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

Any1 Else Can Not Eat Oats?


MandyCandy

Recommended Posts

MandyCandy Rookie

I was really surprised to find out that people are now saying oats are not supposed to be bad for people with celiacs. I've never been able to eat Oatmeal or even granola bars with out feeling instantly sick (stomach ache, feeling naucious, and a weird headache). I have Chronic Rhinitis, and it gets just as bad after eating oats as it does when I eat Gluten. Does that mean I'm also allergic to Oats?

thanx, Mandy


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

Most oats are contaminated with gluten. Plus, there are conflicting opinions as to whether pure oats have a similar enough protein to cause a reaction.

To test to see whether you can tolerate oats, you would need to be sure to have uncontaminated oats. You could try the health food store to see if they have any. I personally avoid them entirely.

AndreaB Contributor

I bought the gluten free oats but have been afraid to try them. I am both gluten and gliadin allergic as well as gluten intolerant. I have dropped most grains from my diet. I do make bread with millet flour which is my gliadin exception but I rarely have it. I do eat rice still.

elonwy Enthusiast

SOME celiacs respond to the protien in oats (avenin) the same way as they do to gluten. If you were eating Quaker oats or any american grown oats, then thats not really a test, because of the cross contamination. There are a couple american companies that sell gluten free oats ( google gluten free oats) and McCanns is safe. Oatmeal used to hurt my stomach, but I am fine with McCanns, so I'm positive it was a CC issues.

The gluten free stuff is expensive though.

Elonwy

MandyCandy Rookie
SOME celiacs respond to the protien in oats (avenin) the same way as they do to gluten. If you were eating Quaker oats or any american grown oats, then thats not really a test, because of the cross contamination. There are a couple american companies that sell gluten free oats ( google gluten free oats) and McCanns is safe. Oatmeal used to hurt my stomach, but I am fine with McCanns, so I'm positive it was a CC issues.

The gluten free stuff is expensive though.

Elonwy

Thanx so much i'll give it a try!

Mandy

LKelly8 Rookie

I don't eat oats, or anything cc with oats.

I haven't seen any data, any hard science, that says oats are ok. What I have seen is a mixture of conjecture and hopeful thinking. And I'm hoping that oats are ok too! I just haven't seen any evidence that would prove oats safe.

One of the big celiac doctors, I can't remember which one, suggested people try small amounts of oats and then if they felt ok, to eat more because no symptoms meant the oats weren't causing a reaction. This line of reasoning baffles me. You can have damage to your small intestine and not have noticeable symptoms. What's worse is even without damage, you could could still be provoking an abnormal immune response and increasing your chances of other autoimmunity problems.

:unsure: I don't know.

I loved oatmeal cookies. I hope, I hope, I hope they do some more research on this!

penguin Community Regular

Here's a bunch of scholarly articles on celiacs and oats:

https://www.celiac.com/st_main.html?p_catid=14


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



Celiac.com Sponsor (A8-M):



elonwy Enthusiast

Open Original Shared Link

The latest, from 2004.

The original "oats are safe" research 2001:

Open Original Shared Link

Another study from 2000:

Open Original Shared Link

I'm not sure what the current state of research is, but those are the medical studies that have been done.

Elonwy

LKelly8 Rookie

From the 2004 study :

"Three of the four patients who had reported problems after eating oats showed intestinal inflammation typical of celiac disease, and Sollid and colleagues studied intestinal T cells from these three patients. Two of the five patients who seemed to tolerate oats also had oats-reactive intestinal T cells. Functional study of these T cells showed that they were restricted to celiac-disease-associated HLA molecules and that they recognized two peptides derived from oat avenin that are very similar to peptides of gluten.

Oats are not safe for all patients with celiac disease, but future studies are needed to determine the frequency of oats intolerance."

It's statements like these that worry me. The celiac doctor I heard seemed to suggest that we could just try oats and if we didn't react we passed the "test" to see if oats were safe.

(Thanks for the links, BTW. I hadn't seen several of them. I'm glad to see there's still activity in the oats-for-celiacs arena!)

MandyCandy Rookie
From the 2004 study :

"Three of the four patients who had reported problems after eating oats showed intestinal inflammation typical of celiac disease, and Sollid and colleagues studied intestinal T cells from these three patients. Two of the five patients who seemed to tolerate oats also had oats-reactive intestinal T cells. Functional study of these T cells showed that they were restricted to celiac-disease-associated HLA molecules and that they recognized two peptides derived from oat avenin that are very similar to peptides of gluten.

Oats are not safe for all patients with celiac disease, but future studies are needed to determine the frequency of oats intolerance."

It's statements like these that worry me. The celiac doctor I heard seemed to suggest that we could just try oats and if we didn't react we passed the "test" to see if oats were safe.

(Thanks for the links, BTW. I hadn't seen several of them. I'm glad to see there's still activity in the oats-for-celiacs arena!)

