• Wed, Mar 3 2010

Memoir: I Have Celiac Disease

It was my last free summer of my college career, and I was determined to live life in the fast lane, but the only thing moving fast was my bowels. I was turning down invitations to go out to eat with my friends because after one bite I found myself in the bathroom. I wasn’t going out at night because I was exhausted by dinnertime. I would run and run and never seemed to be in shape. I was using the restroom up to 10 to 12 times a day, and I couldn’t seem to get enough food; when I ate, I became bloated and gassy, experiencing terrible stomach pains. On top of that I was not my usual self. I was irritable, depressed and anxious about everything. I seemed stressed and drained. I thought it could be attributed to working, living at home and trying to make a long-distance relationship work. It was not until I started to notice the toilet bowl was full of blood when I was through and I started to lose my hair that I really was ready to admit something was wrong.

After much prompting from family and friends, I bucked up and made an appointment with a doctor that my sister assured me was wonderful. There was a litany of embarrassing questions — not to mention exams I wouldn’t wish on anyone — and finally I was referred to a gastrointestinal specialist, who told me the only sure way to really figure out what could be going on with my inside was to check them out. Great. So, I scheduled my colonoscopy and upper endoscopy (which involves passing a long black tube with a video camera attached through the mouth to examine the throat, stomach and small intestine). After the test came the results: I had Celiac Disease. Well, ok, so what the heck does that mean?

Celiac is an autoimmune disease that causes my body to attack itself when I ingest any form of gluten — for those of you who are unaware of what contains gluten, it’s basically the bottom level of the food pyramid: wheat, barley, oats and rye. Celiac causes those finger things in your small intestine to dull down, so someone with Celiac can’t absorb any nutrients.

The fact that  I could no longer have my collegiate diet of pizza, ramen noodles, spaghettiO’s, mac-n-cheese and beer left me absolutely devastated. On the upside, the doc assured me Celiacs can consume hard alcohol. (Well, there goes being a cheap date. And if anyone has ever tried to play beer pong with Captain and Coke … goodnight.)

Adjusting to Celiac Disease has not been easy. Gluten-free food is not cheap, and does not always seem edible. I could not fathom paying $7 for a bag of pretzels when I could get a generic bag twice the size for$1.99, especially when the cheaper pretzels were tastier. It just wasn’t fair. I bitterly watched my roommates enjoy chicken nuggets and mozzarella sticks while I ate pasta made out of rice. The worst part? I had to get my own toaster to avoid cross-contamination. I needed my own jar of peanut butter because I could get sick if someone left any lingering bread crumbs. I was constantly cleaning the counters and re-cleaning pots and pans, because if someone used it before me with gluten-full food, I was going to get sick.

But after many months of hating my new g-free lifestyle, I came to realize it was the best diagnosis I could have had. It allowed me the opportunity to be in control of my own health. I didn’t need to take medication every day and constantly pay for refills — I simply needed to eat differently, cleaner, healthier. I had the choice to stay strict or cheat, and there are days when I want to, and days that I do. And those days, I pay for it and remember why I’m following the diet that I am.

My friends and family follow my lifestyle as well. Before we go out to eat, we make sure there is something on the menu I can eat. Thanksgiving dinner involves a specially ordered turkey because those injected with hormones are contaminated. My boyfriend carries a toothbrush with him wherever he goes, because if he has something g-full, he can’t kiss me. He asks permission before having a beer or eating pizza.

Recently, Celiac Disease and the gluten-free diet has become much more prevalent. Not only has Celiac become more frequently diagnosed but the strict gluten-free diet has caught on with non-Celiacs. As such, I have written restaurants to request they consider adding g-free menu options, and received positive responses to the suggestion.

I am willing  to speak up and share my experience — and I am starting to feel better. I am starting to be myself again.

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