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

gluten-free Oats Have A 1 In 20 Chance Of Causing Celiac Attack


Laban

Recommended Posts

Laban Newbie

In australia they sell these oats as " gloriously uncontaminated oats " their website states the oats are gluten free .I am a celiac,I tried these oats and got sick for 10 days losing 4.5 kilos,I contacted these guys and here is a copy of the letter they sent me..I personally don't think 1 in 20 is an exceptable risk!!!!also this should be on the packaging!!!

"We are aware from studies conducted in the US that 1 in 20 coeliacs had a reaction to the Oats, which is similar to what you experienced. As it was such a small number the States and other countries have chosen to legislate that they be labelled "Gluten Free", however we are unable to make any claims of this nature in Australia which is why we label the oats, Uncontaminated."Sadly I guess you fall into the 1 in 20."


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Your reaction isn't the company's fault. It is well known that a small percentage of Celiacs react to oats, even the gluten free ones.

Gluten free, or un contaminated as is required labelling in your country , means that there is no accidental wheat in the oats. Common, non- gluten-free or un contaminated oats might have wheat in them due to growing & harvesting practices.

Each person with Celiac must decide for themselves if they want to try oats. I think your assertion that it is 20% may be a bit high.

Open Original Shared Link

"Do oats contain gluten?

A large body of scientific evidence accumulated over more than 15 years has proven that oats are completely safe for the vast majority of celiac patients. Oats are not related to gluten-containing grains such as wheat, barley and rye. They don’t contain gluten, but rather proteins called avenins that are non-toxic and tolerated by most celiacs (perhaps less than 1% of celiac patients show a reaction to a large amount of oats in their diets).

Oats can be in a celiac’s diet provided they are selected from sources that guarantee a lack of contamination by wheat, rye or barley.

Some who add oats to their diet may experience GI symptoms. This may actually be a result of the increased fiber that oats provide instead of a reaction to the oats themselves."

kareng Grand Master

Open Original Shared Link

This one recommends limiting the amount of gluten-free oats eaten by a Celiac. Neither say 1 in 20 will react.

Please be careful making sweeping claims like this which are not backed up by facts.

Laban Newbie

Your reaction isn't the company's fault. It is well known that a small percentage of Celiacs react to oats, even the gluten free ones.

Gluten free, or un contaminated as is required labelling in your country , means that there is no accidental wheat in the oats. Common, non- gluten-free or un contaminated oats might have wheat in them due to growing & harvesting practices.

Each person with Celiac must decide for themselves if they want to try oats. I think your assertion that it is 20% may be a bit high.

Open Original Shared Link

"Do oats contain gluten?

A large body of scientific evidence accumulated over more than 15 years has proven that oats are completely safe for the vast majority of celiac patients. Oats are not related to gluten-containing grains such as wheat, barley and rye. They don’t contain gluten, but rather proteins called avenins that are non-toxic and tolerated by most celiacs (perhaps less than 1% of celiac patients show a reaction to a large amount of oats in their diets).

Oats can be in a celiac’s diet provided they are selected from sources that guarantee a lack of contamination by wheat, rye or barley.

Some who add oats to their diet may experience GI symptoms. This may actually be a result of the increased fiber that oats provide instead of a reaction to the oats themselves."

Sorry but I did not know of this "well known fact about oats" I have not long been diagnosed and trusted this company !

psawyer Proficient

Some people with celiac disease react to oats, even if they are free of cross contamination. The protein in oats is somewhat similar to that in the other grains that trigger the celiac disease reaction. I tolerate pure oats, but would not consider a commercial product with oats as an ingredient.

kareng Grand Master

The oats are gluten free. Like I said before, its not the companies fault if you react to oats. It is common for people with Celiacs to have other food intolerances. Some even go away after you have healed.

dilettantesteph Collaborator

I can't find the study which gives the 5% figure, which I have heard before.  Here is discussion of one that showed villous atrophy, so I don't think that is considered a food intolerance, but a celiac disease complication.  https://www.celiac.com/articles/717/1/Oats-Induce-Villous-Atrophy-in-Some-Celiacs/Page1.html

 

Some of us shouldn't eat oats, myself included.  The company who made the oats I tried did include a warning and I tried them anyway and a whole half cup too.  I was also sick for a long time afterwards.  It was my fault.  This condition requires a lot of education and I had to learn a lot of it the hard way.

