Friday, August 14, 2009

The End of Wheat

When I was 15, I was deeply in love with someone who didn't really care that I existed, and it made me change the way I ate. I didn't go on a diet to lose weight. I became a vegetarian. And then when I was seventeen, this same boy became my boyfriend. And he was a pretty crappy boyfriend. But I was a vegetarian for three years, until I finally went to college, we broke up, and eating sausage looked like a Declaration of Independence. I never ate meat once in the three years I was a vegetarian, though everyone advised me I would fail, or die of malnutrition, or whatever. It's a surprising accomplishment considering that I generally eat whatever sounds delicious and seem to have no willpower whatsoever.

Well here I go again. This time, however, I am giving up wheat. My first thought on this is "NO FARMER'S MARKET PIZZA ?!?!?!!!?!?!," because truly, that has been one of the great joys of my summer. But I am giving up wheat because it contains gluten.

I am not one to jump on dietary bandwagons (except for the cabbage soup diet, which I did with my friend Jackie as a cleanse and a demonstration of willpower for two weeks) and the South Beach Diet (which helped me lose 20 pounds once). Oh and vegetarianism. Still, compared to most women I know, I am relatively diet-free. And I enjoy this, because I enjoy food. But I am giving up gluten as an experiment for medical reasons.

I have narcolepsy. Let me explain.

If you know me and I did not happen to mention it to you, you won't know. But I have narcolepsy, I was diagnosed in 98 with a multiple sleep latency test, and I take prescription amphetamines to stay awake. Still, it stinks. I am always tired, the amphetamines make me grouchy at times, and my boss suggested to me recently that maybe I don't really have a problem and that I party too much. I told him, "if I partied too much, it would be easy to stop." And then he answered, "not if you didn't want to." And then I resisted the urges. You know. The bad ones.

I read an article in Scientific American a few days ago that convinced me that I have to cut gluten out of my diet (The picture, by the way, is from Scientific American). I had discovered the article on a narcolepsy list serve, where people were getting pretty excited about it. The article basically states that autoimmune disorders of a particular genetically linked spectrum may be created by three factors that feed off of each other: a permeable intestine that allows for proteins to enter the bloodstream not fully digested (known as leaky gut), an overactive immune system linked to specific genetic markers, and the consumption of an offending protein that the body mistakes as an antigen (disease-causing agent). This article is particularly relevant to celiac disease (gluten sensitivity- gluten is a wheat protein), as it basically identifies the mechanism that causes damage to the small intestines of people who have it. But it also provides food for thought on a number of disorders that are genetically linked to this disease, including MS, rheumatoid arthritis, ulcerative colitis, type I diabetes, and narcolepsy.

Recent studies have shown narcolepsy to be an autoimmune disease, where t-cells kill cells required for alertness. The t-cell response is created by the same set of genes that are responsible for celiac. Celiac is also produced by t-cell hyperactivity. Neurological forms of celiac suppress neurotransmitter activity in the brain, causing symptoms like fatigue and depression. It is not difficult to imagine that something similar is happening with narcolepsy, except that brain cells are destroyed. The practical difference is whether the autoimmune disorder kills the villi in your intestines, or the hypocretin-producing cells needed for alertness your brain.

I figure if I am wrong, no big deal. I can eat regular pizza again after a few months. But if this theory of disease works for narcolepsy, then removing one leg of the stool will knock the whole disease process over. I have always suspected that the root of my problem with narcolepsy is actually intestinal, one of those weird hunches you have about what is going on inside of yourself that you can't explain with physical evidence.

One of the great things about eating local food is that it is minimally, if at all, processed. Over the past few days, I have discovered that wheat gluten is in a vast spectrum of food as hydrolizers, emulsifiers, coating agents, and all sorts of things you wouldn't imagine. So cutting out gluten is not as simple as cutting out wheat and wheat products. Unless you don't eat processed foods. Enter the farmer's market! Where stuff doesn't have wheat in it unless it is made out of wheat! And where we have our very own gluten-free baker, A Better Choice Baked Goods. Beth, who runs the stand, discovered gluten-free baking as a way to help with her son's autism (interestingly, autism is also correlated to the condition of leaky gut).

I am going to give this thing 100% the way I did vegetarianism as a teenager. I feel wildly optimistic. The thought of not struggling every day just to stay awake sounds profoundly good. Being tired all of the time is a form of torture, made worse by people who don't understand that it is not an issue of laziness- not a lack of integrity- but a disability- that will some day, hopefully, be cured through a better understanding of autoimmune function.

So I am going off gluten. I am going to have a great wheat give-away. It means I won't be eating Rick's soft wheat made into a delicious scone by Cakes for Cause, or the delicious veggie focaccia at Stone Hearth Bakery, or pies from Ed's Bakery, or bagels... But it also means I have hope. I'll let you know how it goes.

Oh, and let me know if you have a good gluten-free recipe for pizza crust.



truffles said...

We have a lot of gluten-free cookbooks books at the library:

smoo said...

Thanks Truf! I am gonna need em.

Kelly said...

My husband and daughter both suffer from Celiac disease. I, myself, have just recently (last 3 months) been diagnosed with narcolepsy/cataplexy and am being treated with amphetamines and med for the cataplexy. The gluten free diet is a VERY difficult diet to stick to and can be VERY expensive. The is an awesome website that has a TON of gluten free crock pot meals, several of which I have tried. Good luck to you in your experiment...I am very interested to see what you find out. You can have a blood test drawn to check for Celiac antibodies but you must NOT be gluten free for at least 30 days before having it drawn. You may want to consider that before embarking on your new "diet". You could also sign up for the Celiac listserve on yahoo...very informative!

smoo said...

Kelly, I hope your meds help you out with the N. When I got on them 11 years ago, it completely changed my life for the better.

I am not so worried about the antibody test; I have had so many medical tests that I would rather just try the diet and see what happens! So far I have felt more alert directly after meals...