When my younger sister, Abby, was 2 years old, she became extremely anemic, had a heart murmur and was frequently in pain. My parents took her to Boston Children’s Hospital, where they diagnosed her with celiac disease. Since it’s a genetic disease, we all got tested and I tested positive. That was 12 years ago, when I was five.
Today, I look like a normal teenage girl and if you saw me on the street, you would never know I had Celiac disease. I try to remember this when I see people or meet people for the first time — you never know who has an “invisible” illness like celiac disease.
What is celiac disease?
Celiac disease is an autoimmune disorder in which my body is not able to digest proteins in wheat and gluten, which includes barley, rye and oats. Any amount of gluten can trigger an immune response. Everyone’s response is different, but if I have gluten, I throw up for hours and it’s horrible. Some people with celiac disease don’t have a physical reaction at all.
What does having celiac disease mean to me?
What it meant to me as a 5-year-old:
- I couldn’t eat my favorite cereal: Mini wheats
- I couldn’t go to birthday parties and have cake like the rest of my friends
- I couldn’t have dinner at my friends’ houses and stay overnight (I had to make sure that I had my own food and that I was prepared)
Now, as a teenager, it means that I have to become my own advocate. When I go out to eat at a restaurant, I have to say, “I have celiac disease” and describe what they need to do to prepare my food safely.
When I tell people I have celiac disease, they’ll say, “Oh my gosh, I’m so sorry, I feel so bad for you!” It doesn’t feel good when someone apologizes for your disease. This is my disease, I live with it. It’d be more helpful if they said, “Wow, OK,” and moved on.
What are some common misconceptions about celiac disease?
- A lot of people think celiac disease is an allergy. It’s not an allergy, it is a disease.
- In a lot of magazines, you see people associating “gluten-free”with being “healthy.” The media perpetuates that myth, but it’s not a fad diet — it’s my life.
- The next one might seem like a small thing, but it’s one of my biggest pet peeves. Celiac disease is often mispronounced “celiacs.” It’s important to me that people pronounce my disease correctly; it shows that they’re paying attention.
As a teen patient, what advice would you give to your caregivers?
What kind of teenager would want to go to a hospital? Basically, it’s the last place we would ever want to be — ever. But, yet, we have to come.
We’re on track to becoming independent from our parents, so we appreciate when a staff member talks to us like real humans (not through our parents) and explains what we need to do to take care of our bodies. Also, we need plain English, because no one really understands medical-speak unless they’re a medical professional. And lastly, I love when a Boston Children’s employee has a sense of humor and can make me smile. It makes me feel known.
About the blogger: Emma Frank is a healthy, 18-year-old living with celiac disease. She is cared for by Dr. Dascha Weir, associate director of Boston Children’s Celiac Disease Program. Emma will be studying nutrition and food science this fall at the University of Vermont. Follow Emma and her sister, Abby, @sistersansgluten.