I am 12 years old and in January 2021, I was diagnosed with celiac disease. We stumbled upon my diagnosis thanks to the Ask Study (auto immune screening for kids, https://www.askhealth.org). I was one of the asymptomatic cases, so we had no clue that I had severe villous atrophy damage in my small intestine. What's that mean? The tiny fingers in my stomach lining were gone and when I would eat foods containing the protein gluten (contained in the grains wheat, barley, and rye), the gluten would trigger an attack by my immune system in my intestinal villi.
Celiac disease is a chronic autoimmune disease that affects up to 1-3% of the population. Kids with celiac disease can have poor growth, nutrient deficiencies, and gastrointestinal symptoms, as well as many more symptoms. The Colorado Center for Celiac Disease diagnoses over 400 kids with celiac disease every year, and their doctors, nurses, dietitians, and psychologist provide multidisciplinary care.
Currently the only treatment for celiac disease is a strict, lifelong gluten-free diet, which I am now following. Despite this, many insurances unfortunately do not cover a dietitian visit for patients with celiac disease. Starting the gluten-free diet can be challenging and sometimes overwhelming, and it is essential to have the support of a dietitian with celiac disease expertise. Children's Hospital's Center for Celiac Disease has helped our family understand and learn about celiac disease. They are helping me live a normal life as a kid with celiac disease, which is so important for a kid my age.
I am so excited to be part of the Wheatless Warriors and join other kids who have celiac disease. Our Courage Classic team, the Wheatless Warriors, is raising money to provide scholarships so that all families will be able to get the same comprehensive gluten-free diet education at diagnosis I received, even when insurance does not cover it. I will be doing the Courage Classic virtually this year.
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