How to deal with celiac disease? Our guest blogger describes the resilient approach that teenage blogger Sema Dibooglu takes—and the secrets to her positive outlook.
Sema Dibooglu, 17, seems like a normal teen with a normal life. She’s sitting with me at PuraVegan café in St. Louis, ready to order a big meal after a long week of final exams. She’s exhausted, but also still filled with pep and sharing a grin—no one would ever guess she has a life-altering autoimmune disease.
The exciting thing for both of us is that we can eat everything on the menu here at PuraVegan. Both Sema and I have celiac disease. And we’re at a 100 percent gluten-free restaurant.
We’re both writers, and bloggers, but Sema, as a teen, has a special niche. Food is social, and never more so than in high school years. She has made it a mission to show her fellow celiac teens that eating can still be safe and social. Her mantra? “It’s what you can eat, not what you can’t. Most food is gluten-free.”
How can this work? After all, doesn’t “most” food to a teenager mean pizza, pasta, bread, cookies, and donuts? The truth is that it’s hard for teens, but maybe not that hard.
PUTTING IT ALL IN PERSPECTIVE
Diagnosed in 1st grade, Sema has somewhere close to 10 years of experience. “A lot of teens think, ‘Oh I can’t eat that; I can’t eat this,’” she says. “But you can! There really are options now, even to eat traditionally gluten-full foods.”
What matters more is that Sema hasn’t let disease or diet define her identity. “It is about what you can eat.”
Perhaps most young people, and celiacs, simply don’t think past that first shock of diagnosis. Part of her success seems to be in what she chooses to focus on.
Life, after all, is gluten-free. And Sema truly doesn’t see life in terms of restriction. Gluten-free is just another prescription, like insulin for a diabetic; she adheres to it so that she has the health to fully engage in a normal life.
Not only is Sema a writer and blogger, she is a musician and singer with a beautiful voice. Between studying like mad to up her ACT’s into the extraordinary level, she performs in her school orchestra and has personally produced her own music videos (as Sema Elin) with professional actors and filming. Among her efforts: a song called “I Am No Longer.” Her creativity and verve to explore life seem a lot bolder than her diagnosis.
We’re both enjoying our pad thai at PuraVegan, but I admit that there aren’t that many dedicated gluten-free restaurants around the world, and cross-contamination and carelessness can be a valid danger for anyone with celiac disease. So what’s it like for her in school?
“It’s totally doable,” she says. “Schools are required to offer safe food for anyone with severe allergies or food-related diseases. You just have to set it up…. It took a little tweaking, and I got to educate the staff a lot about cross-contamination. They were serving my pizza at first on the same pan with the same utensils as the one for everyone else. We had to say, ‘Nope. Not going to work.’”
You just have to be your own advocate, in other words. You have to be proactive.
She just wishes that every teen with celiac could feel the same. No, she doesn’t just wish—she proactively demonstrates that you can like all the food, even with celiac disease, and enjoy it socially and safely.
Finally, she mentions an attitude that brings the only negative sentence out of her I’ve heard the entire time: “I hate that kind of attitude, the negative attitude that says, ‘I’m sick,’ or ‘I have to cheat.’ It is never a good reason to cheat. There shouldn’t ever be a reason to cheat. Or hurt your health. You always have options. Food is really good and most of it you can still eat.”
Sema is set to jet off for the summer to Norway—alone. How can she do it with celiac disease? Well, she’s done it here. She has a commitment to her health, and she knows what she needs—and she is always looking for something new to explore. With that attitude, how could she not do it?
“I just want people, other teens like me, to know they’re not alone,” Sema says. “And this doesn’t have to be a burden.”
I know it’s not a burden; I’ve learned it myself. Celiac disease has given me tremendous opportunities and social connections I never would have had without it. It has taught me, and Sema, to be conscious of our food without being self-conscious, and to use our voices to advocate for ourselves and the more vulnerable.
So she’s off to Norway. Am I worried? Not in the least.
Sema Dibooglu writes at EatWithoutGluten.blogspot.com.
Being gluten-free is a great opportunity to experience the abundance of variety, new cuisines, and cooking techniques, and the freedom to be flexible. Author C.J. Williams has made her own celiac diagnosis “a gymnast’s tumble,” as she says, “instead of a bone-breaking free-fall. Williams writes a blog at TumblingGlutenFree.blogspot.com to explore travel and celiac-safe restaurants around the world, to discuss the joys of whole foods and whole life, and to promote the idea of building an identity beyond a disease.