I’ve got a backlog of celiac rants from folks eager to share their stories, waiting for their moment in the spotlight. However, an email I received struck a chord with me in a profound way. There’s something about hearing from young people that hits home, serving as a poignant reminder of my own blessings.
Being diagnosed with celiac disease in my early 40s wasn’t a walk in the park. It was a rough ride, to say the least. Giving up cherished foods from my past? It stung. But hey, I was an adult. Life throws you curveballs, and you learn to roll with the punches.
But what’s it like when celiac has been part of your life from the get-go? When the memories of pre-celiac days are hazy at best? Does it become your new “normal,” or does it continue to gnaw at you in ways you can’t ignore?
Here’s one teen’s take on the matter:
“I’m still a teen. I never suffered the way you suffered; my body never hurt, my life didn’t change. Because I don’t remember. I just know nothing before this. Only the fat white bread I used to love. But that’s not the only thing I’ve missed.
Leaving the white bread behind, I was only three and already gluten free, and I didn’t understand. I could not eat the beautiful, colorful, happy things everybody ate. I couldn’t take what I was given by my friends. I couldn’t even eat the butter caramel I so cried about. And I was the only one.
At the parties, I had to bring my own sweet from home. At the school trips, I had to carry a bag with my own food in it. For two, three or four days, no matter how long it lasted, I could never eat what THEY ate, only what I COULD eat. I had never the choice.
I had to pretend I knew the taste of the things they talked about. If they talked about sausages, or Mars bars, or different kinds of chocolate, or the ice cream shop in the corner, I had to pretend that I knew and understood, though I didn’t even know the taste. Cause I never get to try them. I can only agree with my friends that sausages are tasteless. I have to agree that that pizza is good, but actually I have only eaten “the pizza mommy makes”.
And now comes the worst. Me and my friends start going out. Where can we go? Where can I not have to explain them I cannot eat what they want? How many other invitations do I have to turn down? How many times do I have to go to a party eating a sandwich I brought from home? How many times will they ask me why I don’t buy anything from the cafeteria school bar?
Because I can’t. I just can’t.
I am different from you, you are different from me. You can have a cold chocolate drink with little pieces of cookies and whipping cream and vanilla mocha topping or I don’t know what. I have to ask first what they put in that and what it is made from. I have to end up taking a fresh fruit juice, because who knows what there will be in that “milk mixture” or what will be in those proteins of the chocolate bar.
I have no choice. I can never be “cool”. I will be the girl who brings food from home and doesn’t eat your treats, the girl that goes to the pizza party with her own pizza in the backpack.
Thanks for making me different, celiac disease. But I just want to be like everyone else. And I want to have chocolate drinks with whipping cream and biscuits and vanilla mocha toppings.
Thanks for listening.”
Hey there, fellow celiac. It’s me, Gluten Dude. I truly empathize with your struggles, and I’m sincerely sorry for what you’re going through. It can feel incredibly isolating to deal with celiac disease on your own, but please remember that there’s a whole community out there facing similar challenges.
I noticed you didn’t mention whether your friends are supportive or if they make you feel worse about your condition. I hope they’re there for you, offering their understanding and encouragement. From what you’ve shared, it sounds like you have loving parents who prioritize your health, and that’s truly a blessing. Sadly, I’ve heard from many young people who lack support from those closest to them, which only adds to their burden.
I won’t pretend to fully grasp what it’s like to grow up with celiac disease, but I want you to know that I’m here for you if you ever need someone to talk to.
By the way, you’re absolutely “cool.” Never doubt that.