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Story of the Month

Gluten-Free Muse: Celiac Disease Feeds My Art, Advocacy and Cooking

sema1Sema was diagnosed at age 7 and encouraged to embrace going gluten-free by her mom.

I awoke with a smile as the delicious scent of waffles drifted into my bedroom. Racing to the kitchen, I found my grandmother pouring batter onto the hot iron. The neat stack of heart-shaped waffles that she had already prepared looked perfect, almost too perfect for someone with little gluten-free experience.

“Are these gluten-free?” I asked. She placed a waffle in my hand. “A little wheat won’t hurt you, dear.” Silencing my disbelief, I calmly put the waffle back and said, “No Grandma, I can’t eat these.”

“Well then I’ll just make you some pancakes,” she concluded.

This was a common scenario with my grandmother. But she eventually overcame her fear and confusion about cooking for someone with celiac disease, and learned how to make the most delicious gluten-free breakfasts. Yet, it wasn’t just the relatives whom my family had to educate.

I was diagnosed with celiac disease 10 years ago, at the age of 7, when there was no gluten-free labeling standard in place. We couldn’t simply go to the store and look for goodies with a gluten-free certification — we had to call every company ourselves. But my mom wanted to make sure that I didn’t feel “cursed” with celiac disease. Instead, she wanted me to embrace it.

sema3Managing gluten at the family meal level is challenge Sema faced with her parents head on.

Not long after the diagnosis, my mom guided me to a room with my eyes covered, as I grinned with anticipation. She told me to look, and there, playfully laid out on the floor, were packaged gluten-free snacks! My mom’s can-do attitude enabled me to view my diet in a different light. From that point on, I was never negative about it.

That isn’t to say there weren’t still hurdles to conquer. Eating is a very social activity, from friendly restaurant meet-ups to school experiences that center on food. For the latter, my mom quickly stepped in, setting up a 504 Plan at my school that required lunch staff to be trained in safe gluten-free food preparation and provided accommodations for me to be included in field trips and class celebrations.

At first, our home was a gluten-free sanctuary. My dad was also diagnosed with celiac disease, and though my mom tested negative, she went gluten-free, too. We changed our whole perspective on food. Instead of prepared foods, we worked with naturally gluten-free ingredients. I learned to cook and bake from scratch, and began creating my own gluten-free recipes.

But when my brother was born, we reintroduced gluten into our kitchen. My parents opted to keep all meals gluten-free, but created a small “gluten zone” where my brother’s sandwiches and snacks are prepared. To avoid cross-contamination, we keep separate toasters, and a small designated pantry for foods containing wheat. Having a shared food space has allowed me to better understand gluten-free challenges for eateries and at my friends’ homes — and how to find solutions.

sema2Sema uses her artistic skills and blog to spread celiac awareness.

With a strong desire to share my perseverance and optimism, I joined the St. Louis Children’s Hospital’s Teen Advisory Council in the seventh grade, and also began to get involved in the growing celiac community. At first, I was disappointed to discover how much negativity surrounded gluten-free living, and frustrated to see how many celiacs “cheat”, claiming the diet is too difficult. So in 2013, I started Eat Without Gluten, a blog of my own recipes, tips and fun gluten-free experiences, to help people fulfill their needs while staying gluten-free, and to offer encouragement for the rough spots.

As my blog began to take shape, I wanted to reach even more people with my other artistic passions. I love to produce videos, so I decided to make learning interesting and more accessible for kids and teens by creating Draw My Life on YouTube.

I handled the drawings, narration and production of the video, which tells my journey with celiac disease in a fun, light-hearted fashion, and has been shared by celiac communities around the world. It has been heartening to meet fans of my video at gluten-free events.

In less than a year from now, I’ll be heading off to college and my plan is to study medicine, and possibly becoming a GI doctor to aid in the diagnosis of celiac and other diseases. But regardless of my pursuits, I want to continue to show the positive side of celiac disease as I go through college, as an adult, and when I have my own kids.

I’m hoping to make a difference for a lifetime.

—Sema Dibooglu, 17, lives with her family in St. Louis, Missouri. See her blog at Eatwithoutgluten.blogspot.com.

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