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