Being Celiac: What I Miss



I am often tempted to try to get people to understand what life is like as a person with Celiac disease, because I encounter everything from misunderstandings to downright outrageous comments when the subject comes up. Maybe this will enlighten you. Or maybe I just need my moment on the soapbox.

First, let me note that this is written from the perspective of someone living with Celiac disease in 2013. Things have drastically changed even from when I first got diagnosed, in 2005. There are a large number of products available now that weren’t available then. I can get donuts and even restaurant-made pizza–two items I sorely missed when I was first diagnosed. I can go to a nice restaurant and expect them to be professional enough to help me. That was not the case even just eight years ago, when I was diagnosed. I really can’t speak for what people went through when very few gluten-free products were available and absolutely nobody knew what gluten was.

Also, I think many people making thoughtless comments to me are unaware of this fact: I have a disability. I am not following a “fad” diet. I am not trying to lose weight. I have a disability. Thus if you say something to me like, “But there’s just nothing like crunchy, fresh bread,” it’s a little like approaching someone using a wheelchair and saying, “There’s just nothing like hiking up the falls in Yosemite. You aren’t really alive if you can’t do that.” You wouldn’t do that, right? Of course not! You wouldn’t ask them to agree that experiences they are missing out on are really the stuff life is made of. Even if you think it is. But if someday you were forced to stop experiencing the things you currently think are the important things, you wouldn’t kill yourself, like people have told me they would do if they couldn’t eat gluten. Yeah, seriously. People have said that. More than once. Without apparently realizing they just devalued my life.

So here’s what I want to say, though, that you gluten-eaters may not know. It’s not about the food. I really don’t miss food with gluten in it anymore. In fact, I feel kind of terrified by things like loaves of bread, like they are waiting to leap out and poison me. I can’t remember what it tastes like. I am seriously very happy with the foods available to me. I eat bread (OK, usually toasted). I eat cookies. I eat pizza. I eat pasta. I eat chips and candy. They are yummy. I’m lucky enough that I like salads. There are so many foods I cat eat: meat, dairy, veggies, fruits, beans, nuts, rice, corn, potatoes…I am happy.

What I miss is being part of the group. I miss the social rituals and inclusion of being able to eat the food. I miss being able to go to an event and feel confident that I could eat there. I really miss going to restaurants stress free. I get really nervous about going to new places, because sometimes I just can’t find anything to eat, and sometimes I want to eat something other than a salad, when everyone I’m with has a good-smelling hot meal. I miss not having to pack my own food in case there was nothing for me to eat. I didn’t used to have to be disappointed so often. I didn’t used to have to be the only person who didn’t get to eat cake at the wedding, the only person who wasn’t all, “Yay! There’s brunch!”

I feel embarrassed when people approach me with a birthday cupcake and I have to say no. I hate when they say, “This is soooooo good. Too bad you can’t have it.” I hate feeling like I want to explain that I don’t have an eating disorder and I’m not watching my waistline–I just can’t eat the food.

I miss feeling secure that my own offerings would be accepted and I miss being able to make cooking mistakes and not have the result be people deciding that all gluten-free food is just horrible. People tell me stories where the punchline is, “Of course it’s dry and tasteless. It’s gluten free.” Dammit, I can make really good gluten-free food. I adore cooking and baking. Before I knew I was a Celiac and that ingredients would cost far more than I could ever earn back in profit, I wanted to own a bakery. I am proud when I serve food and people enjoy it, and I always have been–but now I need a little extra validation and reassurance.

The other side the coin, however, is something beautiful. I have a whole new love language–being served food that I can eat. When people think of me and make me something I can eat, it’s just amazing. I feel so much more thought of than I did when I would approach a party table and assume all food was fair game. It is this precious gift. It goes beyond just being thought of–it’s the easing of that constant burden of anxiety. Will I be able to eat anything? “Yes. You can eat this.” There are some really good friends out there who almost invariably think of me. The other night, I went to my church’s small group potluck. And for maybe the first time, I didn’t bring an entree that would be enough if nobody else brought anything I could eat. That was amazing. I felt so liberated. I still had my moment of fear before I left–but sure enough, I had more than enough to eat there. Sometimes I feel guilty if people made a big effort, or if I feel like things had to change at an event because of me. But in the course of gradually heading toward maturity, I also know I should tell those guilty feeling to shut up, and just bask in enjoyment and appreciation.

So anyway, if you’re tempted to tell people who can’t eat the food you want to eat that they may as well not be alive–maybe think about what you are saying. Is your brand of cookies actually more important than health, than finally not being in pain every single day, than knowing that by avoiding them you can live a longer life? I know sometimes people just want to make conversation, and I’m happy to discuss the topic, explain what gluten is or what Celiac disease are–or talk about whatever else you want to talk about that isn’t why my life must suck because of its dietary limits. It really doesn’t. Especially if people aren’t telling me it does.


4 responses to “Being Celiac: What I Miss”

  1. Juliana Avatar

    Not that I have cooked much, if anything, for you, but I have cooked a fair bit for friends with less-serious but not-just-preference food issues (milk protein allergies, a pork allergy, and a vegan (yeah, that one was a preference)) in our Friday night dinner small group. None of them are huge deals, but I have appreciated learning what to look for (“casein”, in addition to obvious-milk-ish words, pork casing in chicken sausage, etc.). I guess I think it feels kind of empowering, to learn how to provide good food to people who can’t eat like I do. And I have learned from both you and these other friends to check when I am not certain about an ingredient. So all that to say, I don’t think you ought to feel guilty about people making sure to fix food that you can eat. They might mess up or forget, but the times they get it right are probably not overly burdensome to them. Just a learning experience. And they probably feel pretty good to, knowing that they remembered to provide for you.

    1. Thanks, Juliana. I hope so. I was richly blessed by our MOPS group when Noah was born–several people I didn’t even know cooked and delivered several-course entirely gluten-free meals. It was a blessing on many levels. And hopefully they felt good (if tired, since they were all parents themselves).

  2. Very heart felt. Sorry to hear about your diagnosis but I’m glad you’ve learned to live peacefully with it. I have three friends with Celiac disease and they have taught me so much about it. It truly is debilitating and so hard to live with in this world. One of them is anemic from it and takes naps during the day at work. Another is so sensitive she kept getting sick at one point and couldn’t figure out why. It turned out to be a new lip gloss she was using. Crazy what gluten is found in. There are so many hidden foods that contain gluten. Soy sauce, for crying out loud. I haven’t personally experienced anything similar but Hannah was diagnosed with a peanut allergy at one year old. Talk about making one paranoid. I’m very scared to leave her alone with other people where food is around. One stinkin’ peanut and she could go into anaphylactic shock.

    1. I know what you mean. Our middle child had food allergies as a baby (which he thankfully outgrew). It seems like every time I turn around, someone has given my kids something to eat without asking.

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