I have celiac disease (note, it’s not Celiac disease or celiac’s disease — it’s not named after a person named Celiac), which is both a big pain in the ass and not a big deal. While it increases my risk of all sorts of illnesses (like epilepsy and various sorts of cancers), it probably won’t kill me. And, as long as I don’t eat anything that contains gluten or has come into contact with it, I feel fine. Living in New York City and in an increasingly gluten-aware society means this not eating gluten thing is pretty easy: I know where to get gluten-free cupcakes (I’ve at least three choices here), gluten-free pizza (six choices not including frozen) and most everything else I could want. Even many of the goodies at my local Costco are labeled gluten-free.
The problem is, that right now, I’m pretty sure I’m eating something that isn’t, because I feel like crap in a very particular way. This is frustrating, not just because I feel like crap, and not just because I’ve been known to yell at other celiacs for thinking every stomach upset they experience is about gluten (maybe you shouldn’t have eaten an entire batch of brownies made with bean flour (I’ve done this; and no matter how good they taste, it’s a bad intestinal choice); or maybe you have a stomach bug; or some other as yet to be diagnosed intolerance — making me a big giant hypocrite as I attempt to figure out where the secret gluten that must be responsible for my current suffering lives), but because I did a big grocery run the other day, and everything I bought was explicitly gluten-free.
Unfortunately, this is no guarantee. There’s been lots of scandals with stuff being labeled gluten-free that wasn’t, either because of poor production practices or outright lies. I’ve had to swear off gluten-free dinosaur-shaped chicken nuggets for this reason (trivial to you, but devastating to me); and it’s made me double and triple-check packages when stuff has a better texture than I expect, but even labeling is no guarantee.
But gluten-paranoia is sure a lot more pleasant than the possibility that I have some weird unrelated sensitivity to the sun-dried tomatoes in the gluten-free turkey meatballs I bought the other day; the coloring in some gluten-free not-entirely-natural fruit snacks; or the sunflower oil the awesome chips-made-out-of-popcorn are prepared in (and to be frank, I’ve had my suspicions about sunflower oil and me for a while).
Celiac disease doesn’t suck because of the restrictions; the symptoms when you or someone else screws up; or even its ugly metaphorical griefs (I cannot break bread with you). It sucks because of the paranoia — of what other diseases it might give me, and of food, good intentions, and honest labeling. It’s completely exhausting in the way it has forced me to view the world as suspect. Sometimes it seems like everyone, and everything is made of poison; I can’t kiss my girlfriend after she eats a cupcake; I can’t just grab her shampoo in the shower because what it contains oatmeal (gluten-contact issues and issues involving oats vary from celiac to celiac, but that’s a long footnote I don’t feel like explaining right now).
Celiac disease is also completely exhausting in the way it has caused other people to view me as suspect. I am not, for example, a picky eater because I have to know what’s in my food. Nor do I, despite not being Catholic, have much tolerance for the way celiac disease designates the state of my soul as in dire need of scrutiny because of my inability to take some hypothetical-to-me communion. I am also not trying to get attention (a desire for which I, quite obviously, have other courses of action). Nor am I on a diet (as I have to keep explaining to waitstaff when I order a hamburger without the bun and they don’t bring me the fries either!). Nor do I have an eating disorder (thanks, medical professionals who have interpreted symptoms of my disease as such). Nor I am I rejecting your hospitality. Nor am I making crap up to make your day hard.
Believe me, if I wanted to make your day hard, I have many more exciting ways of doing it than not eating bread — which, by the way, I still dream about in detailed nightmares that involve my either being forced to poison myself or my forgetting that I am.
Celiac disease is a big hassle and serious business. With attention to detail and respect from others, it’s also easy to manage. I don’t consider it a disability, except on the days that I have to, because something’s gone wrong and I can’t do what seems like normal life stuff to most other people (get out of bed, not be in pain, think straight, not have weird phantom tingling on my skin, or cope with typical external stimuli like street noise, bright lights, etc.).
There’s nothing I did to make this happen to me. And there’s nothing about it that makes me lucky other than it’s thankfully not something with more serious consequences or something that’s even harder to manage than it already is.
I have no problem with people consuming gluten around me (although keep your crumbs out of my butter or I get fiesty in the bad way), and your apologies are not necessary. All I ask is that you have tolerance when I sometimes, like now, lose my patience with this thing and have to complain or can’t keep my eyes focused on you in a conversation or forget words or can’t leave the house or can’t make myself look attractive because my nutritional uptake is abnormal again. Some days I have no right to the spoon metaphor; sometimes “spoon metaphor” is all I can say to explain to you how bad it is.
Celiac disease is the explanation for decades of emotional and physical misery I experienced without more concern than “she’s just like that.” I’m still just like that. There’s nothing I can do about it, and there’s nothing you can do about it. But if I can have a sense of humor, or at least ambivalence, about my condition eight days out of ten, all I can ask is you do the same.
Patty, who is awesome about this (it’s hard to move in with someone with celiac disease when you are as made of pasta as she is), often has to remind me to eat, because I’m one of those people who gets distracted and hyperfocused and forgets to eat when I’m deep in project mode. But sometimes the simple truth is I just don’t want to deal with dinner being a detective novel.
What can you do to be nice to celiacs or at least me? Know what’s in the food you serve. Ask if a menu or type of cuisine is okay before choosing a restaurant. Never assume our food choices are about our weight or that our weight is about any sort of choice at all (celiacs come in all sizes; but most of us, regardless of size, are at a weight impacted by our experience of the disease); don’t get annoyed when we can’t have something you want to give us — we’re always more annoyed than you! And for heaven’s sake, if you don’t want to hear about bodily functions and internal bleeding, don’t ask us about the primary symptoms.
Celiac disease is kind of a weird experience in that there is no cure. For people like me, getting healthy means just finding out that you’re sick. Just because that’s a blessing most days, doesn’t mean we always know how to be happy about it.