I talked to a nurse at the boys' pedi's office today about food allergy testing. I want to get them tested for celiac but also other possible food allergies. The nurse said they could do a celiac panel there but we'd have to get the rest done somewhere else. Their doctor is out of town till Monday so it'll be Monday or Tuesday before we hear back.
As I was discussing my concerns with the nurse, I said something about how I hoped I was making sense. She told me that she has an autoimmune disease, has done research of her own on the gluten-autoimmune connection, and is gluten-free herself. I almost started crying happy tears when she told me that! She really understood! There was a part of me that put off calling because I was afraid I wouldn't be taken seriously. I don't know why... My concerns have never been taken lightly there. Maybe because I feel the importance of this so strongly? I just know I was EXTREMELY relieved!
The nurse recommended I keep doing what I'm doing - avoiding obvious wheat but not going 100% GF. That way they will keep traces of gluten in their system for the bloodwork. She said the doctor may want me to do more gluten closer to when we do the bloodwork but for now to not change anything.
The celiac panel should do two things:
1. Tell us if they have celiac disease or just gluten intolerance. This is important because if they have CD, I will have to be VERY diligent about avoiding gluten! If they're "only" GI, I won't need to be as careful. I know it's not assured that it will find CD if it's there, but it's a start!
2. If either of them have CD, it's almost 100% certain that I do as well... Since I don't have insurance to cover testing me, their results can give insights into my situation as well.
So the next step... Is waiting to hear back from the pedi and moving forward from there, hopefully toward some definitive answers...