Saturday, March 31, 2012


Ever since I got sick last year I've been reading a lot of medical literature. It was not particularly helpful before I was diagnosed because there was so much to go through that I couldn't figure out what I had. But even when it wasn't helpful it was comforting/empowering to do something. As an aside, I think is one of the best arguments for more free public access of the medical literature, which holds even if we can't assume that the general public will understand much of the literature. Since I've been mostly better, a few things just didn't add up (I think the diagnosis I got was the most accurate one, but some side things didn't make sense) and I still perused the literature occasionally. Of course, after diagnosis I could be more targeted and start to understand some things in this smaller section of literature. A couple of months ago, after talking with a family member who has Celiac, I was looking at the literature again and I saw some evidence that, if I had Celiac, would explain several of the loose ends.

So, even though I've been feeling almost completely normal recently, I tried going gluten-free. At the same time I made an appointment with a doctor, but it wasn't for a couple of weeks. After just a few days I started to think I might feel a bit better, and then in a week or so it was clear. I got the doctor to do a blood test, even though I hadn't been eating gluten that week. I knew it would make the test less accurate but I figured if I tested positive it would be a win-win and I wouldn't have to go back on gluten to get tested. But I tested negative, and my new rheumatologist (I had to switch rheumatologists for reasons that are not relevant to the current discussion) doesn't want to do further tests. So I have a double blind test going on right now (a friend made samples of various flours for me and sealed the key to which was which, and my husband has been adding one of them to my food once a week), which is recommended in the literature. It's possible I have a problem with wheat that is not Celiac (there is increasing agreement in the literature that people can have gluten intolerance that is not Celiac, and of course there are wheat allergies), but I'm pretty darn sure there is a problem, and hopefully I can be more sure after this test.

But whatever I have, initially I was elated to be feeling so great. Now I am just relieved and extremely grateful. My baseline idea of what being healthy was like was slightly off, meaning that now I feel even better than was typical for the rest of my entire adult life (although back more than 5 or 6 years ago the memory is fuzzier and it's hard to really compare). I can concentrate better too, although that's perhaps simply related to the fact that I'm not hungry all the time. It's sort of sad that I didn't figure this out earlier, but mostly I'm just glad I know now. It doesn't seem like a big deal on a day to day basis (I wasn't feeling that bad before), but in the long run I think this might be really life-changing. Maybe it's presumptuous of me to think that I understand the underlying meaning of the following lyrics, or that I know how I'll feel in the long term about my newfound good health, but I'm gonna go ahead and say that this represents my feelings including my inner celebration of this change:
It's "not a victory march, it's a cold and it's a broken hallelujah".

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