On May 4, 2009, I settled down on my couch and flipped on The View, a guilty pleasure I usually watch just for fun. But that morning was different. Elisabeth Hasselbeck was discussing the release of her book The G-Free Diet. I was captivated by her story and mysterious condition: celiac disease. I listened in awe as she listed her symptoms—each was something I had struggled with for as long as I could remember. When the segment ended, I sat, slightly dumbfounded, and wondered if this was the answer no doctor or specialist had been able to give me.
I wasn’t the only one. Within minutes, my phone rang. My father, who rarely ever watches daytime television, happened to catch the same segment and called me right away. He, too, thought celiac disease was worth exploring and urged me to get tested. I got another call two hours later, this time from my mom. She wanted to let me know she had, coincidentally, just heard about something called celiac disease from a friend. “Honey,” she said, “I really think this could be it!”
That was the day everything started falling into place. I spent the next week poring over blogs, websites, and medical journals. I was a mess of mixed feelings, wrestling with the emotional pain of never eating gluten again but excited by the prospect of being physically pain-free. Two weeks later, I made an appointment with my doctor to get the determining blood test. He told me I neither needed the test nor could possibly have the “rare childhood disease,” but after hounding his office for another two weeks, I finally got the news that I did, in fact, test positive for celiac disease. It only took me 23 years to figure it out!
Before getting my diagnosis, I was certain I must be dying.
My family and close friends were starting to believe I was a hypochondriac and that my problems were mental. And how could I blame them when every doctor in town was telling me that I was “completely healthy”? Every test I took—MRIs, sigmoidoscopies, CT scans, barium tests, so much blood work I thought I’d been drained dry, disgusting “at home” tests I won’t describe in further detail—came back with inconclusive results. The only diagnosis my doctors could come up with was IBS, but I wasn’t convinced and kept searching for answers. Getting the right diagnosis gave me a sense of freedom—I was so relieved to know I wasn’t going to keel over.
My symptoms had been interfering with every aspect of my life. To say I was fatigued would be an understatement. I could sleep for 12 hours a night then nap for 2 or 3 hours during the day and still be exhausted. I never had a sharp focus, my thoughts were always cloudy, and my short-term memory was shot. I can’t tell you how many phone conversations I had when, by the time the person I called picked up the receiver, I had forgotten why (and sometimes even who!) I’d been calling in the first place (leading doctors to think that my problem might even be neurological). I had terrible joint pain, especially in my lower back and legs, but doctors told me it was just muscle soreness from being an athlete and a dancer. I had headaches every day that always set in around 1 p.m. (right after I’d eaten my usual turkey-on-wheat sandwich) and not subside until the following morning. I was moody. My emotions were constantly yo-yoing. And the icing on the cake was my apparent lack of immune system. Someone could sneeze in the back of my lecture hall or on the other end of the subway car and 24 hours later I’d be running a fever, have a sore throat, and be even more fatigued than usual.
And that doesn’t even cover what was going on with my stomach! I was constantly bloated—I could lose or gain five pounds in a matter of hours, and I had so much pain on my left side I was unable to sleep with even the slightest pressure on it. After certain meals, I’d have to spend a good amount of time in the bathroom. I had to know where the closest one was at all times. I could probably still tell you the location of every “private” restroom on the Vanderbilt campus! I would decline social invitations just so I didn’t have to “do the dance” and pretend I felt good enough to be there, or so I wouldn’t be perceived as the “whiny girl” who was always sick.
I often found myself wanting to withdraw, but was dead set on hiding this “thing” that was running my life.
When my relief upon being diagnosed had subsided, I felt like even though I wasn’t dying, I’d just been handed a death sentence. It seemed everything I’d ever loved to eat was suddenly ripped away from me. I wished I could have had Chick-fil-A just one more time. And what about my lifetime goal to try every kind of pizza in New York?! To put it simply: I got exceptionally depressed. I didn’t know anyone with this disease. I didn’t know anything about it. All I did know (or thought I knew) was that gluten was in everything.
But things have certainly changed since then! Do I sometimes find myself wistfully lingering outside of Dunkin’ Doughnuts on my way to the subway? Of course—I am still human. But my outlook has changed, and it has changed for the better. My quality of life has improved tenfold in terms of my health (no more pain, headaches, brain fog, lack of balance, fatigue, etc.), my exposure to new foods (do you know what quinoa is? What about amaranth? You will now!), and my newfound passion for life. When you’ve felt like you’ve been dying for so long and then you learn, indisputably, that you’re not, the world holds so much for you to experience. I’ve discovered the joys of gluten-free bakeries, amazing girls’ nights in New York City, and the deep love I have for my supportive family, just to name a few!”
So here I am today, your gluten-free guru. While I know this adventure will have many exciting twists and gluten-free turns, I also know firsthand how difficult having celiac disease can be. While I initially wanted to place blame on my former doctor for not wanting to give me a simple test, I’ve come to realize that both he and I were victims of ignorance more than anything else. I’m here to increase awareness, diagnosis, and effective treatment! I want to be honest and not only share my triumphs, but also my hardships. For the first time in life, food doesn’t rule me—I rule the food! And from now until forever, it’s moving from ‘have-not’ to ‘have’ in gluten-free dining (and, for that matter, in life)! And I want to share my experiences and help others through Cēliebo.