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Help For A New Celiac Mom, Please?

tinajayne

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tinajayne Newbie
tinajayne
Posted

This is a truncated version of what is going on... it's too long to tell you the whole story.

My son over the years have had multiple TTG tests. In the beginning they were positive and his pediatrician at the time told me the least invasive option was to try a gluten free diet. We did and it was very successful. Tested him again (while on the gluten free diet) and his test was in the normal range. His symptoms went away and he felt better. About 2 years ago my now ex-husband decided to take our son off of the diet (without notifying me) He started getting sick and I found out by accident that he was eating the very foods that he should not.

Fast forward to now... I finally have primary custody of our sons and am now in the process of getting my son re-tested. His ttg levels were once again elevated but the new pediatrician said he had to have a biopsy to confirm. I understand that, but the GI was claiming that the latest ttg could have been a false positive. I don't think that it is and want to know if anyone has had a test that was positive while eating gluten, negative while gluten free, and then positive again but still not celiac disease? What are the odds of that?

I am so confused and waiting for the results of the biopsy that was done today and the results won't be in for a week.

Thanks in advance for your comments.

Tinajayne

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mushroom Proficient
mushroom
Posted

Hi Tinajayne, and welcome.

I am a little confused by your post. I am assuming it was the celiac panel ttg tests that were run, although I don't understand the first doctor's comments that the least invasive option was to try a gluten free diet; my best guess is that he opted not to do the biopsy for confirmation of celiac (probably because your son was little) and wanted to see if gluten free worked. Obviously it did,which in and of itself is confirmation,and everything was fine until your ex unilaterally decided to give him gluten again. Now that you have custody, and can keep him gluten free, why are we suddenly doing testing and biopsies again? The negative ttg test while he was gluten free would be what you were aiming for--for the body to stop making the antibodies to gluten. That the ttg test is positive once again when he is eating gluten is no surprise at all and confirms the initial diagnosis. Most of us here have never heard of a false positive celiac diagnosis, though there are plenty of false negatives. So that's why I am confused.

No matter what the latest ttg test or biopsy test results say, you know he should not eat gluten. Period. End of story as far as I am concerned. Presumably his initial pediatrician gave him a celiac diagnosis with the positive dietary response??

ravenwoodglass Mentor
ravenwoodglass
Posted

Hello and wecome. I do not have much to add to Mushrooms answer other than to say that I agree completely. Your son has already been diagnosed. I would get him back on the diet ASAP.

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