The Diagnosis

Whole wheat, penne pasta slathered in pumpkin sauce stared up at me, waiting for the fork suspended above my bowl to finally descend. I wasn’t sure how long it had been since I’d dished it up—was it already cold? I sat alone in front of my dinner with mixed emotions. Two hours earlier, I’d received a phone call from a doctor at the University of Chicago Celiac Disease Center. My blood test—courtesy of the free blood screening they have every October—came back positive, and not just positive, but off the charts.

I had been standing at the base of the John Hancock building in Chicago, about to step into Aveda. It was 6:00 p.m. on November 15, 2012. The sky was already dark, and commuters were funneling through the streets. I sank onto one of the cement stairs in total shock. I listened as the doctor told me to continue eating gluten for now, because the next step would be to schedule a biopsy to confirm the diagnosis. If I stopped eating gluten before the test, the results would be inconclusive. They would be looking for damage. I could not believe what I was hearing; when I went to the screening, I considered it research—my interest was as a writer whose father suffered from celiac. I never dreamed I would be diagnosed, too. Later, when I said this to my sisters this, she replied, “Denial. It’s not just a river in Egypt.”

True, I had been feeling sick for a few years, but I hadn’t connected my symptoms to one underlying condition. I had felt unusually susceptible to stress. I had headaches, stomachaches, extreme fatigue, irritability, impatience, depression, anxiety, and had undergone two carpal tunnel release surgeries. But the truth was that during those years, I blamed myself. Surely, I was becoming one of those people, a hypochondriac, a pessimist, someone who focused on the negative. I hated it, but didn’t feel empowered enough, strong enough, to change it. as all because of what I was eating? The realization that I hadn’t simply morphed into an unbearable person was overwhelming. But the amount of control this had over my personality was heartbreaking.

After growing up watching and experiencing my father’s illness from a child’s perspective, I knew that just trying to not eat gluten would not be a silver bullet. I would always be sensitive; I would always be vulnerable to hidden ingredients. I would always struggle to manage stress. Even though my family knew this disease inside and out, even though I wouldn’t be alone, I felt powerless over my body. I felt weak. 

While we were still on the phone, the doctor scheduled my biopsy for December 6, 2012; I’d need to keep eating gluten for a month. When I got the call that night, my husband was out of town; my sister who lived nearby was as a work function. I couldn't bear to call my parents; I didn't want to hurt them. I went to the grocery near our apartment and stared at the refrigerated case that held the gluten-free foods. As scared as I felt, I realized that when my father was diagnosed, this didn’t exist. There were no gluten-free foods in the grocery—they had to order tapioca and rice bread from Seattle. And that was it. No matter how this felt to me, I would have it easier than he did, than my mother did, back then. Now, most people have at least heard of gluten. I went home, fixed dinner, and stared at the bowl of pasta: Is this the problem? Will this hurt me? I won’t have many more chances to even eat this. I don't even know that I want to. I knew that once I went gluten free, I would never purposefully cheat. I knew the consequences. I knew who I’d become. And it would never, ever, be worth it.

 

Photo courtesy of https://www.flickr.com/photos/kristyr/