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 Confusion


dani nero

Recommended Posts

dani nero Community Regular

I ate oats by accident last week by buying cookies from a gluten-free bakery. I ate some without checking the ingredients because I was oh so happy I could walk into a bakery and actually eat something from it haha :-)

Anyway I got gluten-symptoms but a little less severe.

And then yesterday, as I was cleaning my kitchen, a bag of gluten-free oat flower released a cloud into the air by accident and I think I might have breathed some in. Now I'm having mild symptoms again but I'm not sure it's the oats because I did also try a new brand of frozen potatoes (spiced).

My question is:

Has anyone ever had a reaction from microscopic (trace) amounts of oats just like it is with gluten? If I react to oats, does that mean that I have to watch out even for trace amounts? I would hate to think that I have to, because I can hardly eat anything as it is!


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

A minority of people with celiac disease react to pure oats the same way they react to wheat and other gluten. You may be one of them. (I don't know if I am--I haven't tried oats since my dx.)

Roda Rising Star

I ate oats by accident last week by buying cookies from a gluten-free bakery. I ate some without checking the ingredients because I was oh so happy I could walk into a bakery and actually eat something from it haha :-)

Anyway I got gluten-symptoms but a little less severe.

And then yesterday, as I was cleaning my kitchen, a bag of gluten-free oat flower released a cloud into the air by accident and I think I might have breathed some in. Now I'm having mild symptoms again but I'm not sure it's the oats because I did also try a new brand of frozen potatoes (spiced).

My question is:

Has anyone ever had a reaction from microscopic (trace) amounts of oats just like it is with gluten? If I react to oats, does that mean that I have to watch out even for trace amounts? I would hate to think that I have to, because I can hardly eat anything as it is!

Approximately 10% of celiacs react to pure gluten free oats like as Peter mentioned. Definately the minority.

I am very sensitive to gluten free oats and trace cross contamination from them. That trace CC kept me ill for 8 months(started after I had been gluten free for 15 months. Facing steroids, I went on a further elimination diet and got rid of all gluten free products and baking items. This was when I began to think of gluten free oat CC as a possible suspect. After about three months (had some help from RX pancreatic enzymes also) I was feeling much better. A few months later I decided to try something from a bakery that used flours from Bob's Red Mill(they produce/package gluten free oats in their gluten free facility). I reacted horribly. Stupid me though knew I reacted to oats(had made cookies 7 months after going gluten free) but never gave CC from them a thought until my further elimination.

Because I react to oat CC I have to source my gluten free products carefully. It has eliminated some brands of things. So even though a product is tested and is gluten free, I have to go the extra step and inquire about gluten free oats also.

dani nero Community Regular

Not what I was hoping to hear, but thanks for your feedback. I appreciate it :-)

RL2011 Rookie

I eat gluten-free oatmeal (Bob's Redmill gluten-free Old Fashioned Oats (slow cook kind)) 2 or 3 times a week. I was not able to eat this without digestive issues for about 6 months after going gluten-free. I guess that I am not a sensitive guy. :)

lpellegr Collaborator

I tried gluten-free oats at some point after I went gluten-free, and I had the same symptoms as with gluten, so for some of us we just have to avoid oats. It does suck, doesn't it, having to still check the label even when it says gluten-free. It's possible that a new oat challenge would work for me after 8 years, but I'm not willing to chance it.

JNBunnie1 Community Regular

I ate a bite of something that said gluten free and didn't really like it, so that was all I had. Not a healthy bite either, like a nibble. Read the label next time I was in the store and it had oats in it. No ill effects I can tell- but it was so tiny that I might still react to a real dose, so I have not as yet been willing to really try it. I's too skeered!


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



Celiac.com Sponsor (A8-M):



SivaK Newbie

In Canada we have new laws regarding gluten free labelling, and now products are NOT allowed to be labelled gluten free if they contain or have come in contact with oats (even uncontaminated oats). There for Canada does not consider oats to be gluten free. I had wondered why the bag of oats I bought from a gluten free store only said wheat free, but not gluten free on them. Now I know why, and now I also know why I got sick from eating them. P.S. I also cut out Bobs red mill products (THANKS RODA) as they are made in the U.S. they do not abide by our labelling standards and can be labeled gluten free even though cross contamination with oats has occurred. Everyone with celiac disease is clearly different as you can tell if you read this forum. Listen to your own body, if oats don't agree with you, don't eat them. I am in recovery from P.O.T.S syndrome, the doctors have no idea why I developed it, I have a very strong suspicion it was from the oats as well as using gluten containing products on my skin. People will tell me it is safe to put gluten on your skin, because the molecule is too big to pass through my skin (just an example I really don't want to get into that as it is off topic and always a huge argument lol), people will also tell me the only reason I can't eat oats because they are cc. These people have a right to their own beliefs and should do what is best for them. I have a right to mine and will do what is best for me. If you think oats make you sick, don't eat them, you could save yourself a lot of pain down the road.

SivaK Newbie

Oh, forgot to mention, oats do not actually contain gluten (even though Canada won't allow them to be labeled gluten free) They contain something called avenin, which is a prolamine (protein) found in gluten. In people with a avenin sensitivity the avenin is toxic to the intenstinal mucosa just like gluten.

