I’ve lived a life of physical privilege. I realize that now. Other than a few minor illnesses and an accident in Home Economics that required stitches, I had a healthy childhood. The closest I’ve come to breaking a bone was a particularly violent toe stub. I had two normal, drug-free childbirths. Whenever an intake nurse asks me what medications I’m on and I say none, she pauses to make sure she heard me right. I get a little seasonal hay fever, but nothing I would specifically state as an allergy. I can eat anything.
Or could, anyway. As I mentioned a few months back, I was recently diagnosed with celiac disease, an autoimmune disorder that causes my body to attack itself when I consume gluten — a protein found in wheat, barley, and rye. There is no medication for it. The only way to stop its damage is to avoid gluten altogether. Not doing so compromises the body’s ability to absorb nutrients, leading to malnutrition and increasing the risk of gastrointestinal cancers. It also makes you feel awful in a variety of ways and is often associated with other autoimmune disorders.
“Well, at least you can fix it with just a diet change.” I’ve heard this pep talk dozens of times since my diagnosis, and while I appreciate the sentiment, it’s not really true. Going gluten-free isn’t a diet change. It’s an entire lifestyle change.
People eat together. It’s a thing we do for survival, but also for connection, for pleasure, for love. I’ve never been confused for a foodie, but I have always enjoyed the experience of sharing a meal with friends and family. Since my diagnosis, however, that pleasure has faded, especially when it comes to dining out.
“There are still lots of things you can eat!” Well, yes, in theory. But the reality is more complicated. Celiac disease is triggered by the smallest trace of gluten, so the risk of cross-contamination is always a factor. And thanks to the miracles of modern science, seemingly safe foods can be rendered unsafe through the use of grain-rendered flavorings or preservatives. There’s a long list of foods I should be able to eat but simply can’t because of the way they’re handled or packaged. Even natural, unprocessed foods can be easily and unnecessarily “ruined” in gluten terms by something as simple as using a contaminated pan or not changing gloves after making a sandwich.
It’s estimated that 0.8 percent of the U.S. population has celiac disease, but as many as 6 percent may have other forms of gluten sensitivity more comparable to an allergy. Add to that the people who are making a conscious choice to reduce or eliminate wheat from their diets and there’s a sizeable group of people (and potential customers) who benefit from having gluten-free choices. Still, I feel weird expecting or even wanting my particular food needs to be accommodated. I recently gathered the courage to ask a chef about a menu item’s wheat content and he rolled his eyes and said, “Oh, you’re one of those.” He was being playful, but it still stung. The phrase “gluten-free” has entered the public vocabulary, but it’s often seen as a diet fad or trendy pseudo-science following a long line of other things we’ve been told to cut from our food.
Besides, I can barely manage to accommodate all my food rules in my own home. Regular cooking annoys me enough (see above re: Home Economics). I don’t have separate gluten-free utensils, I use the same sponge to wash wheaty dishes as I do for my own, I don’t scrub my hands between packing my kids’ lunches and making my own breakfast. And that’s probably why I don’t feel significantly better. Trying to fight a non-stop battle against a dust-mote-sized foe feels, quite simply, impossible.
And that’s how I’m finally seeing my privilege. I’ve never had to think about my health before. I’ve never had to advocate for what I need to be well. I’ve never had to weigh my needs against someone else’s convenience (or my own). I now realize that this is what millions of people have experienced and live with every day, and without their willingness to speak out, we wouldn’t have food labels or allergy warnings or public bathrooms that can fit a wheelchair. A disease doesn’t define who I am, but it is part of me, and if I’m going to live my life to its fullest, I need to make that part fit.