My name is Kristen, and I am (almost) 100 percent gluten-free. From the beginning, this lifestyle has been both complicated and interesting. Personally, I've found that the biggest hurdles are not when I'm standing at Whole Foods with an overpriced bag of rice bread in one hand and a chart in the other, trying to determine if every ingredient in a soup is "safe." It's explaining my GF (and fabulous!) lifestyle to people. Their reactions vary so much, but mainly they're as confused as I was when I started down this path. They wonder what the hell gluten is, and if it will kill me. In my case, the answer is no, it probably won't kill me. But it sure does make life uncomfortable!
The last time I knowingly ate anything containing gluten was August 2012. I was at one of my favorite Greek restaurants and ordered everything with pita on the menu. As I waited to hear back about a recent endoscopy, I had been told not to go on a gluten-free diet "just yet." So I ate normally, not really believing I had any dietary issues (well, aside from a lifelong battle with mushrooms and embarrassing gas...) In retrospect, of course, I wish I had gone on an epic, gluttonous binge; waking up pre-dawn in a Brooklyn bread factory wondering what happened the night before, with crumbs all over my face and a wallet full of real dough. Alas, I just have memories of those final lamb pitas, gooey and warm, to remember.
They were fine enough, but I still like to fantasize about what I would have eaten had I known that the following morning my doctor would tell me that I have Celiac Disease and had to stop eating gluten immediately. Perhaps I would've indulged in some fish n' chips, washed down by several beers. Oh, or some fat french toast. Or pancakes. Or both! All smothered in syrup. Even if I had the foresight to indulge in something bursting with insane amounts of gluten, the harsh reality would not have changed: I was thrust -- overnight and rather harshly -- into a major lifestyle change.
At first I thought, no big deal! Sure, I didn't know anyone with this condition, but whatever, I'd just avoid bread... right? Before my diagnosis, my only experience with the disease was in college. A friend was tested and I mostly remember her great relief when she found out her digestive issues were not caused by the dreaded Celiac. So when my doctor called that fateful August morning, I figured it'd be the same thing: I'd just need to stop drinking kombucha or something, and then I'd be sorted. Instead, he rapidly fired results and levels and "highly elevated" at me and the next thing I know: Boom. Gluten is off my menu -- effective immediately. Sitting on my tiny toilet, in my tiny bathroom, I teared up trying to process the news. At that moment, the biggest question on my mind wasn't "what can't I eat," but rather "what the hell is Celiac Disease"?
The nurse at my doctor's office gave me one of the best descriptions of what was happening with my insides. She mimed a kind of gastro-puppet show with her hands explaining what happens in your body when gluten is introduced. Basically, she showed me that the villi, these fingerlike projections that line the small intestine, normally wave about, joyfully picking up nutrients as food passes through. But when people with Celiac Disease are exposed to gluten, these little guys throw their arms down in protest and don't absorb any nutrients. Watching her wave her fingers about like a creepy, cheek-pinching Aunt clarified what was happening, but I still didn't know how I was going to stop it.
My doctor referred me to a nutritionist and said I could find plenty of resources online, so now a plan began to materialize. At first it seemed like a simple change, but it proved much more difficult that I could've imagined. Instead of a nutritionist, I could've used a whole new life coach to guide me through not only the food aspect of this diet, but also the social and economic implications of living completely gluten-free.
Gluten allergy reactions vary greatly from person to person. I've heard of people with sensitivities suffering from acne or migraines that improve almost immediately after cutting gluten out of their diet. In my case, I had been losing my hair for years and would develop bald spots from time to time. In addition to hair loss, let's just say I had a "complicated" relationship with the toilet. I happen to be in the minority of people with this allergy who get clogged up rather than free flowing, if you're picking up what I'm putting down. Anyway, the point is everyone has different experiences with gluten sensitivity, which makes it that much harder to relate. It can be a very isolating condition, especially for people out there without the resources and support I'm fortunate enough to have.
Even though my unprofessional understanding is that gluten allergies will not necessarily kill you, it does become something that defines you. A little over a year after my own diagnosis, I'm trying to figure out exactly what I want that definition to be.
If you have experiences with Celiac Disease or live a gluten-free lifestyle, please share with us in the comments. I love hearing from other people who simply will not tolerate gluten!
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