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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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