 

People who try gluten free oats for the first time, please learn from my mistake and only try a little at first.


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Two of us in my family can't eat gluten-free Oats right now -- hope to get them back one day soon.

 

Four of us can.

Gemini Experienced

I have no issue with gluten-free oats at all and am glad of that as I love them. My gut was totally trashed at diagnosis and I wasn't absorbing anything but I can eat oats now

so there is hope for many others.

GFinDC Veteran

Oats don't like me anymore.  I think it was the CSA that sponsored a research project on oat reactions in celiacs a few years back.  Pretty sure their result was something like 10% of celiacs that react to oats.  But the was just one study, so maybe things have changed.  We have gluten-free oats marketed in the USA also Laban.  Bob's Red Mill sells them.  They make me sick and some other celiacs too.  If you are not one of the people who react to them they are fine.  But it may be better to wait 6 months to a year (until you are healed up some) before trying them again.

tarnalberry Community Regular

It isn't super well known, unless you are on a forum like this, but yes - I've seen in the scientific literature numbers between 5% and 10% of celiacs will react to avenin (the oat protein) because it is structurally similiar to gliadin (the wheat protein in play for celiac).  Other celiacs can eat them just fine.  It has nothing to do with the company in particular.

 

OP, I'm sorry that you got bitten by this and didn't know about this fact.

shadowicewolf Proficient

I'm another with issues with oats. Not fun :(

Brandiwine Contributor

I'm glad I read this thread, I've been wanting oats, I used to eat them a lot but haven't tried them since going gluten-free. I'm only two months in and have pretty much given up everything except fruits and veggies, seems like everything else makes me sick! I hate the blindsided feeling, thinking I've been so safe and careful then feel sick and spend days trying to pin point what it is. I was going to try oats, I bought Bobs Red Mill the first week but haven't tried them yet. I knew that serval ppl on here had oat issues, and I just don't want to get sick! To me it's worth only eating fruits veggies just to never feel like that again!!! Guess I need to get over it, maybe just try a couple bites. I don't like having such a limited diet :-/

GottaSki Mentor

I'm glad I read this thread, I've been wanting oats, I used to eat them a lot but haven't tried them since going gluten-free. I'm only two months in and have pretty much given up everything except fruits and veggies, seems like everything else makes me sick! I hate the blindsided feeling, thinking I've been so safe and careful then feel sick and spend days trying to pin point what it is. I was going to try oats, I bought Bobs Red Mill the first week but haven't tried them yet. I knew that serval ppl on here had oat issues, and I just don't want to get sick! To me it's worth only eating fruits veggies just to never feel like that again!!! Guess I need to get over it, maybe just try a couple bites. I don't like having such a limited diet :-/

 

I would give the BRM gluten-free Oats a try -- perhaps late in the day the first time!

 

Fruits and vegies aren't enough to live off long term -- Are you getting enough protein and good fats -- meat, fish eggs, legumes or nuts?

 

I get the everything giving you a reaction deal...hang in there... you will find more foods you can eat.

Brandiwine Contributor

I would give the BRM gluten-free Oats a try -- perhaps late in the day the first time!

Fruits and vegies aren't enough to live off long term -- Are you getting enough protein and good fats -- meat, fish eggs, legumes or nuts?

I get the everything giving you a reaction deal...hang in there... you will find more foods you can eat.

I don't eat meat or eggs. I do eat lots of beans, kale, avocados, nuts and seeds.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,666
    • Most Online (within 30 mins)
      7,748

    bailey1023
    Newest Member
    bailey1023
    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

    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.