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Certified gluten-free Oats Question
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I know that about 10-15% of Celiac's react to gluten-free oats because of the avenin in it...my question is, is the reaction different than a gluten one? My gluten reactions are usually very neuro/mental so if the avenin reaction is a different kind of reaction, then I wouldn't mind taking the risk because there's been some products recently that have certified gluten-free oats that I've been wanting to try

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Since no two people react the same to anything, how will you know if you don't try them?

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For the most part my reactions to the avenin protein is very similar to my gluten reaction. When I actually ate the gluten free oats I ended up with horrible reflux, horrible abdominal pain/bloating and constipation for a week. This was my typical gluten reaction at the time. I did have an additional symptom with the oats. I got a painful blistering rash on my bottom!

I am sensitive to the gluten free oat cross contamination also. It kept me sick for 8 months with fat malabsorption, reflux, diarrhea, caused inflammation and stomach ulcer (showed up on scope) before I figured that out. I avoided the oats but didn't think to ask about CC.

I avoid any gluten free product that has potential oat CC. There are brands I do trust.

You'll just have to try them to see how your body reacts. There are plenty of celiacs/gluten intolerent people that eat them without incident.

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I would like to turn this question around. I have Celiac Disease but without telling symptoms. Therefore I am careful about not eating gluten because I know it is damaging to my intestines, but have no way to know if I accidentally consumed it. Does avenin work the same way? Should I be avoiding gluten-free oats just in case? Or is the reaction to gluten-free oats strictly one of discomfort?

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I know that about 10-15% of Celiac's react to gluten-free oats because of the avenin in it...my question is, is the reaction different than a gluten one? My gluten reactions are usually very neuro/mental so if the avenin reaction is a different kind of reaction, then I wouldn't mind taking the risk because there's been some products recently that have certified gluten-free oats that I've been wanting to try

It is a gluten reaction, complete with TTG antibodies and villous atrophy. I suppose people could be oat intolerant too, but the real concern is that oats are so closely related to wheat that some celiacs react as if they are a gluten grain.

I would like to turn this question around. I have Celiac Disease but without telling symptoms. Therefore I am careful about not eating gluten because I know it is damaging to my intestines, but have no way to know if I accidentally consumed it. Does avenin work the same way? Should I be avoiding gluten-free oats just in case? Or is the reaction to gluten-free oats strictly one of discomfort?

If I recall, CSA recommends you wait a full year after going gluten-free before you introduce oats.

http://www.csaceliacs.info/guide_to_oats.jsp

Then you're supposed to go to the doctor and get re-tested for antibodies after you've been eating oats for a few months. As I mentioned above, it's possible to have a celiac reaction to avenin.

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I eat gluten-free oats, but not by the bowlful. I use them in baking - cookies, granola bars, that sort of thing. So far I haven't reacted to them, though my stomach has so many issues that sometimes it's hard to tell. In any case, if you were thinking about eating some, I wouldn't recommend eating a huge amount until you know how your body will handle it.

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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
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    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
    • I can not help you with the the 504 plan, but I do know that I would do it.  My daughter is 15 and so far has tested negative for celiac disease, but in the event she does test positive, she will need a 504 plan to help keep her safe.  I am sure other parents will chime in.  This topic has come up repeatedly.  Until then, try a search with the forum.  Lots of people have posted with their comments and experiences.   As far as lunch is concerned, my kid has not purchased a school lunch since the 1st grade.  She says they are gross.  (Poor me!).  But, I would not trust the school to provide a gluten-free lunch.  Sure, they are required by law, but let's face it, who is working in the kitchens, ordering, etc?  I am on a University campus and have called out food service for not following gluten-free safe practices!    I would pack a lunch, at least until her health has stabilized.  The 504 plan is great for extra trips to the bathroom and hand washing.  It provides some protection in the classroom.   Keep advocating for her Mom!  You are doing a great job!  
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