I just went and bought groceries to prepare for my sewing weekend. The Whole Foods people are very nice to me, and open up packages to let me sample new gluten-free things. I can't tell you what a kindness this is, when your diet is so restricted and so many of the alternative foods are just nasty.
One of the many unfortunate realities of having this thing is that I spend about four times as much on groceries as I used to. On the other hand, as it is a health expense it should largely be tax deductable, although I will probably need lots of documentation on that, because in America celiac is not widely regarded (although it's getting better) as a serious illness. Anyone who knows me, and knows I will work through anything has seen exactly how serious this is with me. My not being able to work, to even sit up to read, the way my eyes twitch if I eat contaminated food so my body stops absorbing vitamins -- everything. I'm never off my feet. This got me for months more or less, and now it's constant vigilence. It's had a profound effect on my personal, professional and inner lives in a way that makes me utterly, utterly angry.
Many of you have asked me what I eat now. One of the ironies about having to shop at Whole Foods to get most products I can use, and having to have things mostly made by smaller producers is that I eat better in general -- organic, no additives, less refined sugar, etc.
Thanks to wheat-free soy sauce, I eat a lot of sushi. Larabars are also a staple. Corn chips are used for everything from hummus (which I eat lots of) to peanut butter (which is hard to find in a non-contaminated version). Oddly, I've largely lost my taste for meat in all of this. I still enjoy it occassionally, and it's one of the safest things I can eat, it just seems I rarely do anymore; I've been told this is common, as my body is not being interfered with anymore as it tries to absorb what I do eat. I also don't have accute citrus or sugar cravings anymore, nor do I find my body pining for wheat-based things.
While I've gained back a lot of the weight I lost in this ordeal, the fact remains I'm at my base weight from when I was 19 -- that is, 103lbs as opposed to my adult weight which has been between 110 and 115. I'm very fine boned, and this doesn't look terrible on me, but this isn't really what my body wants right now -- it's just it's all it can do. I am accepting of it, largely because society doesn't particularly penalize being too skinny and because my internal landscape is so much younger and more male than my external one -- I don't really mind the physical results. But it's hard to be this 103lbs as opposed to the strong, wirey 103lbs I was back then. I'll probably try to go to a nutritionist soon, but unless I make it my only job, the weight might not be something I can gain back.
I have to google about foods constantly to see if they are safe. In doing this, I'm bombarded by information about celiac from sources good and bad. This can be hard. Celiac disease is associated with higher risks of some cancers (although whether this is triggered by eating gluten, a pairing of a genetic trait, or the nutrition absorption problems, no one knows), and there are some neurological associations with it -- particularly in childhood onset cases. However, every time I want to see if I can eat something, it sucks to bump into the litany of things I'm supposed to worry about now -- cancer, epilepsy, infertility and more. It is very tiring. I should also note here that celiac is largely considered a disease of women (as most auto-immune diseases are) although statistics don't actually seem to support this significantly. Additionally, studies show that nearly 50% of celiacs have approximately 30 doctors visits related to celiac symptoms before receiving a diagnosis. You are the only advocate for your health.
On the other hand, I am doing much better about not lamenting things I can't have. Although the snacking issue can be the toughest, like when there's a bowl of popcorn on a bar and I don't know what's in it.
The more I learn about celiac, the more I'm sure I've had this my entire life, and it just took a while for my former cast-iron stomach to be effected by it. My inability to gain weight and mental health issues throughout my life are just two of several clear signs including skin problems, constant snacking, and the fact that the nature of my type of heart murmur is increasingly considered to have a neurological link as well.
This is tiring stuff. And pretty minor as compares with many of my friends here and elsewhere with chronic medical concerns. But it is like crossing a river and being told you can't go back, and back over there are the living and over here the living too, although so many, even those involved, seem less inclined to believe it. I think, perhaps, this is a poor metaphor in a world where travel is easy, but that is the point I am trying to capture. It seems like it should be easy not to live in this land of without -- it is so easy to do everything else; I have a box smaller than a pack of cigarettes that let's me talk to anyone anywhere in the world anytime I want, afterall. But there's nothing for this, and we're spoiled, and that makes the acceptance of it hard.
And in a way, I'm glad this happened to me, because I think I needed to know I could survive in these borderlands too.
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