Stupid Celiac Disease
Nov. 17th, 2009 11:37 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
deirdreI haven't really talked about how I came to be diagnosed as celiac, nor the frustrations I went through along the way, nor how serious the disease can be for some people.
My story is less dramatic than many.
Unlike someone I know, I wasn't diagnosed with anemia of unknown origin and in the hospital getting two units of blood.
Unlike someone else I know, I wasn't losing weight to the point of danger, anemic for unknown reasons, throwing up almost any food, and pooh-poohed because they thought I was bulemic. (I'm kind of proud for pointing out the root cause and helping heal that person.)
Unlike a third person I know, I wasn't going into seizures after eating.
When I was 11, my father sent me to a psychologist. It seems that whenever I visited my mother's house, I'd have gastrointestinal issues a couple of days later. I'm still pissed off that they never apparently consulted my family doctor about this.
When I was 16 and my father was gone for the weekend, I had incredible stomach pain and called up a family friend to take me to the ER. That was terrifying. I was left in an ER room with absolutely nothing done for me other than saying it'd pass and that I had gastroenteritis. I had elevated white blood cell counts, a common finding for me, but they thought I had an infection.
I had it two more times before turning 18, and I've had it, on average, once or twice a year since then.
Then there was the stupid attempt to go vegetarian and eat a lot of wheat bran. I think that lasted for a few weeks before it became obvious that it was a Really Bad Idea.
I don't recall mentioning any of the above to my family doctor. I didn't have a lot of money, and I tended to go when I did things like break bones, sprain ankles, and infections. I remember having pneumonia when I was in my 20s. Stuff like that.
So the fact that celiac disease was overlooked was two-fold: 1) I probably didn't mention useful details to my doctor on the rare times I visited; 2) I was in a faith that frowned upon chronic illness and thus I would not have even admitted to myself that I was chronically ill at that time.
After I left said faith and moved to the east coast, I found a great family doctor in Vermont, Dr. William Birge, who helped me figure out several long-term conditions: celiac disease, fibromyalgia, and depression.
It wasn't that easy, though. I'd already figured out I was probably celiac, and so we did a blood test and elimination diet to confirm (later, more intrusive tests followed). I can't remember how I came across the information about it. I'd never heard of celiac disease until I was in my thirties. I just happened across it in a search for something else, read about it, and tucked it away.
When something about barley was posted on usenet, I said that it wouldn't be a good idea if someone were celiac -- and someone who read that figured out that they were celiac and wrote me, thanking me. That was in late 1996.
I still wasn't ready to go gluten-free, but I did make a point of reducing wheat consumption. I was finally diagnosed in 1997 when my whole life fell apart after my first husband's death.
Even after 12-1/2 years on a gluten free diet (with some slip ups, not all of which were accidental), I still struggle with it every day.
I'm thinking of it today, because the last few yoga classes I've had seem to have focused on twists, which has had my innards objecting somewhat. Yet, they feel like they're working out some nasty disease afterward as my whole body feels both more healed and more ill.
I wound up spending a lot of time in bed over the weekend from this, and I'm wondering how much longer I'll get these effects from the yoga class, because I'd really like to be well enough to manage two classes a week again. Or three.
One can hope.
My story is less dramatic than many.
Unlike someone I know, I wasn't diagnosed with anemia of unknown origin and in the hospital getting two units of blood.
Unlike someone else I know, I wasn't losing weight to the point of danger, anemic for unknown reasons, throwing up almost any food, and pooh-poohed because they thought I was bulemic. (I'm kind of proud for pointing out the root cause and helping heal that person.)
Unlike a third person I know, I wasn't going into seizures after eating.
When I was 11, my father sent me to a psychologist. It seems that whenever I visited my mother's house, I'd have gastrointestinal issues a couple of days later. I'm still pissed off that they never apparently consulted my family doctor about this.
When I was 16 and my father was gone for the weekend, I had incredible stomach pain and called up a family friend to take me to the ER. That was terrifying. I was left in an ER room with absolutely nothing done for me other than saying it'd pass and that I had gastroenteritis. I had elevated white blood cell counts, a common finding for me, but they thought I had an infection.
I had it two more times before turning 18, and I've had it, on average, once or twice a year since then.
Then there was the stupid attempt to go vegetarian and eat a lot of wheat bran. I think that lasted for a few weeks before it became obvious that it was a Really Bad Idea.
I don't recall mentioning any of the above to my family doctor. I didn't have a lot of money, and I tended to go when I did things like break bones, sprain ankles, and infections. I remember having pneumonia when I was in my 20s. Stuff like that.
So the fact that celiac disease was overlooked was two-fold: 1) I probably didn't mention useful details to my doctor on the rare times I visited; 2) I was in a faith that frowned upon chronic illness and thus I would not have even admitted to myself that I was chronically ill at that time.
After I left said faith and moved to the east coast, I found a great family doctor in Vermont, Dr. William Birge, who helped me figure out several long-term conditions: celiac disease, fibromyalgia, and depression.
It wasn't that easy, though. I'd already figured out I was probably celiac, and so we did a blood test and elimination diet to confirm (later, more intrusive tests followed). I can't remember how I came across the information about it. I'd never heard of celiac disease until I was in my thirties. I just happened across it in a search for something else, read about it, and tucked it away.
When something about barley was posted on usenet, I said that it wouldn't be a good idea if someone were celiac -- and someone who read that figured out that they were celiac and wrote me, thanking me. That was in late 1996.
I still wasn't ready to go gluten-free, but I did make a point of reducing wheat consumption. I was finally diagnosed in 1997 when my whole life fell apart after my first husband's death.
Even after 12-1/2 years on a gluten free diet (with some slip ups, not all of which were accidental), I still struggle with it every day.
I'm thinking of it today, because the last few yoga classes I've had seem to have focused on twists, which has had my innards objecting somewhat. Yet, they feel like they're working out some nasty disease afterward as my whole body feels both more healed and more ill.
I wound up spending a lot of time in bed over the weekend from this, and I'm wondering how much longer I'll get these effects from the yoga class, because I'd really like to be well enough to manage two classes a week again. Or three.
One can hope.