities, etc. The reaction was much too severe to be from cc of the oats. It was a reaction to the avenin in the oats.

Gemini Experienced

The celiac reactions to oats in oat-sensitive celiacs have been confirmed by blood test and biopsy. Here is the study where they tested celiacs who were eating oats and feeling sick from them.

Open Original Shared Link

And another where someone went into clinical remission eating elisa tested oats.

Open Original Shared Link

There are a LOT of studies showing oats are safe for celiacs who tolerate them but the general clinical recommendation is for celiacs who eat oats to get a blood test and biopsy after about six months eating them.

I never said that oats cause no problem for Celiacs, only that the reaction may not be from the protein in oats or the oats are not contaminated, which would be expected from certified, batch tested oats. I am sure there is a very small percentage of people who cannot tolerate them, as there are very small percentages of people who cannot tolerate other grains, but that does not mean it is a Celiac based reaction. Too much emphasis is placed on that when it might be another problem entirely and then people further limit their diets without cause. Oats are very hard to digest for many, from a fiber point of view. I know many non-Celiacs who cannot tolerate them because of the fiber issue.

I agree that blood work is a good idea on a somewhat regular basis, for those who were diagnosed via that route but it doesn't help those who are not serio-positive. However, you are going to know soon enough if oats give you grief and I don't think a repeat biopsy after eating oats is always necessary. Pretty invasive test just to see if oats are a problem.

Natalya Newbie

Thanks everyone for sharing your thoughts and links!

I think the fiber in oats can only cause problems to those who barely consume fiber on a regular basis. I eat a lot of fiber every day and exercise regularly. There's no reason for the body to react to fiber out of the blue. i do think, however, that many food-related allergies come from non-gluten sources. And since tests are so inaccurate, elimination diet is the key. Sigh... I'm new to this, recently diagnosed by elimination diet, and it'll take years for me to rule out all possible allergens. :(

CarolinaKip Community Regular

I haven't had oats in at least 6 months since I was diagnosed. But now that I ate certified gluten-free oatmeal by Glutenfreeda's, I had a classic gluten-related reaction that I used to get before I went on a gluten-free diet.

I've heard oats should only be avoided if they're not produced by a certified gluten-free manufacturer. This one is certified... So why did I have the reaction? Should celiac patients still avoid oats?

I was told not to try gluten-free oats until after being a year on a gluten-free diet. When I was told I had IBS I had a big bowl of oatmeal one day. It was one of the most painful days ever! I don't think I will try the gluten-free even at my year of gluten-free. I can live without the oats....After being in pain for 11 months, it's not worth it. Hate you're feeling bad from it.

Skylark Collaborator

I never said that oats cause no problem for Celiacs, only that the reaction may not be from the protein in oats or the oats are not contaminated, which would be expected from certified, batch tested oats. I am sure there is a very small percentage of people who cannot tolerate them, as there are very small percentages of people who cannot tolerate other grains, but that does not mean it is a Celiac based reaction. Too much emphasis is placed on that when it might be another problem entirely and then people further limit their diets without cause. Oats are very hard to digest for many, from a fiber point of view. I know many non-Celiacs who cannot tolerate them because of the fiber issue.

I take it you didn't look at the research I linked at all? Fiber reactions do not cause activated T-cells and villous atrophy on biopsy. There are a subset of celiacs who have true celiac reactions from oats. It is not intolerance, problems with fiber, cross-contamination, or allergy. It is an autoimmune, celiac reaction triggered by avenin (the gluten-type protein in oats).

People around here do limit their diets too much out of confusion sometimes, but there is also not medical literature showing documented celiac reactions to a lot of foods people are eliminating. Oats are in a unique position because of the occasional cross-reactivity of avenin with celiac antibodies.

mushroom Proficient

I had terrible reactions to oats as a child, and would not dream of touching them :o

dilettantesteph Collaborator

I take it you didn't look at the research I linked at all? Fiber reactions do not cause activated T-cells and villous atrophy on biopsy. There are a subset of celiacs who have true celiac reactions from oats. It is not intolerance, problems with fiber, cross-contamination, or allergy. It is an autoimmune, celiac reaction triggered by avenin (the gluten-type protein in oats).

People around here do limit their diets too much out of confusion sometimes, but there is also not medical literature showing documented celiac reactions to a lot of foods people are eliminating. Oats are in a unique position because of the occasional cross-reactivity of avenin with celiac antibodies.

Thank you. I wish that this had been made clear to me before I had that bowl of oatmeal some years ago. Good work getting this information out.

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    • trents
      Unless gluten exposure is happening on a regular basis, it is doubtful that blood antibodies would show up elevated in testing. It takes time for them to build up to detectable levels.
    • Russ H
      HI Nancy, In your first post, you said that you were diagnosed by biopsy and blood test - this is what I was referring to: the blood test is for antibodies that are made during active disease. After a period on a strictly gluten-free diet, the antibodies return to low level. It is a good way of checking for accidental exposure if symptoms persist. If you are reacting to foods that don't contain gluten, you may be reacting to something else. Alternatively, a condition called SIBO is common in people with coeliac disease, where there is an overgrowth of bacteria in the small intestine. This can be tested for with a simple breath test. The main treatment is with a course of antibiotic. Small Intestinal Bacterial Overgrowth (SIBO)
    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
    • nancydrewandtheceliacclue
      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
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