rm | LJ Idol, Topic 3: The Giving of Thanks -- Bread & Poison

By any measure, I'd have a lot to be thankful this year, even if I didn't have last year, which involved a great deal of literal and metaphorical intestinal distress, as a basis for comparison.

So far, in 2007, I've gotten my first principle contract in a major motion picture (Revolutionary Road), had my first real screen time in another (American Gangster), and nabbed a 3-book contract for my HP trivia series, the first of which comes out in a week.

And that's just the nice, neat, relatively easy to explain professional stuff. It doesn't include the adorableness and adorkableness of Patty and I living together, or the completely weird moments of serendipity that paved the way for that and many of the stranger incidents of 2007. I mean, a dude in a bar was excited about the possibility of my stabbing him as that would make him real! Come on, fellow nerds who have read certain books, HOW FUCKING AWESOME IS THAT? (Fellow nerds who have not read certain books may wish to check out Ellen Kushner's Riverside books for the explanation of why this moment was so jaw dropping to P & I).

But, while most people are thinking about the turkey that goes with their giving thanks, I'm thinking about the bread. That's because I have celiac disease, an auto-immune disorder that means I can't ingest gluten, a protein found in wheat and the grains related to it (barley, rye, spelt, oats due to contamination, etc.). If I do, all sorts of hideous things happen including bleeding in my intestines and other major organs, neurological problems such as aphasia and ataxia (fun to say, unfun to have), and mood disorders (depression, bipolar-type behaviors, and sudden rages). In fact, celiac disease affects every major body system and governs everything about me from my weight to my teeth to my vision to my skin.

I've had celiac disease my entire life, but was only diagnosed last year when what seemed like a bout of food poisoning that wouldn't go away led doctors to speculate I might have IBS, gall bladder disease, hepatitis or pancreatic cancer. While doing health research on the Internet can be a dubious and often-paranoia inducing endeavor, at the point it was suggested I have my gall bladder removed to see if that would help, I turned to Google, and found an alternative theory. While doctors assured me celiac disease was rare and unlikely, I've since found out otherwise and convinced any healthcare professional I'm still willing to see of the same.

1 in 133 Americans has celiac disease. Most are undiagnosed and often misdiagnosed with other illnesses for which they endure unnecessary and ineffective treatments. They suffer with chronic pain and exponentially higher rates of various cancers, infertility, epilepsy and liver disease as well as the social stigma of a disease that makes them ugly, inside and out, and requires them to give more thought to their bowel movements than anyone really wants to.

This is my public service announcement.

Celiac disease makes people ugly.

Celiac disease made me ugly.

I grew up with yellow teeth and dentists who constantly accused me of being bullemic because of my damaged teeth and slight figure. I was afraid to go to doctors because they would accuse me of things that weren't true and only looked more true when I explained I was just somehow made like this. I had horrible skin my father yelled at me for -- surely, I was eating the wrong things. My hair was greasy. I barely had breasts until I was in college, and my stomach was always unwell. I couldn't build muscle, couldn't even do a cartwheel, and let's not even start on the brain stuff, on my moods and rages. People thought I was crazy and dismissable, clumsy and awkward, retarded because of the way in which I would trip over myself and confuse words sometimes.

But the fact of things was far more simple and elusive -- I was merely poisoning myself, day in and day out with the foods I loved to eat, and that I craved with a violence that often scared me.

"I'm starving," I would say to my mother who asked me not to snack.

"Don't exaggerate."

Of course, it turns out I wasn't exaggerating -- celiacs can't absorb nutrients properly, and those of us who are untreated are often malnourished and chronically hungry, often for the foods that will make us sicker.

So what's the treatment? No gluten. Nothing else and that's it.

It's harder than you think, because wheat is an additive in a ridiculous number of packaged foods that you wouldn't think would involve wheat at all. Sauces and soups in restaurants are extremely risky. Soy sauce contains wheat -- you'd be amazed how many people don't know that. I have to read the label on every single thing I consume, and know that things that don't even sound like wheat, such as modified food starch, may, in fact, be enough to put me in bed for days.

The good news is that things like gluten-free restaurants, breads, bakeries, pasta and even beer exist. Recently, I was even able to order gluten-free croissants from France. Slowly, slowly, I can replace not just all the foods I loved in my diet, but all the foods that have sentimental meaning to me -- like the coconut cinammon bread I ate every day in Sydney that I can probably make a decent version of with non-gluten flour.

The bad news is that all of this is insanely expensive. Foods without gluten are harder to make, have a smaller market, don't benefit from massive advertising campains and often spoil more quickly. A gluten-free version of an entree at an accomodating restaurant often costs at least several dollars more than its no gluten-free counterpart. Being gluten-free made my grocery bill triple.

Here's the thing though, having celiac disease (which is genetic, although others in my family refused to be tested) is one of the worst things that has ever happened to me. Knowing I have it though? One of the best. Knowing I have celiac disease and living gluten-free has given me back my strength, my peace, my looks and many of the gifts I was born with. It's enabled me to be a serious fencer, to survive the social demands of a career in the arts and to be an easier person to spend time with in any capacity. And while I may still be nightblind, have trouble with nutrient absorption and have years of behavior to unlearn from the decades I was sick, I am in many ways a very different person now -- driven as I always was, but now with a kindness, not just for others, but for myself.

Celiac disease has also given me something useful I can do other than be a wit -- which is educate people about the illness. That education can lead to diagnosis, to health, to reduced burdens on our medical system and to people having a greater willingness to talk about a disease that is often embarassing and/or confusing.

So I'm thankful, not because I was sick for 33 years, but because I haven't been sick for the last year and a half. And that makes all the difference.

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From:

coyotegoth.livejournal.com

I'm thankful for that, as well.

From:

lolliejean.livejournal.com

Ah. Well said. I have appreciated that you've shared your story and what you've learned. I have had all sorts of weird autoimmune illness type issues for years and changing my diet to eliminate gluten is making a difference. I'm not healed up but I'm certainly better than I was before. (After spending lots of money on medical care that didn't help at all.)

Thank you.

From:

a devotion to vanishing things

LJ Idol, Topic 3: The Giving of Thanks -- Bread & Poison

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