Lots of people really suffer from celiac disease, and they don’t get the recognition they deserve. But sympathy is even harder to come by when you have a disease that doesn’t make you sick. No one understands why I even know I have celiac, let alone why I can’t go out to eat anymore. So I get all kinds of annoying questions like the above—salt in the wounds of my beer-deprived soul.
I’m a soon-to-be success story, I want to tell them. The poster child for early screening! If you found a small tumor, you wouldn’t wait to treat it until it was causing you to have symptoms, would you? Same idea!
But still, they say (or, at least, their bemused expressions seem to), you’re not really sick. Surely, a crumb or two couldn’t hurt you. Maybe you won’t have to worry about cross-contamination like your poor sister.
For most celiacs, the suggestion that “a crumb or two couldn’t hurt you” is cringe-worthy at best (and smack-someone-with-a-cast-iron-skillet-worthy at worst). And in this regard I’m your typical celiac. I mean, 20 ppm is not a lot! And what’s more, I have no idea what’s going on in my body, or why, so I really wish everyone would stop acting like I have all the answers. Maybe a crumb or two would hurt me a lot, and I wouldn’t even know it.
But that’s the thing. I have no idea what’s going on in my body. So I wonder, too. After all, it’s conceivable that I’m less sensitive to gluten than some, and that’s why my symptoms are “subclinical.” On the other hand, it’s just as plausible that my immune system is as responsive to 20+ ppm of gluten as the next celiac’s, but it just hasn’t been attacking me for long enough to have destroyed my villi. I like to think that my villi are particularly resilient, holding off those barbarous T cells with some home-front war effort, like a Victory Garden.
When you start imagining your intestinal lining growing cucumbers, you know you’ve progressed from confusion to delirium. To remedy this, I turned to Google, but even He doesn’t fully understand. Classifications abound: latent, silent, oligosymptomatic, atypical, classical, refractory types I and II. But as far as I can tell, doctors pretty much leave it up to patients in my situation to decide whether and to what extent to go gluten-free.
Turns out, nobody knows anything. Are we surprised, dear readers?
And now it’s your turn. Were any of you diagnosed with latent or silent celiac, or do you know someone who was? Does anyone know if latent/silent celiacs can get away with a crumb, or am I in denial?
What would you do in my situation? And can anyone tell me what’s going on in my body and why?!
Maybe I won’t have to worry about cross-contamination like my poor sister. And that would be, for lack of a better word, awesome (sorry, Molly). Hell, maybe I can have a whole sandwich now and then. (Okay, okay…but an itty-bitty garlic knot? Please?!)
[Editor’s note: No.]
For now, I am 100% gluten-free. I even started a new tube of toothpaste. I’m hoping to start seeing some health improvements, maybe some unexpected ones. I’m really hoping that my insomnia, anxiety, and ditziness—I mean, brain fog—are symptoms, not personality traits.
But I didn’t go GF right away. In fact, I created what I call a gluten bucket list. Come back next week and read about my quest to find—and eat—delicious things my lips will never touch again.