Hi Christine,
I just wanted to update you, I recently was at Lucas’ ped gi appointment and asked about the celiac testing and he confirmed your comments that he doesn’t consider the blood test accurate until age 3 or even 4! He also said that to his knowledge you should be having gluten for about two weeks before the testing for an accurate result….so Lucas’ testing is definitely not trustworthy. The ped gi said that in Lucas’ endoscopy at age 10 mos they didn’t find anything in biopsy, but that it’s also possible to miss the areas that might have shown celiac through biopsy.
Anyways, we trialed gluten and it was very obvious that it was bad. But his symptoms were so strange, just the waking crying throughout the night, but all other nights he was sleeping through for ten hour stretches (and he has regularly slept well since taking out gluten). So, we are proceeding on the gluten free diet and won’t trial again for a while, the ped gi suggested maybe a year. We trialed dairy and it seems to be going okay, he’s having string cheese a few times a week now. I just wanted to thank you again for your knowledge, and it was your comments that made me ask the allergist (we aren’t seeing him anymore) and the ped gi. I don’t want him to have celiac, obviously, but I want to know the true medical possibilities at this point, you know?
Thanks and I hope you and the children are all doing well.