Sunday, January 13, 2008

Celiac (celiyuck)

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.


Everyday Yogini said...

Oh ugh. Celiyukky, indeed. Sending hugs to Mom and family....

Jillian said...

Ugh, I can't even imagine. I don't know much about celiac, but it seems to me that neither choice is great.
I'm a bit confused by the idea of changing her diet to hopefully prevent type 1. I could be wrong, but if she does have celiac her immune system is already compromised which would already put her at a greater risk for other autoimmune conditions. Once you get the final diagnosis, I would understand following the diet. But would it really prevent type 1 developing in the future? (Sorry for all the questions,I'm just curious.)
I'm sending e-hugs to help with this hard news!!!

Naomi said...

I don't know if celiac would prevent type 1. The docs don't know what triggers type one, but there's a theory that if you have undiagnosed celiac, that your immune system is always "turned on," or on alert. Perhaps this is a trigger for diabetes. Daniel had absolutely no symptoms of celiac, but he certainly had it. For how long? We don't know. Long enough to start causing damage in his intestines, but not long enough for him to have symptoms. If we had found out somehow, a long time ago, that he had celiac and put him on a gluten free diet, thereby turning "off" his immune response, would he have diabetes today? I don't know. No one does.

I'm also not willing to let Nora go long enough on a gluten diet to cause damage to her intestines. There's no reason to, with our without diabetes in the picture.

Jillian said...

Thanks for the answers. I hope that Nora can adjust to the celiac diet, I'm sure with your support and some help from Daniel it will be a little easier. Still, it really just plain stinks for you guys.

(I've responded to your JDRF comment on my blog, by the way.)

in search of balance said...

Awww. This is such a bummer. No one should have to face those kinds of dietary restrictions, especially as a kid. I'll be thinking of you guys. I hope, if nothing else, that a swift diagnosis can supersede any damage that might have come otherwise.