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Oats Confusion
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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!

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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.)

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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.

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

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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. :)

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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.

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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!

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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.

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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.

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    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
    • I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game yet.
    • You are right. The weirdest part is that I feel fine, however, I am sure cross-contamination is doing damage even when we don't think it is. 
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