Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    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?

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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.)

Link to comment
Share on other sites
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. :(

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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).

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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. :(

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
mushroom Proficient

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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    2. - Zackery Brian replied to rsvtwin6's topic in Food Intolerance & Leaky Gut
      6

      Gluten and 30 other Items causing me Severe Muscle Inflamation Pain

    3. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    4. - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

    5. - knitty kitty replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,063
    • Most Online (within 30 mins)
      7,748

    Nacina
    Newest Member
    Nacina
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
×
×
  • Create New...