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

Oats - Any Statistics?


ValeriaZ

Recommended Posts

ValeriaZ Rookie

Hello, I am new here, could not find recent discussions of the topic

I read so many contradictory info on oats RE: gluten free.

Could you please give me feedback to build some kind of statistics - can you / do you eat oats? If yes - occasionally or regularily?

And also if yes - if you could say (optionally of course) if you have any autoimmune disorder associated to gluten intolerance?

Question because of my kid who has nephrotic syndrome (autoimmune) and I found out he is allergic to so many kinds of food that it is a real nightmare to feed him at all.

Eliminating oats would be tough - basically nothing to eat except rice and buckwheats :( So I really would like to have a better idea on how risky could be oats... I mean - not because of contamination with other cereals, but oats as themselves, with their avenin as protein...

Thank you in advance!


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



Celiac.com Sponsor (A8-M):



ciavyn Contributor

I've eaten them regularly and intermittently. I use Bob's Red Mill Gluten Free Oats, and I've never had a problem. I have Celiac's Disease (not gluten intolerance or anything otherwise.) Hope that is helpful!

ValeriaZ Rookie

I've eaten them regularly and intermittently. I use Bob's Red Mill Gluten Free Oats, and I've never had a problem. I have Celiac's Disease (not gluten intolerance or anything otherwise.) Hope that is helpful!

Thank you!

I am new to it all and still cannot find a lot of answers to my questions. May be you could explain what is the difference between celiac and gluten intolerance?

etta694 Explorer

I'm self diagnosed gluten intolerant with definite reactions to just a few crumbs of gluten products.. I eat gluten free oats as well. I get them in bulk.. but they are definitely gluten free. I make cookies and have it as cereal sometimes.

ciavyn Contributor

Gluten intolerance is the allergy form, I believe, and Celiac's disease is an autoimmune disease. Someone PLEASE correct me if I'm wrong.

etta694 Explorer

I call myself self diagnosed gluten intolerant because I haven't been tested for genetics or for antibodies... just had a biopsy that came back normal. However I cannot eat gluten. I found that out by changing my diet and I am not willing to eat gluten to have any other tests done now. It wouldn't change anything for me anyway. Perhaps there is a better definition than mine.... :unsure: that someone will post.

This is the definition.. I think

https://www.celiac.com/articles/30/1/What-is-the-difference-between-celiac-disease-and-gluten-intolerance/Page1.html

Is it not that (to the doctors).. Celiac is a definite positive test results for blood work or biopsy or genetics and gluten intolerance doesn't return the positive results that the doctors want..but still could be Celiac?

etta694 Explorer
:)

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



Celiac.com Sponsor (A8-M):



ValeriaZ Rookie

I call myself self diagnosed gluten intolerant because I haven't been tested for genetics or for antibodies... just had a biopsy that came back normal. However I cannot eat gluten. I found that out by changing my diet and I am not willing to eat gluten to have any other tests done now. It wouldn't change anything for me anyway. Perhaps there is a better definition than mine.... :unsure: that someone will post.

This is the definition.. I think

https://www.celiac.com/articles/30/1/What-is-the-difference-between-celiac-disease-and-gluten-intolerance/Page1.html

Is it not that (to the doctors).. Celiac is a definite positive test results for blood work or biopsy or genetics and gluten intolerance doesn't return the positive results that the doctors want..but still could be Celiac?

Thank you!

The definitions are confusing, true.

We are also self-diagnosed

tarnalberry Community Regular

10% of celiacs react to gluten free oats. non-specialty oats are almost universally contaminated at levels too high for celiacs.

what about amaranth, quinoa, and teff (even sorgum as a flour)?

etta694 Explorer

ValeriaZ, I found this article that is very much easier to understand, I think and thought you might like to read it. I'm still trying to get this clear in my head too.

https://www.celiac.com/articles/759/1/Early-Diagnosis-of-Gluten-Sensitivity-Before-the-Villi-are-Gone-by-By-Kenneth-Fine-MD/Page1.html

ValeriaZ Rookie

ValeriaZ, I found this article that is very much easier to understand, I think and thought you might like to read it. I'm still trying to get this clear in my head too.

https://www.celiac.com/articles/759/1/Early-Diagnosis-of-Gluten-Sensitivity-Before-the-Villi-are-Gone-by-By-Kenneth-Fine-MD/Page1.html

Thank you!

Very informative article.

No need anymore to convince me to go gluten-free - we are already wheat, rye and barley free with my kid for appr 2 months (he additionally dairy, soy, and (long list) free).

My main concern is oats. In this article it says oats also bad. :( Other articles on this site say no

tarnalberry Community Regular

If you go to pubmed and look at the research on oats in celiacs, you'll see that, on average, 10% of the particpants eating gluten free oats experience intestinal damage. I don't have time to link the studies for you (10 month old crawling around and all), but you may find it informative to look them up yourself.

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 SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    2. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    3. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    4. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    5. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
×
×
  • 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.