The gastroenterologist does two tests for celiac. One is called an anti-tissue transglutaminase (tTGA) and the other is the IgA anti-endomysium antibodies (AEA). The tTGA test is the blood test that looks for tissue damage. There can be false positives with this test, so it is good to follow up. With the tTGA, you get a number. Below 4 is normal, between 4 and 9 or 10 (depending on what I've read) is slightly elevated, and above that is high. The first time Nora's tTGA was 9. The second time it was 4.1. When Daniel was tested, his number was 70.
The IgA AEA is a follow up test. You don't get a number, you get a positive or negative. This means that your body is producing antibodies as a response to gluten in your diet. If you have celiac, this test shows up positive almost 100% of the time. If you don't have celiac, this test is negative about 95% of the time.
Nora's AEA test was positive.
Nora is my bread girl, my picky eater, my veggie hater. *sigh* I knew this would be hard news. So first I went to the pet store and bought a few more trinkets for Nora's new hamster home. Mommy guilt. Sweet with the sour. Call it what you want, but I wanted something that would make her happy following something that I knew would make her sad.
Daniel went to a friend's house after school on Friday, so I had Nora to myself for a little while. I sat her down and let her know the results of her test. Sad she was. Also, a little bit angry. She wanted to know if she needed to go get an endoscopy now. I said that at this point, since the tTGA was low, an endoscopy may not show any damage, so that the celiac may not be able to be confirmed by endoscopy. But the AEA is the confirmation. Plus the fact that her brother has it.
And then there's my other fear. I have read that "undiagnosed celiac causes the immune system to be in constant ‘turned on’ state, which can accelerate the diagnosis of Type 1 diabetes." I said to Nora, if just by changing your diet you had an improved chance of not getting diabetes, wouldn't you do it?
Nora said, "Which does Daniel hate worse, diabetes, or celiac?" She asked this already knowing that of the two, Daniel thinks diabetes is an annoyance while he'd love to get rid of the celiac. I think she also knows that her dad and I would rather deal with a simple (or not so simple) dietary change rather than being dependent on medicine.
She doesn't want to follow a GF diet until a positive diagnosis through endoscopy. Which would mean that damage is already occurring.
At this point I stepped back. It's a lot of info to deal with, especially for a girl who loves her gluten & has no symptoms. I understand. It's going to take a little while to sink in, and she needs to have that time.
Meanwhile, we've added to the hamster cage, bought some treats, and made french toast for breakfast. I'll follow up with the gastroenterologist next week, and we'll do what we have to do!
It's just so yucky. Celiyucky.