Wednesday, July 8, 2009

The Smaller Monster

Yeah, today was another wonky day. At least I didn't remember any disturbing dreams this morning- any at all, for that matter. That's something I really like about Xyrem.

That said, I did have nausea issues today- which happens every time I raise my dose, so it's both annoying and completely unsurprising. You know, maybe now is the time to explain my fun stomach issues that work to make life more complicated.

So I have Celiac Disease. Actually, the doctors found that diagnosis first- a year and a half before I came clean about my Narcolepsy symptoms (something about not wanting people to think I was crazy). Celiac Disease by itself isn't so bad as diseases go. For one thing, it's completely curable- as long as the patient stays on an entirely gluten-free diet, their symptoms (usually) go away and stay gone. By the way, Celiac Disease is caused more or less by your immune system attacking gluten as it enters your intestinal tract, which then causes lots of damage to the part of your intestine that's supposed to be absorbing nutrients. This causes you to then not absorb enough nutrients no matter how much food you eat. Plus it tends to cause skin problems and a sharp pain right under your stomach. It's often misdiagnosed as Chron's, IBS, or about ten other things. In case you don't know what I mean by "gluten"- the word technically only refers to a protein found in wheat, but the term has been extended to refer to similar proteins found in rye and barley that also cause Celiacs to react.

Gluten is in a whole heck of a lot of things. Any pastry or baked good that isn't GF (gluten-free) on purpose has it. Every canned soup that isn't on purpose GF has it. Most packaged, processed, shove-it-in-the-microwave food has it. So does a lot of restaurant food. So I'm not saying this diet is easy to follow- especially at first, it's very hard. But you get used to it after awhile, and eventually it becomes second nature so that you start wondering what's wrong with those people who eat gluten every day. Nowadays it's also not difficult to find GF bread, baking mixes and even frozen food at even the mundane grocery stores. Also, how much you can eat out depends a huge amount on how sensitive your body is to gluten. I have trouble even getting salads at restaurants because of small amounts of contamination- I tend to react easily. But I've known other Celiacs who could eat at most places after making sure no gluten went directly into whatever dish. Also, what a gluten reaction is like differs widely. For me, I get hazy (read: hazier than usual) and depressed and suddenly my energy level goes through the floor. I also get sharp pain in my intestine. Another thing many Celiacs have to deal with is other allergies or sensitivities. For me, soy makes me very anxious if I eat even a little bit. Also, shrimp makes my throat swell up, coconut does the same only not as bad, and kiwis make my mouth itch.

So for me, Celiac Disease is like the misquito that's always buzzing in my ear- I have to constantly swat at it to keep it from biting me, but it's not the many-toothed, sharp-clawed monster living under my bed, lying in wait until the next opportunity to make my life hell. My main complaint about being a Celiac is that I absolutely loathe and have always loathed cooking, and because I'm so sensitive I have to do it three times an effing day. There are only three restaurants in my area that I can eat at, and so I save them for the occasional friend or family outing. And the rest of the time it's cooking, cooking, cooking. At least I'm not all that bad at it these days. I have a feeling it would be alright if I weren't so damn tired all the time. To top it off, taking Xyrem means I'm also forced to eat low-salt most of the time. Which makes my food pretty boring, unfortunately, and I've tried to fudge the low salt thing only to have serious too-much-salt issues.

So long story short, my stomach hates me. But I've accepted that and moved on. Now if I can just get my attitude towards the bigger monster in order, I'll be set.

2 comments:

  1. While I do not have celiac's, my IBS is definitely made worse by gluten. Since I do my best to eat a gluten free diet, you have my empathy. It is incredibly frustrating at times to realize how ubiquitous wheat and gluten are in the Western diet. Having to worry about that on top of narcolepsy is rotten. Thanks for sharing, though.

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  2. Yeah, it is in just about everything- but I can imagine worse things to be allergic/sensitive to. Like corn. o.O It's cool to know that it's not just me doing the GF narcolepsy thing (or not cool? lol). Thanks for commenting, and for empathy.

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