When I attended the keynote presentation at the Central Pennsylvania Gluten Free Expo on November 10, 2013, one thing Alice Bast, president and CEO of the National Foundation for Celiac Awareness (NFCA), said struck me more than anything else. It sticks with me to this day. It wasn’t the shocking disparity in numbers of people who have celiac disease versus numbers of those who have been diagnosed (according to the NFCA website, an estimated 83 percent remain undiagnosed)—I’ve known about this travesty for some time. Twelve years ago, I read that the estimated rate of undiagnosed celiac disease was 97 percent, so I take comfort in seeing the gap begin to close.

What struck me was the level of people’s satisfaction with their lifestyles after being diagnosed with celiac disease and undergoing treatment. Here’s the thing: celiac disease, barring other complications, is treatable. Furthermore, it is treatable with food, not “pharma”.

You would think people with celiac disease would be nothing short of ecstatic at the fact that they can heal their bodies and remain healthy with only a change, albeit a significant change, in their diets. But this, Bast said, does not turn out to be the case. According to Bast, people with celiac disease have significantly low rates of satisfaction with their lifestyles after treatment—lower, even, than that of people with much less treatable diseases. How could this be?

When I was in my twenties, I traveled, and I ate. I trekked across the country for a month with my girlfriends, relying on diner food and the occasional roadside stand for sustenance; I studied abroad for four months and toured the Australian Outback for over half of one of those months, sampling every morsel of unfamiliar cuisine that aroused the curiosity of my American taste buds; I zipped to Maine to crash for two weeks with a friend—we slurped lobster Bisque in Bar Harbor and packed thick sandwiches for our hikes through Acadia National Park; I sauntered to Cape May for long weekends when I had spare change (which was, nostalgically speaking, all it took in those days), where I munched on Louie’s pizza and Louisa’s seafood; I tented for a month at a state park in Utah, turning again to diner food and the occasional campfire dinner. All the while I enjoyed whatever brands of beer happened to be the local favorites in the many places I visited. This, I knew and appreciated, was freedom.

In February of 2002, after moving back from a two-year stint in Utah, I was diagnosed with celiac disease. All at once, my travel and culinary adventures came to an end. You see, I had been ill for a very long time. And by the time I found the treatment that would save my life, I had forgotten what it felt like to be healthy. It’s possible I had never known. So I became militant, almost obsessive, about my gluten-free diet. Because in order to stay healthy, a person with celiac disease cannot risk the slightest contamination—not a crumb from a cutting board, not a molecule from a shared pan or utensil, not a trace of gluten can enter the system of a person with celiac disease without risk of intestinal damage and illness. And this, I think, is the key to Alice Bast’s discovery with regard to lifestyle satisfaction.

It’s only lately that I’ve been feeling sorry for myself. All these years, I’ve told myself I was lucky. And in fact, that’s exactly what I believe myself to be. How lucky, I’d say to myself many times over thirteen years, if you have to have a disease, to be diagnosed with one that is so treatable. But now I indulge myself (thanks to Alice Bast and her blasted keynote) to ask not what I think, but how I feel. At the cellular level, I relate to the celiac patients Bast described in her keynote. Why is it, I now wonder, if I am so lucky, that I also feel deprived—“unsatisfied,” as Bast (if I recall correctly) put it?

The answer, of course, is simple. I want to travel. I want to taste. I want to share food at a table with my friends. These liberties that I once equated with freedom have become the cast-iron bars of my gluten-free cage.

There is still too much risk of cross contamination at restaurants to feel completely safe. And well-meaning friends who have little to no experience with gluten-free food preparation cannot possibly think of all there is to consider when preparing gluten-free food in a typically gluten-filled kitchen. The risk of eating in someone else’s home is almost higher than that of eating at a restaurant. It is too much to ask. It is too much to risk.

So I will continue to decline the potlucks and the lunches and the holiday dinner invitations because it is equally uncomfortable to sit among friends who are sharing in the enjoyment of food without being able to fully join in. It is uncomfortable for them, too, regardless of how fervently those friends deny it; you know. There is no fitting in where food is a large part of the event. Consider how often that is the case. Consider, on the other hand, a situation where it is not.

I will, perhaps forevermore, forego spontaneous travel. Rather, I will plan each trip with meticulous care. I will search in advance for potential places to eat, and I will pack my gluten-free nutrition bars in case those places fall through (which still happens surprisingly frequently). It is easier than it was thirteen years ago. That is true. But it is far from perfect, and I am not, where food and travel and by extension social engagements are concerned, anywhere close to being free.

Yes, I am incredibly lucky.

Also, I am unsatisfied.

Tags: , ,

Leave a Reply