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


ycavaz

Recommended Posts

ycavaz Rookie

I've been gluten-free for almost 2 years. I got diagnosed through Enterolab in 09. The problem is I don't know if I have celiacs or just gluten intolerance. When I first started the gluten-free diet I had no symptoms if i ate gluten. I am now very sensitive to it. Wheat is the worst for me, it truly is terrible.

Well, I decided to try the gluten free oats and I had horrible brain fog, dizziness, and fatigue. I think I have different reaction to different types of gluten. I know its silly but I cried when I found out I can't even tolerate gluten-free oats.

Any advice would be welcome

Yvette


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

Avenin in oats is similar in structure to the gluten in wheat, barley and rye. Some celiacs react to it as if it were wheat. I am like that. I was sad about it too, and it didn't help that it made me feel so terrible. There are lots of other gluten free grains to try though.

kwylee Apprentice

I am gluten intolerant through Enterolab testing as well, and do NOT have Celiac disease. (I know there are those on this website who feel that everyone who is gluten intolerant has Celiac disease, but please know that I have read an abundance of intelligent research, and I am a firm believer that gluten intolerance manifests in many ways, not always Celiac disease).

I haven't tried eating even the gluten free oats because I've read that many people react to them. I cannot tolerate casein or soy either (makes me feel the same as gluten, sometimes worse), and it makes a good deal of sense that it is what the previous poster said, that it is the similarity in the chemistry between gluten and oats, that the body can't discern the difference, which I have also read about my intolerance to casein and soy. But whether cross contamination or chemistry, for now (and possibly forever) I'll not eat gluten free oats. Too bad, I really liked oatmeal before, so I know how you feel there.

Roda Rising Star

I am also one that can not tolerate pure certified gluten free oats. I react very badly. I sympathize with you!

Skylark Collaborator

I have been cautiously eating some Bob's Red Mill oats and seem to be tolerating them. In studies, the majority of celiacs do tolerate oats (no reappearance of antibodies, symptoms, or damage on biopsy), so I wouldn't shy away from trying them. Just keep in mind that if you react, it's not in your head as there are some documented celiac reactions to avenin (oat gluten).

Oats have a lot of healthy fiber that can be harder to get without wheat. The thinking of most dietitians seems to be that gluten-free oats are a very good food for celiacs that tolerate them. If you're medically diagnosed, the recommendation in a couple of the papers is to try oats for six months under medical supervision and with a test for antibodies after the trial period.

bridgetm Enthusiast

I am gluten-intolerant but so far no evidence of Celiac. I continued to eat oatmeal frequently when I first started gluten-free in the spring. I kept to McCann's Irish oats because they tasted great, were filling and the company does everything it can to keep them safe (it helps that they are based in Ireland, a country with a large population of Celiacs). I laid off after hearing that oats could impede recovery of intestinal damage and at them again for the first time this weekend. I had some intestinal pain and inflammation, but I also ate out that day and am sure I inadvertently ate small amounts of soy and dairy so I'm not sure as to the culprit; just in case, I plan to avoid the oats this week.

I know it's not the same, but Bob's Red Mill makes a buckwheat hot cereal that doesn't taste too bad. It's an acquired taste-- the first bowl I ate was repulsive-- but if you play around with cooking times you might decide it's better more or less well-cooked (oatmeal preferences don't accurately transfer to the buckwheat, as far as I can tell) and adding things like fruit, brown sugar, or honey, or whatever you would think to add to oatmeal, can liven it up a bit. For me, a bad banana has the potential to ruin a bowl of buckwheat.

Skylark Collaborator

McCann's oats are NOT celiac safe. Tricia Thompson tested four separate tins of McCann's in a study published in the New England Journal of Medicine in 2004. One can had no detectable gluten and another was 12 ppm, but the third can had about 23 ppm and the fourth had over 700 ppm of gluten! Another study done at the Chicago Tribune in 2008 pulled a can of McCann's off the shelf and it tested at 160 ppm.

