Nicole - posted on 09/23/2009 ( 9 moms have responded )
Hi there - new here, have many questions! First, a little background. My 4.5 year old son just had blood work done showing a positive result for celiac. His results were 1616 (normal's 120). I thought it was a ttg test (I question myself because now I know other tests can be used and I'm trying to remember the lab slip from memory). It was kind of a tag along test and wasn't really expecting it to result in anything! We're awaiting a GI appointment and confirmation so we haven't done anything yet other than look up info on celiac disease. A lot of it makes sense in retrospect. I had pre-eclampsia and so my son was born slightly early (@39 weeks - not technically early but since he wasn't coming, early for him!). Despite a bad case of acid reflux, he was a good baby and grew well. He's always been tall for his age though his weight's been steadily dropping according to the charts. What set off the question in the pediatrician's mind was a question I asked at his 4 year check-up. I asked about his bowel movements and how many he seemed to have and how they'd go back and forth between diarrhea and normal ones just within a day. I wanted to know if it was normal since it just kept happening. He suggested a celiac test but we didn't push it since my son was already undergoing other tests and unknowns at the time. Turns out he had a fungal infection that affects the lungs. It's all around the area we live but most people aren't affected by it. We didn't understand why he was showing symptoms (but if he's had celiac, that would suppress his immune system and explain it). Anyway, once on anti-fungal meds, his bowel movements seemed to improve somewhat so again, I didn't think about and just thought the next time he had blood work we'd tack it on just to lay the matter to rest. Well, at the beginning of the month I took him in for unexplained leg pain and limping (another cancer scare, not fun!) and had blood drawn. Tacked on the test and here we are. So questions...
1. Any advice that you would have liked to known at the beginning.
2. Would you have siblings tested (as well as parents)? I have a 2.5 year old son and a 3 month old baby (obviously she's too young). I plan on doing a test and my husband's wishy/washy. He's really taking it hard - already grieving for the lost "American" eating lifestyle. And I think he's afraid of testing positive.
3. Dealing with relatives/friends who just don't get why your child(ren) have to remain on a gf diet. My MIL visited and we briefly discussed my son's situation and she was basically like, "Oh a little here and there won't hurt. Just when you eat a lot." This from the same woman who gave my niece a bottle of pop when she was little and one who eats fast food at least once a day. We have a civil relationship and I encourage my children's relationship with them as much as possible but I will not let them have them for a visit if she's going to be so flippant about it. I tried explaining what celiac disease is and why you have to be gf but she's the type who doesn't hear what you say because they think they either know what you're talking about already or thinks they know best anyway.
This was long. If you're still with me, thanks! My daughter's been fussing so I hope I didn't forget anything!