This is about my 8 y/o (also referred to as oldest).
In Fall 2012 she complained all the time about stomach aches. She would have to get up from the meal to relieve herself - every time, sometimes multiple times. She went from being really tall (90%) to more average (50%). The GI ran a panel and celiac came back negative. We were told that the "pain" is typical of little girls when their reproductive organs are growing and moving and they are unfamiliar with those feelings. There was a technical term, but I don't remember it right now.
In Fall 2013 her then 1.5 y/o sister was DX with celiac. (I have some questions about this too since she was basically a baby and used the same blood tests - now I keep reading how unreliable they are, but that isn't my question today.) So the oldest and middle kids were tested - both had bloodwork come back in that "questionable" area and both had negative endoscopes. Because the oldest had those other issues (at this point, she had lost weight in over a year, still had stomach pains, still relieving herself every time she ate, etc) we got the celiac DX and called it a day. She has been 100% gluten-free since 10/2013.
Now we are at today. Not every time, but still often gets up from a meal to relieve herself. Which is a key that either we are missing something or celiac isn't the issue. She hasn't really grown and is so stick thin I doubt she's gained any weight. The big thing is that the stomach aches are gone. She told me she can't remember the last time she had one.
Looking back on all this I think I was so completely overwhelmed with my baby having celiac and didn't want her to be alone. Not that I wished celiac on my oldest, but did I push this? The kids' GI is laid back and she knew that having a formal DX would help in school for both girls. BUT, if she doesn't have celiac and just has a gluten intolerance, I don't want this label placed on her. I mean, if she can go to a birthday party and eat a cupcake then she's not odd-man-out. Yes, in 3rd grade, it's a horrible thing to stick out in ways like this.
So I'm calling the GI tomorrow at 8:30a to get an appointment. I'd like blood run again - I know that the numbers will be screwed up, but that's neither here nor there. But, more importantly, I'd like the genetic testing done. If she doesn't have the genes, she can't have the disease, right?
Our house will still remain 100% gluten-free. So will lunches and snacks sent from home. I'm so hoping that the genetic testing comes back negative b/c this added stress is a lot for a kid to deal with.
Has anybody else ever looked back on your path and wondered? I feel really alone right now and hope I didn't screw up my kid.