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stbakjj

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stbakjj Newbie

ok so im new here and just have a question for everyone. my son is diabetic and is tested for celiac once a year. the 1st blood test came back positive, so a few months later we did an endoscope. that came back neg. the doctor told us that it still didnt put us in the safe zone but not to worry and come back in a year. instead of waiting we went and got the gene test. the doctor told us that he doesnt have celiac but he has the gene which means he will probably get celiac at some point in his life. they told us to just let him eat normally and watch for any symptoms. so i guess my question is is this good advice? he has never had symptoms and hasnt started showing any as of now. should we test him every year or just hang out and wait? just confused and looking for anyone who can help!! :unsure:


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CarlaB Enthusiast

If the blood test came back positive, he is reacting to the gluten, it just hasn't damage the intestine yet!! What you are doing is waiting till there is damage. I don't know why docs think this is the "right" was to test -- seems to me that if someone is reacting to gluten the doc would want them to PREVENT the damage! In all other diseases -- heart disease, cancer, etc. -- we talk about prevention, except celiac! :blink:

Okay, a little sarcasm there, sorry ... I'd take him off gluten because of the blood test. Why wait?

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jerseyangel Proficient

Hi and welcome to the board! :)

I agree with everything Carla said--why wait until there is visable damage? I would definately begin the gluten-free diet now. Plus, the endoscope/biopsy can always miss damage, especially in the early stages.

Nancym Enthusiast

Most doctors don't/aren't recognizing that there is a phase of the disease before celiac. We call it gluten sensitivity. Your risk of autoimmune disease, cancers and other things are a lot higher. I suggest going to enterolab.com and reading up on it. Another source I recommend is the book "Dangerous Grains".

aprilh Apprentice
  stbakjj said:
ok so im new here and just have a question for everyone. my son is diabetic and is tested for celiac once a year. the 1st blood test came back positive, so a few months later we did an endoscope. that came back neg. the doctor told us that it still didnt put us in the safe zone but not to worry and come back in a year. instead of waiting we went and got the gene test. the doctor told us that he doesnt have celiac but he has the gene which means he will probably get celiac at some point in his life. they told us to just let him eat normally and watch for any symptoms. so i guess my question is is this good advice? he has never had symptoms and hasnt started showing any as of now. should we test him every year or just hang out and wait? just confused and looking for anyone who can help!! :unsure:

Okay, so I just don't agree with that dr. at all!!!!! I think if he tested positive and has the gene you will be setting him up for failure to keep feeding him wheat. The symptoms come on slow and are a lot of times unrelated (by the dr.s) to celiac. It's very hard to diagnose. You may even notice his diabetes start to improve once you get him off the wheat. If that were my child, I would just go ahead and put him wheat free. You can do so much damage to your body if you wait until they "diagnose" him.

How does the gene test work? I was thinking of testing my kids.

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      @StuartJ, what brand of gluten-free flour did she use?
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      I am her husband, we have been married for 28 years
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      So, @StuartJ, are you @rjane's celiac spouse?
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