Celebrating Celiac Disease Awareness Month

“It’s more than just a diet change,” explains 18-year-old Isabella Gravano outside of her East Bay high school.

Isabella is talking about her medical journey, which started with a bizarre leg fracture during ballet class and simultaneous onset of stomach pain and ended with a diagnosis of celiac disease.

Celiac disease is an inherited autoimmune disorder that affects the digestive process of the small intestine, which is connected to the stomach. Celiac disease is commonly found in the first parts of the small intestine — the duodenum and the jejunum. When a person who has celiac disease consumes gluten (a protein found in wheat, rye and barley), her or his immune system responds by attacking the small intestine, which prevents important nutrients from being absorbed into the body.

After being diagnosed, Isabella’s parents took her to Stanford Medicine Children’s Health, which has the Bay Area’s most comprehensive program for celiac disease. Working with Nasha Khavari, MD, Isabella took the next important steps toward understanding the disorder and the adjustments it would require her to make to her life.

“Learning you have celiac disease requires a huge mindset change, not just for the patient but also for everyone around him or her, including parents, teachers and friends,” said Dr. Khavari. “I was impressed with how quickly Isabella embraced her diagnosis and took ownership of her health by choosing the right foods, taking her vitamins, and checking in regularly for blood work and x-rays.”

According to Isabella, finding independence was a personal journey. “At first, I really relied on my parents to help me navigate how to handle what I ate,” she said. As she gained more confidence (along with a driver’s license and a smartphone), she learned that clear communication is critical and began taking more ownership of her disease. Celiac disease also played a leading role in her decision about which college she should attend. Both the school’s location and whether it provided access to safe, gluten-free foods were important factors for her decision.

The Celiac Disease Program at Stanford Medicine Children’s Health is unique in that it focuses on the whole person — both their physical and emotional health. That’s why our celiac disease care team is composed of not just expert physicians, but also nurse practitioners, social workers and nutritionists.

When Isabella was asked what message she would like to share with others receiving the same diagnosis, she didn’t hesitate: “While celiac disease is a serious autoimmune disease, it’s also not the end of the world. It’s important to communicate, listen to your body and live a normal life. By addressing this disease head on, you’ll be a healthier person in so many ways.”

Said Dr. Khavari, “Isabella is an example of how celiac disease doesn’t have to define you. She’s an advocate, and I know she will achieve what she sets her mind to.”