I got diagnosed with celiac disease when I was in my early 40’s. Yeah…it sucked. Yeah…it was overwhelming. Yeah…I hated giving up all of the food I grew up on and loved. But I was an adult. Sh*t happens. You adjust. You move forward.
But what’s it like when you’ve had the disease pretty much all of your life? When you really don’t remember the pre-celiac days? Since you don’t know any other life, is this just your “normal” life? Or does the disease still hit you in ways you abhor?
Here is one teen’s experience shared with me:
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 my fellow celiac. It’s me…Gluten Dude. As I said in my email response this morning, I feel your pain and I’m so sorry. I know it can feel like you are totally alone with your disease. Please know there is a whole community out there that deals with the same feelings that you are feeling.
You did not mention if your friends support you or make you feel bad about it. I am hoping they have your back. And it seems like you have parents who love you and will do anything to keep you healthy. If so, consider yourself blessed. I’ve received tons of emails from young people who have zero support from their family and friends and make them feel like a total inconvenience.
I won’t try to pretend that I know what it’s like to grow up with celiac disease. Just know that if it ever gets the best of you, I’m an email away.
Fyi…you’re totally “cool”. Don’t ever forget that.