Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Are Oats Really Gluten Free?


Natalya

Recommended Posts

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?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,566
    • Most Online (within 30 mins)
      7,748

    Rrenee2990
    Newest Member
    Rrenee2990
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
    • petitojou
      Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌  Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months ago but was unable to absorb any of it.  Thank you again! Hearing such gentle words from the community makes my body and heart more patient and excited for the future. 
    • ckeyser88
      I am looking for a roomie in Chicago, Denver or Nashville! 
    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.