Life with chronic health conditions and no health insurance is interesting.
Celiac disease is pretty much a condition of maintenance. There’s no cure and the only preventative measure is avoiding eating or drinking gluten (wheat, barley, rye, and oats). Gluten is everywhere. Beer and bread are bad but I’ve found it in foods I would never have suspected, like tomato soup, sausage and lunch meats, and many, many sauces. Flour is a cheap filler and thickener so it’s commonly used, which makes the life of a celiac a royal bitch.
I was diagnosed with fibromyalgia first, and celiac disease a few months apart, in early 2010. Both came on the heels of a lot of effort on my part to document and self-diagnose, to some degree, my own condition. One of my knees was so inflamed that I limped noticeably for months and at the apex I had to crawl up stairs on hands and knees because of the pain. My rheumatologist diagnosed that as one of the symptoms of my fibromyalgia and that was that.
I had good doctors then, that supported my efforts to self-diagnose, within reason. I did my own testing with diet changes, for example, that led to discovering my sensitivity to wheat, and they ran medical tests to verify and confirm. Science. It works, bitches.
I’ve been gluten-free, aside from the random and mostly rare accidental glutening, for about eighteen months. The first six months or so I felt great; my knee inflammation disappeared completely and many of the other symptoms associated with fibromyalgia had eased up as well. That general sense of well-being began tapering off, though. I was as strict, if not more so, with my diet, but nothing seemed to reverse that trend. Complicating matters were my symptoms of fibromyalgia, which worsened.
My sleeping pattern became erratic, when I could sleep at all. Lethargy was my lonely friend and I constantly worked through a teeth-gnashing mental fog. On two occasions, minimal exercise caused such a crash that I slept for days. We worried about my health, my ability to function, to work. I’d spent my late nights reading through journal articles, medical studies and message forums about fibromyalgia and Celiac symptoms and treatments.
A month or so ago, one of my online friends whose been through some medical issues blogged and, in the comments said something about not ruling in fibromyalgia without further testing, especially with celiac. My knee jerk reaction was to get upset (sorry D. <3) but it got me thinking. I realized she was right, especially given the proclivity of doctors, despite their best intentions, to misdiagnose fibro in the presence of celiac.
I woke from sleep one night and in a moment of clarity remembered that, a few months prior to my celiac diagnosis, I nearly had scurvy and other assorted vitamin deficiency-related issues. The doctor put me on a daily regiment of vitamins that, a few months later, put my levels back to normal. When we realized I was celiac, I (or we) thought that must be the cause and I stopped taking the vitamins.
The kicker about celiac: it damages the lining of your small intestine, sometimes permanently, but it can take years for it to fully recover once you’re gluten-free. This prevents the absorption of nutrients from the foods you eat. Essentially, I was malnourished even though I’d been eating a healthy, gluten-free diet.
Whoops.
I’m three weeks back on my vitamins (for the curious: 500mg vitamin C twice/day, 1,000 IU vitamin D twice/day, 50mg zinc once/day) and I feel remarkably different. The mental fog has cleared. I’m back on a regular, consistent sleep schedule and my energy levels are starting to return.
It’ll be summer before all the paperwork is done and I can see a doctor regularly again and get regular check-ups. That sucks, more than a little, but this close call reminded me of something I’m a fan of: body hacking. Safely, of course, but we are essentially a biological computer in a wetware exosuit. A biomech, if you will.
Done smartly — scientifically — who knows what you’ll discover. I’ve been doing it out of necessity, in a small way. Humanity has been finding ways to do it since forever (care for a cup of coffee?). Also worth mentioning, The Future Fire just announced a call for submissions for their thematically-related anthology, Outlaw Bodies.
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