My son is 3 1/2 years old and was diagnosed (via blood test) with Celiac about 5 months ago. I was diagnosed with Celiac in 2004 as well. My son weighs only 26 pounds (he still wears size 2T clothes) and he hasn't really gained anything or grown since April of this year. He had his bloood work redone and the numbers have greatly improved so we know the gluten free diet is working; however, we can't figure out why he has no appetite and is not growing. We currently go to the Celiac clinic at CHOP and they have told us that we can keep chasing our tail or we can get an Endoscopy/Colonoscopy to rule out any other problems that might be occurring. My son did have constipation issues, but we now give him Miralax everyday which seems to help regulate him. Prior to the mirilax (even on the gluten-free diet) he would cry in pain when trying to go to the bathroom and when it finally came out it was enormous.
Anyway, I guess my question is, does anyone else have a similar experience? Being strictly on the gluten-free diet (we only have gluten-free food in our house) and still having weight gain and growth issues? If so, what else could possibly be the problem? I have severe anxiety over getting the endoscopy and colonoscopy done on him. The prep alone seems so unfair for a child. How do I know he is not just a regular 3 year old who doesn't like to eat and he will just grow at a slower pace than his peers? It is so frustrating because I feel like it is trial and error and I rely on these doctors because I don't know where else to turn. How do I know he doesn't need growth hormones?
Sorry to ramble on, but any advice would be greatly appreciated! I am so upset over this whole thing and really just want my little boy to be happy and healthy!
jaimekMember Since 10 Feb 2004
Offline Last Active Oct 18 2010 08:10 AM
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