Yeah, I have celiacs, and let me just state on the record that I am fully aware that it sucks. It is deeply, deeply, annoying. Thanks, I got that. It has also made my life IMMEASURABLY BETTER, such that I feel like I have a WHOLE NEW LIFE now that I am not eating the dreaded grain protein. And, ya know, I try to concentrate on that last bit. EVERY ONE ELSE IN THE WORLD, however, is fixated on how terrible celiacs is, and it makes me want to punch the whole world in the fucking face until it cuts that shit out.
I went to the park yesterday by the river to lay in the sun and read a gazillion pages of case materials for my clinic (I don't know if I mentioned here I am working on a trafficking case? I am. It is going to be an AMAZING experience). As I was walking home, I thought for a treat I'd stop in one of the newer cupcake places here in Old Town that I know makes gluten-free cupcakes (also for the record, Lavender Moon Cupcakery makes the best gluten-free cupcake I have ever, ever had. It's heaven, with frosting). While I was standing in line, the woman in front of me pointed to the gluten-free cupcakes and said to her friend, "Oh, UGH. Those must be awful." And so I spoke up and said, "Yeah, some of us don't have a choice, but thanks for that, much appreciated." The woman turned around and began to apologize, and the lady behind the counter attempted to convince her that they were actually really, really good because they were made with coconut flour, but basically, I was pissed.
Now do you walk up to people who are eating food you don't like and point to it and say, "OH, EWWW"? No, because you have manners. Yet you would not BELIEVE the lack of manners that come out when it comes to me and my celiac disease and my eating habits. And for a girl who struggles with eating problems, this never goes well. So here's a handy guide to not being an asshole to someone with celiac.
For those of you who live on other planets without google, celiac is an auto-immune disease (and NOT an allergy) where if you eat gluten, the protein found in many grains, your body decides to wage war on your small intestine. It's different from a wheat allergy, in that, well obviously, that's an allergy, but gluten is found in more grains than just wheat, so celiac folks have to cut out more grains and can't resort to, like, spelt, which has gluten. It's genetic, and it's estimated 1 out of every 113 people has it, so it's not especially rare. A lot of people have it and do not know, or they get diagnosed later in life (and some people with very bad arthritis go on gluten-free diets to reduce pain - gluten seems to cause a lot of swelling in the body). Many people who have been diagnosed with other illnesses, like Crohn's or Irritable Bowel Syndrome, are now getting tested for celiac's and finding that was actually the problem in the first place.
My stomach and digestive system used to be a MESS. For a long time, doctors and I assumed it was because I got so very very sick when I lived in India when I was 20 and 21 - and I do still have parasite problems, like amoebic dysentery flare-ups - those never totally go away (and they are as fun as they sound). But the problems just kept getting worse in my 20's - my stomach was often painfully big and bloated, I almost always had gut pain, I was tired and felt like I wasn't getting enough nutrition from food, I couldn't digest anything well. I finally had a doctor when I was 26 who said, um, I don't think this is just parasites, I think there is something else going on - and hooboy, was she right. The first week I was off gluten, it was like the very angels of heaven had come down and were singing hallelujah choruses just for me - the pain disappeared. The bloat was gone. I was sleeping well, feeling rested. I had more energy than I could ever remember. It felt nothing short of miraculous.
It thus took a while for the realization that this would also kind of suck, being gluten-free, to sink in. It means that my food is more expensive, I have trouble finding snacks if I need them and I am out and about (and I am hyploglycemic, so sometimes, I NEED THEM; I usually have to make sure I always have something on me), I can't do social things like eat pizza or drink beer, I have to cook a lot, it makes it hard for people to cook for me, I have to quiz waitstaff at restaurants and scour menus and ingredients lists, and I pretty much have to think about what I am putting in my body ALL THE TIME. And for someone who can get into pretty fucking unhealthy spirals over what I put in my mouth, this is not really helpful.
So, here's some things that are ALSO not helpful:
1. Do not react to someone telling you they have celiac by announcing that that sucks. As I've stated, WE KNOW. Also, it doesn't, and every time I try to be a normal person and eat wheat, I remember why it is awesome that I do not anymore. Do not look at the person with celiac as if you now can only pity them. I promise you, they are a lot happier to not be eating gluten at this point.
2. Don't get cranky if there is a thing involving cake for someone's birthday and I don't go. Look, no, I don't always need to eat what everyone else is eating and I don't always need to be accommodated (and I am a vegetarian, so I got over this long ago), but what WILL happen if I have no cake is someone will ask me if I am on a diet, which will make me want to stab them, and then I will have to explain why, and then answer all their questions (This usually begins with, "Oh my god, so what can you eat??? And if I am not feeling indulgent, I will only say, "ONLY GRASS. I have to go out and graze with the cows"), and then they will react with #1 above, and then I will have to go through this EIGHT MORE TIMES. Also, I will get at least three reactions like #3 below, and these are infinitely WORSE.
3. DO NOT TELL ME HOW LUCKY I AM BECAUSE THIS PROBABLY MEANS I CAN STAY THINNER. This is not a weight loss tool, how dare you suggest that about my auto-immune disease, and also, FUCK YOU.
4. Fucking google, people. Use it. Maybe I don't feel like talking about my celiacs today. Go learn yourself. If you are dying to know whether I can eat a certain thing or not, that's why phones connect to the interwebs now.
5. Do not announce you cannot survive/would die without pizza or beer or WHATEVER. You're being hyperbolic and stupid. You're also erasing the fact that people with celiac don't have a choice, and now you're just throwing their limited diets in their faces. Also, you are an ego-centric prick, and if you say this, I will respond to you with, "I know, I have to talk myself out of suicide EVERY DAY," and then I will glare at you in such a way as to make you uncomfortable, and it's really hard to tell whether I am kidding or not sometimes. You will feel bad. So let's not go through this.
6. If you are willing to cook for me for dinner or a potluck, great! Thank you! Now please do not text me every three seconds about whether the ingredients you are putting in are safe or not! See #4. Also, if the google doesn't know, I don't know either, so don't ask.
7. People with celiac are not on diets. I used to have a friend who would dangle bites of brownie or cake in front of me and say, "You know you want a bite," trying to tempt me into eating it. I am not trying to cut calories. You are not tempting me into eating yummy sweets I am depriving myself of by choice; no, what you are asking me to do is hurt myself, cause myself pain, and make myself sick. That's not cool.
8. ALSO do not eat yummy sweets I cannot have in front of me and announce, "Oh my god, I am so sorry you can't eat this, it's so good." You are now just as much a prick as the fucker in #5. But also don't say, oh, I won't eat this in front of you because you can't have it. I don't need to be coddled. I will not cry if you do. I am quite fine with you eating whatever in front of me. Just don't be precious about it.
9. DO NOT ALWAYS MAKE ME PICK THE FUCKING RESTAURANT. You would be amazed at how good I am at picking out the things I can eat from any menu. And if I have a problem with your choice, or I'm pretty sure I can't find much there, I will say something, but do not put all meal decisions (even the ones we make at home) on me.
10. All the weird ways that people make food and the food we put in our mouths and our eating habits public and about morality and up for comment, especially when it comes to women? All that shit, do no transfer it to me. What I eat is not up for comment. Don't put your eating issues on my disease, thanks.
I am quite sure there are more, but I am tired. But, if you are my friend, and you manage to not violate any of the above, I will make you some gluten-free brownies someday that will knock your socks off. You will take a bite, and groan, and your eyes will roll back in your head, and it will never occur to you that you need to inform me my celiac disease must suck ever, ever again.
*** Edited to add - someone brought up appropriate responses? I put them in a comment here.