The day after I
packed up my belongings and headed west to start a new chapter of my
life, I got a phone call from my doctor. “You have Celiac's
Disease,” she said. I was in Minneapolis after having driven all
day from my home in Madison, Wisconsin, on my way to Portland,
Oregon. It was a dreary and forgettable March day, the kind of day
that is typical of Minnesota in March. The cold and cloudy kind of
day that you would never remember, unless, that is, you got a call
from your doctor. “Celi-what?” I reacted. I had never heard of
it. I echoed her words, “Celiac's Disease,” trying to derive
meaning from the unknown syllables, and I felt the pulse behind my
ears quicken and swell with surges of anxious blood. I am only 25
years old, but I have long had a fear that I could spontaneously fall
dead as a result of a sudden heart attack. My heartbeat became a
sonorous boom, and shook my entire body - heart failure, blood clots,
brain aneurisms, I thought. I'll be dead by 26. “What is
Celiac's Disease?” I asked
her, as calmly as possible.
She explained to
me that Celiac's Disease is an auto-immune disease in which your body
can't tolerate gluten. “Gluten?” I started. “You mean, like,
bread and pasta?” I was in disbelief. “No no. You don't
understand,” I reacted defensively, “I love bread, I love pasta,
and I love beer. I've never in my life had a negative reaction to
anything like that! The test must be bad, or else they mixed up the
samples in the lab or something. Surely there's an explanation for
this!” One by one, she shot down my escape routes, my tunnels
leading away from this disease and back into the optimism that I
started this day with. “No, the blood test is extremely reliable;
no, it doesn't matter that you haven't had any symptoms; no,
no,no...” After the initial shock, and as she settled into her
explanation, her tone was conversational, as if we were talking about
a movie that we had both seen. She explained the plot, went over the
unexpected twists and recited the funny jokes while I acquiesced with
a series of “hmm's” and “aha's.” I laughed when I was
supposed to laugh and became serious when she became serious. In
reality I hardly heard what she was saying. There was a humming in
my head that was growing louder and louder.
Two weeks earlier I had decided to visit a doctor. I would be moving out of state soon, and my mom's insurance, which only covered me in Wisconsin, would expire when I turned 26 in August. I told the doctor about some heartburn and chest pain that I was concerned about. To my relief, they ran an EKG and determined that my heart was, indeed, robust and fully functional. They suggested that the chest pain was likely a symptom of heartburn, but, in order to rule out other gastrointestinal maladies, I should see a gastroenterologist and have them conduct an endoscopy to survey the esophagus. They did that, and said I was fine. As a precaution, my gastroenterologist said that she screens all of her patients with a series of blood tests, just to check for a few different diseases. I thought nothing of it at the time, and obliged her by heading down to the laboratory to draw blood after the appointment.
Fast forward two weeks, and that seemingly benign blood test had turned into a malignant tumor in my life. “You have Celiac's Disease.” The reality of it sank in my stomach like a rock dragging me to the ocean floor. At the end of our conversation, she had told me, brightly, that I needn't fear because there is a cure for this disease. “You simply can't ever eat gluten again, ever...” she said matter-of-factly. “Then your small intestine will return to its normal and healthy state.” I wanted to scream at her. “Normal? Healthy? That's what I was 10 minutes ago, before you called me!”
I hung up the
phone and tried to absorb all of the ground-shaking information that
had just been thrust onto me. The word “forever” stuck like a
knife in my consciousness. “Forever?” I repeated aloud, trying
to grasp the weight and finality of it all. “Like, never ever
again?”
I walked alone, down a busy commercial avenue, and let the biting Minnesota air assault my senses. The frigid air rushed into my nostrils and flooded my lungs. Part of me that day thought that maybe I was still asleep and this was all a bad dream. I implored my sleeping self to wake up and end this nightmare, but as I watched myself extend one foot in front of the other on that frosty afternoon, it became clear that this was no dream.
As I walked further along, I felt myself receding from the world that I knew. I was walking in my own bubble, no longer connected to the gluten-eating world that I had been a part of just 15 minutes earlier. I walked past a bakery displaying fresh loaves of french bread in the window. In the next window, a pizza shop emanated an intoxicating aroma of oregano and dough. Finally, a bar flaunted craft beer specials and a neon sign searing the word Budweiser onto my fragile retinas. Tantalizing displays, which, just minutes earlier, would have aroused my hunger and curiosity, now only stung me, as I felt the pang and nostalgia of losing some integral part of my life that I would never again have.
In the days since that fateful day, I have adapted, slowly and unsteadily. I never did wake up from that dream that day, but I learned to live inside of it and, day by day, I learn the new rules of this new life. It has been two months, and it has been a journey. Every day I enter a new phase and come into a fresh understanding of this lifestyle that I have been given. In this blog, I aim to share my experiences as a person with asymptomatic Celiac's disease who is learning to cope with this often enigmatic and invisible disease, and the lifestyle that accompanies it.
Thank you,
Ian
