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Test Confusion


alisonbraun

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alisonbraun Newbie

Hi All! I am new here!

I was diagnosed, I think, when I was in high school (5 years ago). With what? I am not sure. I am really only seeking more info now because I have been a bad girl for the last few years and have eaten whatever I wanted. Now I want to take it seriously because I am concerned about my future health.

Here is my situation/questions:

I only had blood work done, and they said I was "positive" for a gluten allergy. I am assuming that that IgA test I have seen mentioned around here is what they were talking about. My question is, am I gluten intolerant or do I have Celiac Disease? I have heard the two are actually not the same thing, with Celiac disease being worse. I don't want to have a biopsy if the IgA test is the ultimate positive, and in, no false positives.

Sometimes I can eat wheat/gluten products and be fine. Other times I seem to get sick after one bite. Oddly, when I ate wheat consistently I wasn't always sick, but when I cut it out for a while and then had a some I got really sick. I think I am still in denial and taking the immature route and looking for someone to tell me to keep eating gluten.

Also, what about levels of gluten?? I eat a lot of Japanese food, most of which has soy sauce. Now I know if making from scratch I can just use gluten free soy sauce, but there are a lot of things that are pre-made that I am just unable to make. So here is my next question: Does the amount of gluten present matter? For example, if the main food is fish, and it was just seasoned with a little soy sauce, is the level of gluten so low that I can get away with eating it?

Finally, I have a question about that gluten intolerance pill I have seen around. Does it really help? I am told that it doesn't help like a lactose intolerance pill would because with lactose intolerance you just can't digest lactose on your own, where as with gluten/celiac disease it is an autoimmune disease. Is that true??

Thank you for any info/help that anyone can offer!


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ShayFL Enthusiast

Welcome!

Can you go back to the doctor that tested you and get copies of your lab work? Without that we cannot tell you which you have. Otherwise, you should go to a new doctor and request a full Celiac panel.

Honestly, if you have Celiac, this is not something to "play with" and be a "bad girl" with. The consequences can be quite grave. I know you are young right now and you probably do not picture: diabetes, Thyroid disease, rhumatoid arthritis, MS, lymphoma in your future.....but untreated Celiac can lead to these horrible diseases.

Do not play anymore....find out.....and then act accordingly.

Jestgar Rising Star
Honestly, if you have Celiac, this is not something to "play with" and be a "bad girl" with. The consequences can be quite grave. I know you are young right now and you probably do not picture: diabetes, Thyroid disease, rhumatoid arthritis, MS, lymphoma in your future.....but untreated Celiac can lead to these horrible diseases.

This is worth saying twice. If you have Celiac disease, even a little bit of soy sauce will keep you on the road to future problems, problems you can't fix once you have them.

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      Thank you so much! And sorry for not responding sooner. I've been scouring the hospital records and can find nothing other than the following results (no lab info provided): Component Transglutaminase IgA   Normal Range: 0 - 15.0 U/mL >250.0 U/mL High   We live in Olympia, WA and I will be calling University of Washington Hospital - Roosevelt in Seattle first thing tomorrow. They seem to be the most knowledgeable about complex endocrine issues like APS 2 (and perhaps the dynamics of how APS 2 and Celiacs can affect each other). His diarrhea has not abated even without eating gluten, but that could be a presentation of either Celiac's or Addison's. So complicated. We don't have a date for endoscopy yet. I will let my husband know about resuming gluten.    Again, thank you so much for sharing your knowledge with me!
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