2 Yr Old Having Diarrhea Again, Blood Work?s

[aidansmom]

To make a long story short, my son had 2 of the 4 antitbodies elevated (don't know which ones) and had shortened cilia on his biopsy. Had his first solid poop ever one week after going gluten-free. I also went gluten-free because I was nursing him. He did great for 10 months and then I weaned him 2 months ago. For the last 2 months, he's back to his old symptoms. He's stopped growing and 3-6 loose stools/day. We've played around with diet and nothing works. Same diet he was on for the last 10 months. He's not on the charts for height or weight so we are getting quite concerned.

We recently moved and saw his new GI dr again today who is awesome!! He gave me copy of an article to be released in the JPGN (written by a different institution). It discussed TTG is the most accurate test with EMA a close second but has observer error. AGA IgA and AGA IgG is no longer recommended because it is not accurate. We found out today that my son's TTG was 0 prior to diagnosis. His IgA was normal, so that's not the reason. The doctor had planned on measuring a TTG today to see if we were unknowingly giving him gluten. He drew it anyway (even though it was zero when he was getting gluten) and also drew the HLA and doing stool cultures again. We are wondering why it was negative to begin with when he was getting lots of gluten if this is the most accurate test?

My question - anyone else's child have a zero TTG and diagnosed with Celiac Disease. If so, how do you monitor it?

I hope this all makes sense. Any thoughts would be appreciated?

Thanks so much,

Julie