The nurse from our pediatrician's office called today to give me the results of Hannah, Emma, and Toby's celiac screening. She didn't understand it all, so she's sending me a copy. All she could say was that the lab indicated that Toby and Emma have genes that put them at high risk of developing celiac disease, but blood work said Emma probably doesn't currently have it and Toby might. Hannah's genetic screen said she was at "extremely high" risk of developing celiac and blood work indicated she almost certainly already has celiac disease (tTG IgA was 60, with >10 being positive for celiac).
This might explain Toby's perpetual diarrhea (something our recent trip to the allergy doc couldn't explain), and Hannah's borderline "failure to thrive" state (she's dropped from the 70th to below the 10th percentiles in weight and her height has nearly leveled off). The allergist assured me that Toby probably just has "chronic diarrhea of infancy" and it will go away eventually. Hannah's pediatrician has repeatedly assured me that Hannah's severe growth drop-off is probably normal. Naomi's original pediatrician didn't see any reason to test her for gluten-sensitivities. I guess I'm glad I got a second opinion on that!
So the tally is: two kids with current celiac disease, one who might have it currently but certainly has high genetic risk of developing it, and one who doesn't likely have it now but has high genetic risk of developing it. Matt and I can't afford testing on ourselves right now (one day he will have a job...), but I think those kinds of genetic results really show that at least one of us definitely is passing that gene on to the kids, and Hannah's "extremely high" genetic risk I think means that she has two copies of the celiac-linked gene. If I'm right about that, then both Matt and I may have that gene. I have to wait until I get the results in my hands and can interpret them further. I really need to discuss this with Naomi's pediatric GI doc to see if she will diagnose all the kids on the basis of Naomi's biopsy and the other's genetic results. It would seem silly to put them all through biopsies.
I feel the need to insert here a loud "I AM VINDICATED!" (maybe) to all the doctors who told me in high school that my chronic stomach aches and fatigue were in my head. Also insert here nasty looks at Dr. Thomas who said to my dad, "Maybe she's just a wimp," Dr. Somebody from Ames who told me I was a "picture of health", Dr. Someone-else from Mayo Clinic who said he wasn't impressed with my symptoms, and Dr. Olberding who put me on Paxil...........Okay, I feel better.
I think I see a completely gluten-free house in our future. On the upside, maybe better health is in our future too--that would be a nice change.