I have the genetic marker for Celiac Disease

Friday, October 1, 2010

I received a call a few days ago, and my gastroenterologist shared some information with me that I was both expecting and fearing: I have the DQ2 genetic marker that is associated with 95% of people with Celiac disease. I now know, with 99% certainty, that I have Celiac. You see, I have the genes that predispose me to having Celiac disease, but we don't know at this point if the genes are "on"- for lack of a better description. Kind of like how you might have the gene for breast cancer, but you may never develop it. Well, when you have the DQ2 marker, as I understand it, you have anywhere from a 36%-54% chance of eventually turning "on" those genes due to some stress (emotional or physical) that flips the switch. Then you start to have all the symptoms- like all the ones I've had since I was young, and continue to have when I accidentally ingest something I shouldn't have.

Now, it's really only my true gut feeling (pardon the pun) that leads me to believe that the genes were "on" when I stopped eating gluten. I have a follow up appointment with the gastroenterologist on this issue on Monday, but here's what I think is going to happen.

Doc: You know, we don't really know if you had any reaction to gluten before you stopped eating it.
Me: Yeah, I get that.
Doc: So in my mind, you should be trying to eat it so that we can establish whether or not you have the immune response to gluten. If you don't, you should just eat bread.
Me: Right. That sounds like a real hoot, the whole "eating it and potentially signing up for being ill for weeks on end". Let's do that.

Um, no. Mr. Pick it Up is begging me to give it a whirl so I can know, but it's more than just a blood test. I figure I would have to eat a piece of bread every day for a month, then get the blood test, then continue to eat it while it slowly damages my intestines (intestines, I might add that have had a full year now to repair themselves- I had my first almost-normal iron reading since as long as I've been measuring it!!!) so that I can ultimately have a biopsy where the damage will be visible. Then what? Then I'd go on a gluten free diet for the rest of my life. Oh yeah, I already did that.

I don't know. A very very small piece of me is curious about the 1% possibility, but a few things are holding me back from investigating:

1) I don't know many mommies who can sign up for a self-imposed sick leave.
2) Just this week on Tuesday, I had a gut cramp that was so bad, I thought I would pass out or throw up. I was at work shaking, sweating and in agony. We called the ambulance. It resolved itself but the pain was like going into labour - except from nothing to crowning in ten minutes. They couldn't say what happened, but could it have been gluten? Possibly. I've also been nauseous on and off since then. My house is a bit of a mine field of the kids' and husband's gluten-filled foods...you never know when a few crumbs can do you in. Anyways, it's something I'd rather not repeat, if you know what I'm saying!!!
3) If the chance is approx 30-50% that eventually I will get really sick and need to come off gluten anyway, why would I put myself through that???Again???

If anyone has a good argument one way or the other- please please please speak up. I'm listening.


Preppy Pink Crocodile said...

No way, momma! You finally have your body working again and you've mastered a GF lifestyle. It's not like you are on an extreme diet. You're gluten free- who cares if you don't have a piece of paper to verify avoiding wheat. You know your body far better than anyone else.

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