My daughter went to the endocrine doc for her first visit since dx. I guess one of the diseases that can exist with T1 is celiac's. So much so, that it is a routine screening. My daughter showed positive antibodies for celiac's and now has to have an intestinal biopsy. Of course, she is horrified by all of this. She was only dx in March. We felt like we were finally getting back to our new "normal" and now this:( Does anyone have any info htat could help us?
We have not gone through this process personally but know several people that have been involved with the issue. What I find so strange is how different doctors treat the matter. A niece was displaying syptoms of celiac so she was put on a gluten-free diet. No biopsy; no nothing according to her dad. The symptoms did go away once she stopped eating gluten. Others have had elevated antibodies, had the bioposy and went on a gluten-free diet right away. At least one friend's daughter has elevated antibodies, has had two biopsies, and is till not on a gluten free diet. It seems like they are prolonging this forever (over a year). It's unclear why they don't put her on a gluten-free diet, although she does not display symptoms. From an outsider's perspective it appears that how a child is treated depends very much on the doctor, whether symptoms are displayed, and the level of antibodies. Sorry, I don't have any words of wisdom.
My daughter (5 years old) had this procedure done about a month ago. The procedure itself was quick. Only about 20-30 minutes. Althought we had to wait an hour before as with most hospitals and a couple hours afterwards.
She wasn't allowed to eat after midnight the day before, so we stayed in a hotel near the hospital(1hr from our house) and scheduled the earliest possible appointment so she wouldn't have time to get worried and hungry in the morning... My wife and I were worried, but everything went smoothly. We made sure the anestesia team was aware of her diabetes... When we first arrived her Blood Sugar was low, so we gave her a sucker and took off her pump. Then after the procedure she was high, but we ajusted it accordingly. By the time we got back home, she acted as if nothing happened and played with her friends.
She does have celiac, so it's been learning all about what foods to avoid for the last month. Many alternatives out there..
Stay positive. And if your daughter does in fact have it, It has no harmful effect as long as she avoids gluten.
Hope this helps.