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rmBy 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.
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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no subject
Date: 2007-11-21 08:28 pm (UTC)no subject
Date: 2007-11-21 08:40 pm (UTC)Thank you.
no subject
Date: 2007-11-21 08:59 pm (UTC)no subject
Date: 2007-11-21 09:15 pm (UTC)I didn't know about a lot of things like Celiac disease until I worked at a health food store a few years back. It really taught me a lot as I helped people shop for their various gastro-intestinal-safe diets in our store.
It is getting more and more press, though. I've seen it around in magazines, and on the lips of people more often than a few years ago.
Hurrah for being more healthy, as well as having validation for something that you knew was wrong.
no subject
Date: 2007-11-21 09:26 pm (UTC)I recognize everything you write. People have been telling me I am anorexic, bulimic, or just plain a baby for complaining about stomachaches. Hairloss, bad skin, can't gain weight, no breasts, tired all the time, bad teeth, etc.
I have just been diagnosed last month and had symptoms all my life. I am finding the diet hard but I know I can do it. The money is a problem, but I am trying to cope.
Thank you for writing this. Some of the people I know still don't understand how serious Celiac disease is. I hope this helps.
no subject
Date: 2007-11-21 09:34 pm (UTC)FYI, all the Glutino products are pretty great. A lot of the other brands sort of suck. Also Whole Foods has a lot of Everyday Value Gluten-Free cake/cookie/muffin mixes now that are well priced and pretty good.
no subject
Date: 2007-11-21 09:37 pm (UTC)It is definitely getting more press, I think because of the possible link between gluten consumption and/or celiac and autism. Whatever makes more food available to me to eat, and means less people will make assumptions about me being "picky" or "on a diet" when I ask questions at restaurants, makes me happy.
no subject
Date: 2007-11-21 09:44 pm (UTC)I'm glad you feel better these days. Knowing WHY something is making you miserable is better than just thinking you drew the short straw for this round of life.
no subject
Date: 2007-11-21 09:51 pm (UTC)thinking you drew the short straw for this round of life
You know, while I never put it this way, that was exactly what I thought for like always.
no subject
Date: 2007-11-21 09:51 pm (UTC)But the rest--what a wonderful thing to be thankful for. I'm happy for you. Feeling better for the first time ever must be incredible. I have a lot of weird health issues and my mom always tells me, "You're going to be amazed when you find out what it feels like to not feel like you do now." It must feel so good for you!
no subject
Date: 2007-11-21 09:53 pm (UTC)no subject
Date: 2007-11-21 10:11 pm (UTC)It is yet another sign of the diferences in attitudes towards health care and what a "socialized" medical system can mean when I can tell you that one of my dearest friends lives overseas and she can get a government subsidy for her young son who probably has celiac. It's in the family and he appears to fit the syptims. Right now she is debating the choice of treating him as celiac and not getting testing done and getting the money, or, feeding him gluten for three months, watching him suffer, getting the tests done with gluten in his system and getting the money. He isn't six yet, and she hasn't decided what to do.
Best wishes from a fan,
Ekatarina
no subject
Date: 2007-11-21 10:16 pm (UTC)Yes, if I eat gluten for 6 months, get an intestinal biopsy, then go off for 6 months, get another, and then start gluten AGAIN for a third biopsy, then I can tax deduct my medically necessary food, but there is NO WAY I am doing that shit.
no subject
Date: 2007-11-21 11:26 pm (UTC)no subject
Date: 2007-11-21 11:39 pm (UTC)I was just noticing today gluten free products at Whole Foods and thinking about you.
no subject
Date: 2007-11-21 11:44 pm (UTC)no subject
Date: 2007-11-21 11:47 pm (UTC)In other words celiac disease has made you who you are -- and you, m'dear, are wonderful!
no subject
Date: 2007-11-22 12:53 am (UTC)I know a couple of other people who have this, and I've seen articles in the paper about it, and about how more food are available. So I'm sorry they're expensive, but glad you have more things you can eat.
Happy Thanksgiving.
no subject
Date: 2007-11-22 01:16 am (UTC)It sounds like everything is on track for you now, so cheers to a happy ending.
no subject
Date: 2007-11-22 01:33 am (UTC)no subject
Date: 2007-11-22 04:27 am (UTC)no subject
Date: 2007-11-22 06:13 am (UTC)no subject
Date: 2007-11-22 07:15 am (UTC)Recalling a talk we had about how non-celiacs can often benefit from less gluten, I have recently cut white bread (and refined sugar, but that's a different story) from my diet, and I eat pasta with gluten only sparingly. Interestingly, my appetite has decreased significantly and I feel healthier. I also seem to be losing a little weight (and keeping off the four inches I dropped after two body wraps). Neat!
And this post reminded me that I've been meaning to tell you about some fabulous gluten-free blueberry waffles I have found. I guess I hadn't bothered 'til now because I suspected you knew about them. I think Amy's makes them, but I will check the package because they are SO tasty. I actually prefer them to 'regular' waffles!
no subject
Date: 2007-11-22 03:23 pm (UTC)no subject
Date: 2007-11-22 03:43 pm (UTC)