Getting to Know Me: Celiac Disease

Let the Games Begin

Its funny to me that its called Celiac "disease", because it sounds so serious. I guess its a 'disease' but I never really think of it that way. My adventure with Celiac Disease began in January of 2006. My brother had been diagnosed with Celiac several years before me, so when I was sick, they knew right where to go. I was lucky that way; it took them quite a while to figure out what was going on with him. I was in the midst of deciding if Chris was "the one" and had been feeling pretty sure he was. I got my blood tested over Christmas break, and in January my mom called and asked "How is Chris? Is everything going smoothly with that?" When I said yes, she said "Good, because your life is going to get more complicated." My test was positive for Celiac. This result wasn't as earth-shattering as I expected it to be. It was a relief, really, because I had an answer to the upset stomach, the bathroom visits, the semester of college I had slept through. And a way to solve it: the gluten-free diet.

And because you were wondering: my wedding cake was made from Rice Crispy Treats

Getting All Technical
I'm not a medical expert (I know, you thought I was with my B.S. in Sociology, but I'm not), so here's a Erin-version of Celiac disease: the villi in one's intestines are supposed to suck nutrients out of food, leaving just waste to exit in peace. My villi, however, are destroyed by "gluten" rather than recognizing it for the nutrient it is, leaving them incapable of doing their nutrient-sucking duties. This creates several problems, including malnutrition, exhaustion, infertility, upset stomach and extra bathroom time, higher cancer rates, stunted growth, etc. Fortunately, I really only dealt with an upset stomach and falling asleep everywhere I went, including driving down I-15. When you stop eating gluten, your villi heal up all nice and new and start functioning perfectly. So while there is no "cure" for Celiac Disease, it is "easily" manageable. (I like to say easily because its all about diet--no chemo, medications, etc--I'm lucky).

Wheat-Free, Worry-Free

A gluten-free diet, however, is not as glamorous as it sounds (because I know it sounds really glamorous). No breads, pasta, oats, cookies, brownies, pastries. Does it have flour in it? If it is bready, soft, and delicious, than it probably does--and I can't eat it. Missing out on most things doesn't really phase me these days--I'm accustomed to smelling the goods rather than eating them. Somewhat acceptable gluten-free replacements can be found. Once in a while something will come up that will torture me. My current torturer? Those Dominoes pasta in a breadbowl things. Those commercials strike pain in my heart, because it looks like the most brilliant invention ever. The only significant problem is convenience. Quick, easy food that doesn't require any sort of preparation and is somewhat filling is almost non-existent. This means the lunches I bring to work are quite a production--and traveling is a pain in the rear. Its hard to bring things, and you never know if airport food is safe to eat. Therefore, I have what is called my "airport prayer", which involves my saying I don't know if this food is perfectly safe, but I really really tried to find something smart to eat, so please please bless I won't get sick from eating this. For the record, I have never been sick from Celiac Disease in an airport after all the meals I've had while traveling (pregnancy, on the other hand, did quite the number on me . . . ).

Social Commentary

I remember shortly after I was diagnosed, I attended a seminar held by BYU's dietetics program. On the top of my note paper I wrote in large letters "I AM A CELIAC". The speaker's opening point? "Don't identify yourself by your disease. You are not a Celiac. You have Celiac". Whoops. Intense. I promptly crossed out "am a" and replaced it with "have". For me, Celiac Disease just folded itself into my life, rarely a huge inconvenience. It was better to feel good than to feel bad, and it was as easy as that. One comment I get a lot is "that must be hard; I could never do that." Oh, I bet you could if it meant not being sick all day every day. And yeah its, hard, but so is college, and people always go to college (ok, maybe that's a bad example). One thing that annoys me is the stronger version of that comment. One person said to me "Wow! Your life must suck!" You know what? My life does suck. Happy marriage, college education, wonderful family, pretty baby girl . . . but I can't eat that brownie so my life totally sucks. No people, my life is much better gluten-free. Trust me.

Mixing the Rules

One of my favorite things that has happened concerning my Celiac-ness is when I started my job here at UT. People quickly picked up on 3 things: 1-I was Mormon, 2-I was allergic to wheat, and 3-I was trying to eat healthier (which is just crazy talk to Southerners). When I turned down coffee, I was asked "Is that your religion, or does it have wheat in it?" No chocolate cake: "Oh, right, Mormons can't eat chocolate." What? No, its the wheat. It was something my co-workers had a hard time getting straight, and was totally hilarious to me.

In Conclusion

Ok, I don't really have a conclusion. Its just part of my life; a part so well-blended into my everyday that I don't even really think about it anymore. Its kind of like the Word of Wisdom: no beer, no coffee, no cookie. Its "forbidden" to me, but it really only makes me happier, because even though I get teary-eyed when I see a Dominoes pasta breadbowl commercial, I know what the breadbowl would do to me (and these days--and more importantly--what it would do to Lil'). Its just not worth it, so we'll stay GF (I say 'we' because Lil' is gluten free as long as she is in me. Only time will tell if she has Celiac Disease). So I'll end with a funny story. The very first time I met Chris's extended family in Chicago, they were asking me about Celiac Disease. I said, "I've been off wheat for 7 months now." Chris's then 13-year-old cousin's eyes went wide and she looked shocked. I asked her what was wrong and she said "Did you just say you've been off weed for 7 months now?"

Pretty much, yeah.