Celiac: The Illness I Wish I Could Keep Secret
It's difficult to live with, but not for the reasons you might think
About 12 years ago, I sat across a table from the head cook at a New England writers’ conference where I would be teaching for two weeks.
Freckled and blonde, the cook wore a checkered kerchief around her neck.
“I have celiac,” I explained. “I can’t eat gluten. And, gluten can’t touch my food.”
She said nothing.
“If there’s cross contamination, if gluten from someone’s food or silverware touches mine, it’s as dangerous to me as if I’ve eaten an entire loaf of bread …”
Still, she didn’t respond.
“I’m sorry if this causes you extra work,” I said, even though I knew being ill was nothing to apologize for.
“Fine.” She rose, frowning and seeming annoyed.
Not a Fad
A brief explanation: Celiac is an inherited autoimmune illness. It has no cure. When undetected, it can lead to malnutrition, severe osteoporosis, and cancer, among other things. When those of us with celiac eat gluten, a naturally occurring protein in wheat and other grains, our body mounts an immune response that causes damage to the small intestine, leading to the inability to absorb nutrients.
Now, back to my story: Lunchtime rolled around that first day at the writers’ conference. The unsmiling cook led me to a table in the center of the dining room with a large sign that read: “SPECIAL MEALS.”
I joined a man who was already seated. In his late sixties, he had a severe hunchback. “I wasn’t diagnosed with celiac until two years ago,” he told me, sighing. “And now I have such bad osteoporosis …”
Celiac Is Often Misdiagnosed
I wasn’t surprised he’d been diagnosed so late. Too often, doctors don’t think to test for celiac (via blood screening and/or endoscopy), even though approximately one in 133 people have it. Frequently, it’s misdiagnosed as something else, such as irritable bowel syndrome.
Among the classic symptoms of celiac, all of which I had, are weak bones; no night vision; on-and-off anemia and calcium deficiency; fatigue; skin rashes and such crippling G.I. problems that I sometimes couldn’t leave my apartment, needing to be close to a bathroom.
Before I could reply to the man at my table, a crowd formed around us.
A young man spoke loudly. “What makes you two so ‘special?’ Why are you getting better food than the rest of us?” he asked.
He was truly outraged, as if we would be served filet mignon and caviar while he’d get a burger and pickle.
Some people gazed at us with concern. “What’s wrong with you two?”
Embarrassed, my tablemate and I nevertheless politely answered questions. Inwardly, I was furious at the cook for saddling us with the unnecessary sign — and at the nosiness of everyone else.
Ever since I was diagnosed 16 years ago, wherever I go — in restaurants, at friends’ homes, at parties and conferences, in airplanes and on cruises — as long as food is involved, I’m forced to divulge the fact that I have a major illness.
A friend of mine who had breast cancer surprised me one day. “I don’t envy you,” she said. “I can choose who to tell that I was sick. You don’t have that option.”
I confess that I’ve grown weary of being on the receiving end of pity (“I’m so sorry!”), nosiness (“Do you get diarrhea a lot?”), and, perhaps my least favorite — mockery (“Oh, you’re one of those trendy types who think gluten is the devil!”).
Recently, I was out to dinner with some teaching colleagues. The waiter went around the table taking orders. I told him that I have celiac and am gluten-free. A few times at restaurants when I’d said I was gluten-free but didn’t mention my celiac, I wasn’t taken seriously and gluten found its way into my dish, presumably because I was perceived as a mere “fad-follower.”
When the waiter was gone, my tablemates bombarded me: “What happens to you if you cheat?” “What’s the difference between celiac, colitis, and Crohn’s?” “You poor thing. I’d kill myself if I had to eat pizza, pasta, and bagels without gluten!”
A Difficult Fight
To avoid such situations, I’ve called ahead to restaurants and asked that my meal await me. But too often, when I’m not there to “supervise,” the chefs forget and add croutons, gravy and other gluten-filled goodies.
Via celiac groups online, I’ve encountered people who are so humiliated by constantly having to assert their needs publicly and forcefully — sometimes having to send food back to the kitchen multiple times (which I’ve done) — that they no longer dine out or travel.
Once, I was invited to a lavish buffet dinner party. I was to be the guest of honor because I’d helped the host (a photographer) land a magazine assignment through an editor friend. A week before the party, I’d requested that a simple plate be prepared for me in advance. Instead, the host planted himself in front of a table laid out with a mind-boggling number of “special” dishes for me — most of which I couldn’t eat because I’m just one person with a normal-sized appetite.
He warned people away: “Don’t touch! This is Janice’s food!”
Center of Attention
Naturally, every person at the party came over to me to find out what I “had.” I didn’t want to be rude, yet I grew increasingly frustrated explaining myself over and over. I definitely didn’t feel like the “guest of honor.”
Still, the truth is that despite such moments, and despite wishing I could return to the days when my body’s business was private, I’ve come to accept the public nature of my illness.
And I can report that the gluten-free life I lead is — without question — the best life for me. Among other things, I’m no longer constantly fatigued and my G.I. problems have calmed down considerably, allowing me freedom.
Perhaps best of all: I adore gluten-free pizza, pasta and bagels.