When I was 3, I was diagnosed with celiac disease. When you’re so little and your mom says you can’t eat your chicken nuggets anymore it seems like the worst thing in the world. When you bring a book to read to your 3rd grade class about being gluten free, you seem like an outsider. But it doesn’t feel like a big deal when you end up in the nurses office because you ate a blueberry muffin, it’s routine. It doesn’t feel like a big deal when you get sick in your sleep and your bed is all messy, it’s routine. It doesn't feel like a big deal when you get older and drink a little too much and end up hugging the toilet, that’s not the usual routine but you’re used to the feeling. I thought I had been desensitized for so many years because when I would get cross contaminated, my mom or dad would be by my side fetching me wet towels and making sure I had something in my stomach after. When someone messed up my food, I wouldn’t be alone at all instead I would feel safe. My mom would say she’s so sorry, I think it’s because she knew she couldn’t make me feel better and that all I could do was ride it out. My dad would sit on the sink because he would throw up if he was too close but he would say I’m sorry too, even though it wasn't his fault. It’s no one’s fault that I have an auto immune disease but it affects everything.
When my classmates had birthday celebrations in class, I needed to bring my own cupcake or muffin. When the soccer team was organizing snacks we had at halftime, my mom would have to check to see if we needed to bring our own. When I would vacation with family to North Carolina, my mom packed a cooler of gluten free food so I didn’t go hungry. Now it’s a little different, gluten free is more accessible but that doesn't mean it’s not as expensive. When I go to the grocery store at 20, I can’t go for the ramen or the PB&J to save money, instead I have to pay $8 for crumbly bread that won’t make it through the first bite. When I want to go to dinner with friends, I always have to pick the place so I can make sure I eat and that results in having my safe places that I always take people to. It’s boring for others to have to eat the same things over and over when I’m forced to a smaller menu with solely salads and the occasional lettuce instead of burger buns. My boyfriend eats gluten and I can’t which means we make meals together occasionally but when he gets his Hello Fresh delivered I can’t have anything he makes. Whenever someone wants to make a meal for me, I have to double check everything even when I know it makes them feel like I’m doubting their care for me. But the truth is it doesn’t matter how much you care for me. My entire family has probably given me gluten at some point. I’ve accidentally given myself gluten too. I’ve been not careful and regretted it more than a few times.
Since I’ve lived alone, I’ve gotten sick twice. First time I woke up to nausea and knew immediately what was happening. I didn’t know what did it though. Turns out the Organic Texas Toast that I picked up in the ‘Gluten free/ healthier department’ wasn’t actually supposed to be in the gluten free side. It’s my fault for not double checking when I put it in my basket or when I decided to make it. But why is gluten free food considered a diet or a lifestyle even for those that don’t need to be? Why is that section right next to the vegan options and the organic options? There’s no benefit to gluten free food unless gluten bothers you or gives you symptoms. It’s not healthier for you and it still contains ingredients that will make you bloat and feel terrible. It still contains calories and sugar. I already have limited options as it is, why take more away from people like me?
The second time I got sick was 3 days ago. It was from tomato soup I ate and trusted. Silly me. Because I’m sick for as long as I am and can’t keep anything down, I’m dehydrated and like a zombie for a day or two after. If I’m being honest, in the moment I believed I was going to die. I had never been that sick. I couldn’t move, couldn’t breathe, couldn’t think straight. I thought I was going to pass out from the energy my body was taking to purge my system. I lay down on the floor at one point, second guessing my ability to sit up and support my head. I wanted to say I love you to everyone who had helped me through this at points in my life, I wanted to say sorry to anyone who I made uncomfortable. I wondered if dying would be more peaceful than having to continue to go through this right now. Yes, it’s a dark thought but when you spend your life worrying about food and whether you’re going to be punished for making a quick decision about eating something every time you do, it’s lonely and terrifying and unethical.
Whenever I get sick I ask myself ‘why me?’ It’s selfish and annoying and out of touch but it’s all I can ask when I’m vulnerable. I didn’t take this disease seriously until I was alone. I never thought it was a big deal until it started to be. It was always something I mentioned casually in conversation for the sake of others. Something I laughed about to not remember what I go through. I never realized that if my stomach hadn't chosen to get rid of it, my small intestine would suffer to my detriment. This is something I need to take seriously, that is always going to be a part of my life even if I want to be better off without thinking about it. I hate it. It causes me pain even when it’s not. It goes hand in hand with POTS and I didn’t ask for that, I didn’t know about that. I’m educated enough but not all at the same time. I learn new things everyday even though I’ve spent almost 2 decades living with it. Maybe one day a scientist will figure something out and fix all of my problems. But until then, there will always be this.
“How can you live without cake?”
“I would rather die that not eat bread”
“Have you ever wanted to eat something so much you would willingly get sick from it?”
“Ew, I don’t want to try that”
“Your food tastes like cardboard”
“So it just makes your stomach hurt?”
“It’s not that big of a deal”
“I wish I had an excuse to eat healthy”
“That’s probably why you’re so skinny”
“It’s not an allergy, you can’t die from it”
“Why would you ever want to have a kid if there’s a chance they could get it?”
“I would rather die”
“I would rather die”
“I would rather die”
Close to a year ago, a cousin of mine was diagnosed with the same thing. She cannot eat gluten, which constitutes our culture's entire diet. What's worse, in Iraq (where we live) being a Third World country and there are not many alternative food options for gluten-free, vegan, and other food choices. We used to always ask her the same questions, "how did they manage to survive". But she was resilient and stood strong. I saw her strength through you and your similar struggles and I appreciate this outlook into what it's like not being able to eat certain foods. Thank you, this was eye-opening.
Awww Jordan. I hope you’re feeling better. I can’t even imagine having those choices to make. Sticky rice and steak were always a safe bet I remember!! I just remember that you’re gluten free birthday cakes that your mom would make for you, goes down as one of the best cakes I’ve had! Miss you!🥰