Monday, September 29, 2008

Going Gluten-Free

Around the time I finally got the diagnosis of vulvodynia from my gynie, my aunt suggested to my mom that my mom's apparent arthritis pain might improve if she reduced or eliminated the amount of wheat she ate. My mom stopped eating bread and other foods containing wheat and within just a couple days she found her pain had significantly relented.

Encouraged by her results, I tried eliminating wheat from my diet. Two days in, the constant burning I had felt since the vulvodynia began was fading away. I still had residual pain that worsened when I did anything involving that area (which, you may not realize, includes things like laughing and coughing), but the acid burn was receding!

I started following a gluten-free diet, and I followed it very closely. I noticed that if I happened to eat gluten, about 24 hours later, my crotch would ignite and burn for four or five hours. Not only that, I'd also get pains in my shoulders, wrists, knees -- basically all my joints, pain I hadn't noticed before I'd changed my diet.

Over time, I found that I had more energy, and that accidental glutenings would have me collapsed on the couch. My crotch continued to improve, but only so much. Later in the summer, I tried removing corn (in its obvious forms -- corn of some form is in everything), and I found that when I reintroduced it, it gave me body pain similar to gluten, though its affect on my crotch wasn't as bad.

So over several months I tried tweaking my diet to see if any other changes would help me out. I had always had an instinct about refined sugar, so I cut it out and, lo and behold, within a few days I was peeing more easily! Still pain, but better flow. I also cut out dairy and soy at times, but they were largely out of convenience -- when you eliminate gluten, corn, and sugar, you pretty much have to make everything yourself.

I was able to stick to the diet because I believed that if I kept to it, eventually my pain would retreat entirely. If only bad food gave everyone pain, dieting would be so much easier!

But as I mentioned in my last post, my willpower collapsed late this summer around the time I visited the specialist. The week leading up to the appointment I lost it. I was careful to avoid gluten (by now I know where to suspect it), but everything else no longer applied. I gorged on mint chocolate chip ice cream, brownie mix, candy, Nutella, gluten-free corn-filled cookies, white mochas -- anything I could find that sounded tasty but respected the gluten law. And though I felt a little worse eating all that stuff -- and my intestines got pretty ticked off -- it didn't end the world or kill me.

I kept up the indulgence, mostly with Nutella. On Labor Day, I had corn on the cob, baked beans (corn syrup), a Pepsi (corn syrup), ketchup (corn syrup), bratwurst (corn syrup -- told you corn was in everything), and it was delicious. Then I got sick for three days, literally nauseous every time I ate, headachy, bad-gutty. Whether it was the amount of corn that did it or something else, I have no idea. I know no one else at the party got sick.

It was probably a good thing I felt awful after Labor Day. It gave me a non-crotch, non-body-pain reason to take some steps back towards a better diet. Because really, all this time, I've viewed the diet as a sort of voodoo science -- how can food significantly hurt my body in ways that are not traditional allergies when no one else seems affected?

In February, I went on gluten for three weeks in order to get a Celiac test, and if anything has convinced me of gluten's effect on my body, that was it. I felt awful the whole time and for weeks after. I couldn't get enough sleep, I ached everywhere, and I became severely depressed. And oh yes, the crotch burn. The Celiac test came back negative, but because I have a high-risk gene for it, the doctor wanted me to get a biopsy done as that's really the only way to diagnose it for sure. That's not going to happen. It would require eating gluten for three or so weeks again, and I refuse to do it.

So now to convince myself -- after I've already learned the lesson -- that improvement is possible with an improved diet. Now to stock up on my favorite gluten-free snacks (read: peanut butter) and get back into cooking. to let myself relax until my faith returns. My friend tells me that no one can be expected to keep to my diet, and she's right. Atkins, vegetarianism, veganism, it all looks like hedonism to me. But oh, how much better eating right makes me feel!

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