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How To Proceed With Son

Blackbird

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Blackbird Newbie
Blackbird
Posted

Hello, I am new here and love all the information on these forums.

I am gluten intolerant with only a negative antibody test to show for it. The test was done after I had already been mostly gluten free (except for CC which I wasn't careful about for a long time) for several months. I never did a gluten challenge because the slightest bit of gluten makes me ill and I can't bear the thought of intentionally eating it again.

Fast forward a couple of years... I am getting more and more sensitive to CC. My son, who is now in kindergarten, has some significant attention issues but does not fully fit the profile for ADD or ADHD. Incidentally, his paternal grandfather was dx'd celiac about 10 years ago. Since my son has gluten intolerance on both sides of his family tree, I decided to have him tested last week - and his antibody test came back negative. He is well nourished, not anemic, in the 50% percentile for weight and height. He complains frequently of stomachaches but doesn't have constipation or diarrhea, and he gets growing pains in his legs at night. Because of these symptoms and his attention issues I think I would like to do further testing but there seem to be a lot of options. Would you recommend a gene test? Stool test? Both? I'm at a loss. I think whatever I have done on him, I will do as well and probably DH also, so it will be a chunk of cash - I want to choose wisely.

Would appreciate any advice and experiences you would like to relay. Thanks in advance!

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Cara in Boston Enthusiast
Cara in Boston
Posted

Which tests did you have done? My son (6) tested negative on all the IgA tests, even though he has enough. It was his IgG tests that came back questionable. He had very few symptoms (most behavioral) so we weren't sure if we should move ahead with the biopsy. Turns out, his biopsy showed that he has celiac. If he had only been given the IgA tests, we would have never known there was a problem.

Cara

ravenwoodglass Mentor
ravenwoodglass
Posted

This is just my own opinion but I would go with Enterolab stool testing for antibodies. Do know that you need to be eating gluten for any of the testing to be positive as antibodies are what they are looking for. You seem to already have the answer for yourself, gluten makes you ill if you eat it. Enterolab can also do gene testing. Enterolab does not diagnose celiac but if you are making antibodies your body does not want gluten. Some places only test for 2 of the celiac associated genes and there are up to 27. Gene testing in itself also is not diagnostic as people can have the genes and never develop celiac and people can have celiac and not have the most commonly associated genes. IMHO the best test is to delete gluten from your diet and then if there is still doubt add it back in and see if symptoms reoccur. You do have to be strict on the trial as even a very small amount of gluten will keep your reactions going or cause a good one day lousy the next sort of thing.

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