Every good waiter asks, but I never want to explain. “Are you eating gluten-free for health, or by choice?”
Well, both, I’m thinking. I choose not to die prematurely. I choose to avoid GI cancer, please. Further autoimmune diseases (diabetes or thyroid disease are common complications.) Weeks of crippling stomach pain and neuropathy (tingling in hands and feet) and depression or general confusion.
Was that what you were asking?? No croutons, please.
I respect that there are more critical conditions. Conditions that have to be treated with radiation, or intravenous solutions, or a lifelong series of pills. But hardly anything will make you as much of a pain in the ass as Celiac disease. I’ll tell you why: the cumbersome part is not asking questions about every ingredient (ad nauseum) or method of preparation (is there a crumb on the counter? Are you sure you didn’t use the same knife on my food that you cut the bread with?) or how much the food-provider truly knows/cares.
The burden lies in the realization that it is your lifelong responsibility to know more and care more than anyone else does and probably ever will about whatever is wrong with you. Eat at your own risk. The relentless struggle involved in simply enjoying food and living and feeling (only somewhat) decent will make an anxious, avoidant outcast out of any otherwise normal-seeming person. Celiac disease demands never “letting go” for even one second. And still not feeling exactly right nearly every day.
People will perceive that absolute necessity to control your dietary needs as weakness… anal-retentiveness. Fear. They’ll treat you like the token freak on a sitcom. Accordingly, many characters on sitcoms or cartoons suffering from Celiac have been egregiously mocked or bullied about food. It’s a really odd phenomenon. They undermine the severity of your illness (“she just has a weird food allergy”) while amplifying the idiosyncrasies of your diet (“oh-my-god, can’t you eat ANYTHING?”). And some part of you does internalize that. The same neurosis that stunts you also sustains your life.
The most agonizing aspect of this disease is when you know you are taking insane measures to get well and still feel like shit. When there is no way to predict how you will feel each day, you have to pursue joy more aggressively than you avoid the poison. If it means draining five dollars that you absolutely do not have into just one cookie from a gluten free bakery—just to enjoy something again– you’ll do it. I never understood this kind of desperation pre-diagnosis. Vodka is also gluten-free. So I’ll let you finish this paragraph how you please…
My life should be on measured on a grander scale. I shouldn’t obsess over one minute crumb falling onto my plate or every dollar I flush into all this exorbitant food. I shouldn’t be telling you about a sugar cookie as if it’s a fascinating story. I should have been able to teach English overseas as I had hoped or go on a vacation without extensive planning and packing my own food.
But I have far too much pride to feel sorry for myself. In fact, it seems as though this is exactly what would happen to me, anyway. Besides, someone who is naturally neurotic and granola-y and depressive and fairly solitary seems like the perfect subject for this cosmic joke of an illness. And I’m still laughing. I laugh out of the same nasty spite that impels me to love and nourish my broken body until the day that it dies.