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Becoming Skeptical
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4 posts in this topic

Hi everybody!

I've been gluten free for about 2 years now after being sick for about 3 years before that and of course Jo doctor could figure out why.. I had two celiac disease tests done; both came back negative. But after being gluten free I have felt so much better! No more symptoms at all so I feel a gluten free lifestyle was the key.

However, I have been glutened accidentally before a few times and I feel awful and there are sometimes where my husband gives me the "uh oh..." look after we eat something and then decide to read the labels. But I won't get sick...

So I'm wondering if this happens to other people or am I not really gluten intolerant..? Although all of my stomach issues went away almost instantly after I cut gluten from my diet..

Thanks!

Natalie

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If you're feeling good, then I would stick with it! Maybe you aren't sensitive to trace amounts. I think most people with an intolerance don't have issues with cross-contam or small amounts of gluten like people with celiac would.

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That happens to me. It randomly striked me three days after eating a couple onion rings off my boyfriends plate that It had a wheat flour batter. "Well, did you get sick?"

"Uhm...no I didn't, no."

I really think it might be your body's immune system taking one for the team. It's totally worth it to stay off the gluten's, if not for the reason you know you'll feel good but because you're supporting the lifestyle and people just might take the hint.

Fight the good fight!

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Yup, reactions can be random. It happens to me and I have biopsy confirmed celiac. You know how sick you were before, don't second guess yourself now!

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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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