Celiac disease is simple: eat no gluten and feel better. But ever since the start it was anything but simple.
What you don’t know is it took me 2 years of constant stomach pain before I even got diagnosed. My family and I were relieved when I was finally diagnosed (which as of December 8th, 2019, I have been diagnosed for 5 years), because that meant that we hadn’t been making any of the pain up.
The relief faded quickly because it turns out celiac wasn’t as easy as just going on a measly old gluten-free diet, we had to change the way we live our lives completely.
Before there were so many options of restaurants that typical teenagers rave about like Taco Bell, McDonald’s , Chick-Fil-A, and now I can count on one hand the restaurants that I can eat safely at.
Celiac Disease is an autoimmune disease that damages the small intestine when gluten (barley, wheat, gluten, rye, malt) is consumed. The only “cure” or treatment is going on a strict gluten-free diet for life.
It’s hard because everywhere I do go out to eat there are always so many questions I have to ask to make sure I don’t have a reaction. Because if I were to eat gluten I get insane stomachaches, throwing up, migraines, and even brain fog.
Are there separate pans that my food will be made in away from gluten?
Is there a separate workplace where my food will be prepared?
Is there anything that you add in the food that would make it not gluten-free?
Are their gluten buns grilled on the same grill as my burger?
Are their fries fried in the same fryer with breaded chicken nuggets?
And I don’t want to ask too little questions because then I could risk missing something and getting sick, but then there is the unrealistic fear, that if I ask too many questions workers will get annoyed and spit in my food.
Although that’s not the biggest fear of ours because frankly we don’t really out that much anymore, and plus there are more things to the world than worrying about going out for food.
As a kid and a teen, I always seemed to separate the world into gluten eaters and non-gluten eaters like myself, feeling like I lived a different childhood than others.
Parties that my friends would attend with only a present and a smiling face, I would attend with 3 or 4 Tupperware containers full of food and cake for me to eat. It was great when I found people that found it unacceptable that I would have to provide everything for myself.
And that’s when I found out my true friends, my friends that would, when I came over, make sure they have meals for me, snacks for me, desserts for me. Gosh, let me just tell you I have some amazing friends!
They care for me better than any other friend would. I remember the first time I had a truly long conversation with one of my friends at a Burger King. We were there with our church, early when I was diagnosed, and I had ordered a burger with no bun (obviously).
We sat and ate and she asked me question after question, after question about celiac, eager to know more and how to support me. A couple of days ago we even went out to lunch, and she made sure that we went somewhere where I’d be safe. (So if you’re reading this Gray, you’re the bomb!)
Not only friends, but family too, I’m talking about unity with my friends, but multiply that by 50 and that’s how much stronger my family became. Especially, my mom, my mom is a super mom she really is; she insists that she is not a cool mom, but I seriously beg to differ.
Since I am the only person in my family to have this disease, my whole house isn’t all dedicated to gluten-free. Yet as awesome as my mom is she cooks every meal for us, containing no gluten. And she has gotten really good at perfecting recipes like gluten-free biscuits, and gluten-free noodles which are amazing, and taste like its gluten counterpart.
She is also the person that I depend on for almost everything, and I love her for that. I can come home and tell her that tomorrow we will be having pizza in a class, and she will make sure that I am not the odd one out.
My dad has also gone out of his way to use his amazing barbecuing and smoking abilities to make amazing treats for me with gluten-free spices he finds. Not to mention my little sister that at one time wanted to grow up and be a gluten-free baker, so she can make things her sister could eat.
One thing I have learned about this experience is that no matter where I go, I educate more and more people about my disease. The most important thing to me is advocating for myself and the people that also have this disease; because as one of my favorite gluten-free bloggers, The Gluten Dude says, “We are real people with a real disease.”
Speaking of Gluten Dude, he also made a wall of the faces of celiac disease, filled with exactly 1,567 faces and of those, a little fifth grade me is on there proud as can be.