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



bridgetm Enthusiast

McCann's oats are NOT celiac safe. Tricia Thompson tested four separate tins of McCann's in a study published in the New England Journal of Medicine in 2004. One can had no detectable gluten and another was 12 ppm, but the third can had about 23 ppm and the fourth had over 700 ppm of gluten! Another study done at the Chicago Tribune in 2008 pulled a can of McCann's off the shelf and it tested at 160 ppm.

Open Original Shared Link

Wow! Thank you for sharing. I will take those off the shelf and stick with the buckwheat.

What's the general consensus on Bob's oats? I have an unopened package of those as well.

Skylark Collaborator

Glad to help. I loved McCann's oatmeal and was so sad when I read that study.

Bob's is actively testing all their oats with the R5 ELISA, which is the most accurate test avaliable. They don't say on their website what they are using as a cutoff for gluten-free, but I'm sure it's below 20 ppm. If you tolerate whatever traces of gluten might be in the Bob's buckwheat, the oats should also be fine.

bridgetm Enthusiast

Good to hear there's a reasonably safe backup. Bob's will never beat McCann's though.

ycavaz Rookie

Thanks guys for all the replies! I can see I'm definitely not alone.

The oatmeal that made me sick was Bobs Red Mill although I can tolerate the hot cereal that they make, which I really like.

ycavaz Rookie

I've noticed that many of you have Hashimotos which I have had for over 11 yrs.

tarnalberry Community Regular

Bob's Red Mill makes two varieties of oats - one is processed in their gluten-free facilities and is tested, the other isn't. You have to make sure to get the oats that are labeled gluten free.

MelindaLee Contributor

Bob's Mighty Tastey Hot Cereal is great...though it's more like cream of wheat (and I was a die hard CoW lover!). I did find Glutenfreeda instant oatmeal at Whole Foods, but I haven't tried it yet. (Maybe tomorrow...it's getting cold! :lol: )

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 Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Low iron and vitamin d

    4. - Scott Adams replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

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

    • Total Members
      133,213
    • Most Online (within 30 mins)
      7,748

    beckyEck
    Newest Member
    beckyEck
    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
      Cristiana, that sounds like a great approach and I will be looking forward to the results. I am in the same boat as you. I don't experience overt symptoms with minor, cross contamination level exposures so I sometimes will indulge in those "processed on equipment that also processes wheat . . ." or items that don't specifically claim to be gluten free but do not list gluten containing grains in their ingredient list. But I always wonder if I am still experiencing sub acute inflammatory reactions. I haven't had any celiac antibody blood work done since my diagnosis almost 25 years ago so I don't really have any data to go by.   
    • cristiana
      I've been reflecting on this further. The lowest TTG I've ever managed was 4.5 (normal lab reading under 10).  Since then it has gone up to 10.   I am not happy with that.  I can only explain this by the fact that I am eating out more these days and that's where I'm being 'glutened', but such small amounts that I only occasionally react. I know some of it is also to do with eating products labelled 'may contain gluten' by mistake - which in the UK means it probably does! It stands to reason that as I am a coeliac any trace of gluten will cause a response in the gut.  My villi are healed and look healthy, but those lymphocytes are present because of the occasional trace amounts of gluten sneaking into my diet.   I am going to try not to eat out now until my next blood test in the autumn and read labels properly to avoid the may contain gluten products, and will then report back to see if it has helped!
    • lizzie42
      Hi, I posted before about my son's legs shaking after gluten. I did end up starting him on vit b and happily he actually started sleeping better and longer.  Back to my 4 year old. She had gone back to meltdowns, early wakes, and exhaustion. We tested everything again and her ferritin was lowish again (16) and vit d was low. After a couple weeks on supplements she is cheerful, sleeping better and looks better. The red rimmed eyes and dark circles are much better.   AND her Ttg was a 3!!!!!! So, we are crushing the gluten-free diet which is great. But WHY are her iron and vit d low if she's not getting any gluten????  She's on 30mg of iron per day and also a multivitamin and vit d supplement (per her dr). That helped her feel better quickly. But will she need supplements her whole life?? Or is there some other reason she's not absorbing iron? We eat very healthy with minimal processed food. Beef maybe 1x per week but plenty of other protein including eggs daily.  She also says her tummy hurts every single morning. That was before the iron (do not likely a side effect). Is that common with celiac? 
    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
×
×
  • 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.