Let Me Tell You My Story About Celiac Disease...

So, I've badly neglected this blog, and now feel the need to write about some health problems I've been dealing with. Since it still has to do with life in Taiwan, its health care system, and food (yay, food!), I figure this is as good a place as any to write about it. Plus, it's my blog, so I'm gonna do what I want. Yeah! I'll still include pictures whenever relevant though. I like pictures.

This tomb guardian in Muzha also likes pictures.

Here is my introduction to my ailments (I like to be a little melodramatic): I have Celiac disease, which is an autoimmune disease. This means that any time I eat wheat/rye/barley or other related grains, my immune system gets super confused and instead of sending out troops to fight off the "Enemy Gluten" it instead attacks... me. I have had this since I was at least 6 years old. I remember not being allowed to run in the Terry Fox run, because my knees hurt so badly it was like I had arthritis. At six. One time, my Grade 1 class was on some field trip, and when I complained to the TA that my stomach hurt, she told me to "walk it off, and think about something else." Really, who tells a 6 year-old kid with stomach pains to think about something else?  I also would frequently be doubled over with stomach pains after lunch time.

In my early and late teens, I would get urticaria (hives/ wheals) all over my body. There were a few times when my face swelled up. I still went to school, and my friends didn't even recognize me because my face was so misshapen. The pharmacist gave me white cream to help cool it and bring the swelling down, but living in a small town, our choice in doctors was slim. My doctor had retired, and his successor was a largely useless fellow who wouldn't send me off-island for an allergy test because I could be "allergic to a specific brand of detergent" and thus deemed it pointless. I don't recall him offering any solution. We tried eliminating various foods from my diet in a vain attempt to pinpoint the cause of my allergy, but with no results.

Doctors prescribed me antihistamines, which I took almost every day. When those still didn't keep away the worst of the flare-ups, I was prescribed Prednisone, a very powerful corticosteroid. When I went away to university, I saw the campus dermatologist, who diagnosed my rashes as "idiopathic urticaria." I was excited to have a diagnosis, until I looked up what it meant: a rash for unknown reason. What an ass, I thought. I could have told you that myself, and saved myself an hour of waiting in your office to find out.

Around the same time, my maternal grandmother was diagnosed by her naturopath as having this strange thing called Celiac Disease. Ten years ago, none of us had ever heard about it - no, not even on the health-conscious West Coast. That was the first time we had heard of wheat being the potential problem; before, it was the go-to comfort food. If my stomach hurt and I was too sick to really eat much, some home-baked bread, buttered toast, or soup and crackers was a safe bet. After my grandma's diagnosis, I began to observe my symptoms more closely. If I drank a lot of beer one evening, I inevitably awoke the next morning with fingers so swollen I couldn't close my hands into a fist.

I finally moved to Vancouver, and got a new doctor. My first visit with him, I asked him if he could test me for Celiac - and there began my path to health. He sent me for a blood test, which tests for antigens that react to wheat. Once that came back positive, I was then sent to a gastroenterologist for an endoscopy. The biopsy results would determine if I was merely wheat intolerant, or if I indeed was a Celiac. They used local anaesthetics during the procedure, so I was able to lie on my side and watch the little camera on the screen as it travelled down into my severely damaged small intestine. A healthy small intestine has plenty of folds, called villi, to slow down digestion and absorb nutrients. When a Celiac eats gluten, those villi become inflamed and collapse, resulting in dramatically less surface area from which to absorb nutrients. Which means we're basically wasting away and malnourished.

These dancing, dead birds were probably healthier than I was.

Anyway, when the camera passed my duodenum, instead of seeing all these super awesome healthy villi, we saw a smooth pink tube with small ridges. Kind of like little pink speed bumps, where big folds of tissue should have been. The doctor told me right there, "Yup Britt, I think you're right. Looks like you have Celiac disease. We'll still take a tissue sample to confirm it though." Then came the tiny little pinch as the little pincer things nabbed a bit of what was left of my small intestine. The nurses, who had assisted in countless endoscopies, colonoscopies, and who-knows-what-else-scopies, said they'd never seen anything like it. So finally, at 22 years old, after at least 16 years of suffering, I had a real, conclusive diagnosis. Although there is no cure for Celiac Disease (nor for any other autoimmune disease, as far as I know), at least it can be controlled through diet.

I certainly thought it was as simple as no breads/pastas/pastries, etc. Through trial and error, I slowly learned that there is gluten in almost every processed food out there. From soy sauce, to Twizzlers, to pickled beets (damn you, malt vinegar!), tempura, soba noodles, you name it. Nothing is sacred. Being gluten-free was not as easy a task as I thought it would be. Eventually, I learned how to be gluten-free, and that "cheating" was absolutely not worth it. At all. The last time I ate something from Tim Horton's, I thought I couple Tim Bits couldn't hurt - and let me tell you, the next day, it felt like I had eaten razor blades. I have never been tempted by Timmie's or by regular donuts ever again. Another ill-fated day, I quickly grabbed an orzo salad at a deli, thinking it was some type of rice. As I ate it, I thought it felt a whole lot like pasta. Turns out, orzo is a type of pasta (who knew?) and I was going to be really sick by the next day. I then ate a hot cross bun, because it was Easter, and dammit, if I was going to be sick, I may as well enjoy it. I don't think like that anymore.

Living on the West Coast, it became increasingly easy to find gluten-free foods. Entire bakeries dedicated to gluten-free products opened up, like Panne Rizo. I could eat gluten-free hot cross buns at Easter! What a treat. Restaurants began to have gluten-free menus. I could order gluten-free pizzas. It was heaven. Then the whole "gluten-free fad diet" started, and although I have mixed feelings about it (such as not being taken so seriously when I ask for GF food), it definitely increased the availability and selection of the products I could eat.

Then I moved to Taiwan, where a package of imported gluten-free pasta costs $300NT ($10 CAD) - if you can find it. The locals don't know what Celiac disease is - nor, as I've recently discovered, do many doctors. Even telling someone that I'm allergic to wheat is tricky, as people here often don't make the connection that flour (麵粉) is made from wheat (小麥). Because of this, and because for my first year here I had no real kitchen, I let my guard down and was not as vigilant against Enemy Wheat as I need to be. Taiwan and its eating-out culture is no safe place for Celiacs. With that, I'll sign off for the night. More to come soon.

This beautiful vegetarian dish? Not safe to eat.