Show Notes

Listeners’ Letter

We’ve been through a lot together, haven’t we? Our relationship used to be terrible and filled with shame. Five years ago, I found Intuitive Eating. I learned that you were not the villain I had cast you as, and I found out how to heal and have peace. It became so easy.

In June, a gastrointestinal specialist had me undergo an endoscopy for an issue unrelated to this letter. When I woke up from anesthesia, he shocked me by telling me he suspected I have Celiac Disease. He ordered further testing, and the diagnosis was confirmed: I have Celiac Disease.

Celiac Disease is an autoimmune condition that impacts the small intestine. It is not an allergy. In response to gluten – a protein found in some grains including wheat, barley, and rye, – the immune system attacks the body’s own villi. Villi are fingerlike projections that line the small intestine and are crucial in absorbing nutrients from food. If someone with Celiac Disease continues to consume gluten, there are major complications possible such as micronutrient deficiencies, the development of other autoimmune conditions, and a higher risk of several cancers. The only treatment is life-long adherence to a gluten-free diet, including avoiding potential cross-contamination, because even a small amount of gluten can cause this reaction. It’s not a disease where it’s okay to take a day off here or there; a single exposure to gluten causes damage that takes the body weeks to recover from.

I was not expecting this diagnosis, but I immediately committed to a lifelong gluten-free diet. I haven’t been tempted to waiver from it for a moment. It’s a decision I make in line with Intuitive Eating to protect my body. I love my body, and I don’t want to cause any more damage; I want it to heal.

Food, I knew this was kind of a special subset in Intuitive Eating, a kind of footnote that is now my entire life. I anticipated this would be hard, and it is, but not at all in the ways I expected. I thought the difficulty would be learning to live without the foods that I love. I imagined I would struggle with cravings for Triscuits, bread, and pizza. But honestly, that’s the easiest part of Celiac Disease.

Here’s where I need your help, food, because right now, these two things make me hate you.

First, having to prepare meals day in and day out is a chore. A day off is rare. I live alone and am solely responsible for feeding myself, so I have to plan, shop for, prepare, and clean up every bite I put in my mouth. Eating out takes a lot of effort, both in scouting out the restaurant’s menu and reviews and in talking to the staff about my dietary needs, and it’s a health risk every time. I can’t just order off of DoorDash or run to Subway for my favorite sandwich if I’m tired one day. To add to this, I am depressed, and the mundane act of chopping, measuring, cooking, eating, and cleaning is impossible. I feel my body craving nutrients that I don’t have the energy to prepare, and I don’t have the energy to prepare the food I crave because I’m not eating the nutrients I need; it’s the worst cycle. I find myself wishing I could photosynthesize like a plant so I never had to stress about you again, food. I resent my own hunger because it means I have to engage with you yet again.

Second, this disease is so isolating. I didn’t realize how much you were a part of human culture until now that I can no longer participate. I used to take for granted the fact that if an event provided refreshments, I could just be fed. I mean, food, I had to bring my own meal to my grandpa’s funeral because there was a luncheon afterward, and I couldn’t eat any of the food there. It was so awful to be in the kitchen preparing my own meal while everyone was out there sharing memories of our loved one. It’s stressful and it’s lonely. I know I can bring my own meal to share, but it just sucks that I ALWAYS have to put in so much effort. Even if someone is nice enough to prepare gluten-free food for me, I have to question them about every step of the process to make sure it is in fact safe for me to eat (and often it isn’t). I’m working on learning the balance between advocating for myself and accommodating for myself, but most of the time it’s easier to just bring my own food and feel apart from everyone else.

Food, it was so nice having an easy relationship with you where I didn’t have to worry. I worked so hard to heal our relationship, and it did heal. But this is a different kind of strain on our relationship, and I’m lost. There doesn’t seem to be an easy solution, or really any solution. I don’t feel like it’s your fault, and I don’t feel like it’s mine. It’s just the reality we’re in. I value my health, and that means you and I have some very strict boundaries. It hasn’t triggered feelings of shame or even restriction in a dieting sense, but I hate what we’ve become. There’s just so much animosity.

I’m afraid to travel. I’m afraid to eat out with my friends. I recently came out as a lesbian and started dating women which is new and exciting and wonderful, but it’s difficult and embarrassing to go on dates because I have to explain so much up front, like how I can’t kiss someone who has eaten gluten until they brush their teeth and rinse their mouth, so I feel like I’m being robbed of love too.

Food, can you just stop being gluten? That would make this much simpler. And if not, what do I do?

Love,

A Sad Celiac