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

By:
in Your Stories
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 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.

Mom’s Can-Do Attitude Inspires

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. Although 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.

Celiac & the Family: the ‘Gluten Zone’

But when my brother was born, we reintroduced gluten into our kitchen. My parents opted to keep all meals gluten-free. However, they created a small “gluten zone,” for preparing my brother’s sandwiches and snacks. To avoid cross-contamination, we kept separate toasters, and a small designated pantry for foods containing wheat. Having a shared food space 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, 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. I was frustrated to see how many celiacs “cheat”, claiming the diet is too difficult.

So, I started Eat Without Gluten, a blog of my own recipes, tips and fun gluten-free experiences. The idea has been to help people fulfill their needs while staying gluten-free, and to offer encouragement for the rough spots.

Celiac Video: Gluten-Free Art, Advocacy

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. It tells my journey with celiac disease in a fun, light-hearted fashion, and has been shared by celiac communities around the world. For years, it was heartening to meet fans of my video at gluten-free events.

Time has passed, and I’ll be completing college soon, graduating in business. I’ve continued to show the positive side of celiac disease as I went through college. I plan to do the same as an adult, and when I have my own kids.

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

Sema Dibooglu is a gluten-free food blogger from St. Louis, Missouri. See her blog Eat Without Gluten.

Related Reading:
Celiac Disease in Children or Teens: The Sneaky Signs
Not Just Celiac: Life with Multiple Autoimmune Conditions
Taking Celiac Seriously: Stand Up for Your Needs With These 5 Helpful Tips