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. - Scott Adams commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      13

      Top Brands of Gluten-Free Canned Chili

    2. - Scott Adams replied to Midwesteaglesfan's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Going for upper endoscopy today

    3. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Guinness, can you drink it?

    4. - maryannlove commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      13

      Top Brands of Gluten-Free Canned Chili

    5. - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Gluten free nuts


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,271
    • Most Online (within 30 mins)
      7,748

    NancyWM
    Newest Member
    NancyWM
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Welcome to the club!😉 This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      I could not find the thread, but I recall at least one user who was drinking regular gluten beer daily but getting celiac blood tests done often (I think it was monthly) and doing a biopsy each year and all celiac disease tests were always negative. Everyone is different, but in general regular beer would be considered low gluten (not gluten-free!). I have no issues with Daura Damm, but those who are super sensitive might.
    • Aretaeus Cappadocia
      Azure Standard (https://www.azurestandard.com/) is one of my gluten-free vendors. I've purchased nuts, "grains", flours, and many other products there. If you are not familiar with Azure, you have to set up an account (no cost) and get your purchases either via shipping (expensive) or "drop" (free if you buy a reasonable minimum). Search their website for a drop location in your area. Each drop location has a local volunteer(?) coordinator who coordinates with the local customers. I go to a drop 4-5 miles from my home that delivers every 2 weeks. We seem to range from 8-18 customers at a given delivery. The downside of the drop is that you have to be there when they say. They give you a few days notice of the precise time, though, and they are punctual. Their pricing relative to other vendors for various products ranges from best price to overpriced, so you have to shop and compare. Quality is mostly good but once in a while you get a dud - however they've been very responsive to giving me a credit on the few occasions when I've complained. In my opinion, they are not as transparent about gluten as they could be. Some products are labeled "gluten free" and so far I trust that. Many products are labeled "Azure Market products are re-packaged by Azure for your convenience in a facility that meets Food Safety Modernization Act (FSMA) standards, including an approved allergen control program." I've corresponded with them over this and they all but say this means gluten free. I've come to trust this, with a little nervousness, but I wish they would be more explicit. They also sell a lot of gluten-containing products. Frankly, I think they are overlooking a business opportunity to become a trusted source for the gluten-free community by not being more clear about gluten. Among Azure products I've purchased are "Walnuts, Baker's Pieces, Raw", "Cashews, Raw, Large White Pieces, Organic" and "Missouri Northern Pecan Grower Pecans Fancy Native, Raw, Halves". The walnuts and cashews were very good and the pecans were fabulous. For almonds, I've been buying Blue Diamond unsalted when they go on sale (mostly from Safeway). The salted ones are probably fine too but the flavored ones I avoid now that I am gluten-free. I also buy products including nuts from CostCo (cashews, shelled pistachios). Their nuts usually contain a "made in a facility that processes wheat" statement, which is scary. I've contacted customer service about various Kirkland products and they will usually give you a response <<for a specific lot>> whether it really was made in a wheat facility (sometimes yes sometimes no). For the "Kirkland Signature Fancy Whole Cashews, Unsalted, 40 oz" and "Kirkland Signature Shelled Pistachios, Roasted & Salted, 1.5 lbs", I got a "safe" answer and I ate them. I got an "unsafe" answer once for "Kirkland Signature Fancy Whole Cashews with Sea Salt, 2.5 lbs" and "Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs" and I don't look at these anymore. Again, these answers were given for specific lots only. They will accept an unopened return for cash if you find out you don't want it. Costco also sells "Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs" that are labeled gluten free. My celiac kid eats them all the time. I pretty much only eat food that I prepare myself from scratch. My celiac symptoms are not that overt, so I can't say for certain I could identify a glutening. However, my antibody levels dropped 25 fold (into normal range) since my dx earlier this year. Hope this helps.
    • Jmartes71
      Doterra literally has saved my life hands down.Nateral supplements that really are pure grade and does work organically with ones body. I had to stop all my nateral supplements to be a good puppet for medical so I can get the financial help that my body won't allow me to do more days than not these days, every day with menopause.....Not feeling well.Had to switch " medical team" because I was told I wasn't celiac though I am gluten-free since 1994! I am also positive HLA-DQ2. I think doctors down play it because on quest lab work it states " However 39% of the U.S  general population carry these HLA-DQ variants, as a consequence, the presence of HLA-DQ2 or  DQ8 or both variants is not perse diagnostic of celiac disease". Hintz the down playing of celiac disease......This needs to change because doctors seem to down playe it because when I showed the past 2nd and 3rd  doctors that I waisted my time on this year showed my that line and absolutely down played it.4th pcp this year.I live in Patterson California and would love for a few of us to go to mayors office and make this disease heard
    • Midwesteaglesfan
      Back home after the scope.  Dr said as soon as he got in there it was clear signs of celiacs.  Must be a decent amount of damage.  I don’t remember the post procedure conversation as the anesthesia was still wearing off but that’s what my wife says anyway.  Still the biopsy results to come back but pretty definitive and now I get to learn to live gluten free
×
×
  • 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.