Well considering the way oats make me feel I think i'll just be better off Not eating them at all! Thanx for all the information and links! you guys have been so much help!

Mandy

VydorScope Proficient

If anyone does decide to try it you can order gluten-free oats from:

Open Original Shared Link

(there is a Candian one too, but I do not have that link)

Personaly I am avioding all oats wiht my son till he is old enough to make the decsion on his own.

Rachel--24 Collaborator

I tried McCanns oats after all the talk about them being "safe". I bought the ones in the round can first and ate them maybe twice w/out incident. Then I bought the McCanns instant oatmeal in the box....it was not a good thing. Instant stomach cramps and "D"...the next day I had blisters on my face. :(

I havent had oats since then.

penguin Community Regular

Here's something from the McCann's Ireland FAQ:

Gluten Free

Are McCann's Oat products gluten free?

All McCann’s oat products are processed in a dedicated oatmeal mill that handles only oatmeal. In the supply chain between farm and mill, there is a possible cross contamination with other grains, such as wheat and barley but we reckon that the level of non-oat grains to be less than 0.05%. Cleaning equipment within the milling process would remove the vast majority of these grains along with other elements such as stones, straw etc.

But we cannot guarantee that McCann’s oats are totally gluten free and we recommend that consumers use their own judgement as to whether they wish to use our oatmeal or not. Many celiacs can tolerate our oatmeal products without any adverse effect but they may not suit those who are particularly sensitive.

Open Original Shared Link

elonwy Enthusiast

Suck, Thats new. Used to say, we test batches for gluten, etc, etc. Must have been issues. grrr.

Elonwy

Mayflowers Contributor

And what about "symptoms" that don't show up as diarrhea? I had really bad arthritis in my hips leading to a bilateral hip replacement. If I had known, I would have probably never gotten the arthritis. I haven't had diarrhea so bad over the years to make me think I had gluten intolerance. I just felt lousy and attributed it to getting older.

Rachel--24 Collaborator

But we cannot guarantee that McCann’s oats are totally gluten free and we recommend that consumers use their own judgement as to whether they wish to use our oatmeal or not. Many celiacs can tolerate our oatmeal products without any adverse effect but they may not suit those who are particularly sensitive.

Penguin,

I knew it! :o:angry:

Those oats messed me up big time! The "D" was almost immediate ....my body was getting rid of the toxin right after I ate it.

I know it was definately gluten because nothing else gives me "D" and nothing else gives me blisters on my face. <_<

Stupid oats. :angry:

Thanks for posting though....I've been wondering about whats true and whats not true ever since this happened to me. Now I know.....no more experimenting with oats...ever. ;)

LKelly8 Rookie
And what about "symptoms" that don't show up as diarrhea? I had really bad arthritis in my hips leading to a bilateral hip replacement. If I had known, I would have probably never gotten the arthritis. I haven't had diarrhea so bad over the years to make me think I had gluten intolerance. I just felt lousy and attributed it to getting older.

Exactly. Or no symptoms at all! :o Silent celiac. I believe my grandfather, who died of colon cancer, had the "silent" type of celiac. He used to say he had trouble occasionally with "lactose intolerance" - that was the only clue. The past five years I've been having "trouble with lactose intolerance" until I was diagnosed celiac last year! My mother, who's had celiac all her life, kept prompting to get checked. {Thanks Mom} ^_^

VydorScope Proficient

Thats the problem.. symptons can be dangerously unreliable in the celiac disease world.

First you need truly gluten-free oats ( Open Original Shared Link CALIMS to have some but by far MOST oats are not unconitmainated) and second you would have to eat ALOT of them for an extended period, then re-do your testing to see if its impacted you.

First though you should prbly get all the testing for an allergy to oats or the oat protien....

Or you can just be safe and skip them completely :D

gfp Enthusiast
Well considering the way oats make me feel I think i'll just be better off Not eating them at all! Thanx for all the information and links! you guys have been so much help!

Mandy

I don't have any instant reaction but I have so far avoided them....

CC bothers me and the disputed status but mainly I just think if I do eat them Im always going to be wondering when I get caught out "was it the oats?"

bknutson Apprentice

:( eating oatmeal is really what lead me to finally go to the dr and search out what was hurting me

so bad. I would eat it in the morning and I would just die all day long. Just agony. So I am a believer that we celiacs can not eat oats. Maybe it is not the oats but the cross contamination but I certainly am not going to try it. And I love them. I have been diagnosed for a year now and I still dont have it right. But I do alot better than befor.

  • 2 weeks later...
KaitiUSA Enthusiast

I will avoid oats at all costs. Some celiacs even react to the protein in oats called avenin and I will not risk it.

jaten Enthusiast

I was diagnosed in Dec '05. At that time my GI was very firm that I should avoid oats. I do.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    2. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    3. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

    4. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    5. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,154
    • Most Online (within 30 mins)
      7,748

    bobadigilatis
    Newest Member
    bobadigilatis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.