Describe your life prior to diagnosis.
Before being diagnosed with celiac disease, I could eat whatever I wanted to. I thought of myself as lucky that I didn’t have any allergies or health conditions that my other family members experienced. However, I would get random stomachaches and feel uncomfortable in school, not knowing what was wrong with me. One time, I even threw up at my grandma’s house after eating a whole bowl of mac and cheese. I was underweight my whole life and on the shorter side, and since my family tended to be skinny, it was expected and considered normal for me.
How long did it take for you to get diagnosed since your first symptoms? Is there anything that could have led to you being diagnosed sooner?
My mom had heard about celiac disease from one of my classmates who was diagnosed with similar symptoms as I had. She brought it up to my doctor, and I was ordered a tTg antibody blood test to detect celiac disease. When the results came back positive, I was put on a gluten-free diet for six months. To confirm my diagnosis, I had to eat gluten for a month and then take a biopsy of my damaged intestinal tissue. My primary pediatric doctor [made the diagnosis].
The initial suggestion to test for celiac disease until the endoscopy confirmed my results [took] around a year or less. This was a relatively speedy diagnosis and I was lucky to have knowledgeable doctors who addressed my concerns and symptoms.
Describe your experience living with celiac disease.
Living with celiac disease hasn’t been easy, especially when navigating social situations in which food is a main subject. At school, I’ve struggled finding food that works for me, and I always have to look at menus or talk to the chefs before getting my meals. With celiac disease, dining out, traveling, or even hanging out with friends becomes significantly more isolating. Explaining my needs and constantly answering questions can feel repetitive and tiresome. And still, many people have never even heard of the condition.
What would a cure mean for you?
A cure for me would alter my life. It would mean simplicity; I would have the ability to be more spontaneous in planning events and getting meals on the go. I wouldn’t suffer with a bad stomachache every time I accidentally ate gluten, and I wouldn’t feel left out at birthday parties and school settings.
As a result of the social struggles I had been accumulating over the past 7 years, I decided to make a change. Explaining the burden of celiac disease a hundred times over to everyone in my life was exhausting, and I realized I wasn’t alone in my struggles. For my Girl Scout Gold Award project, I decided to address the root issue of these problems: the lack of education surrounding celiac disease. By collecting short stories from people with celiac disease, I wrote a book that captures the pains, frustrations, and joys of celiac disease in daily life through an assortment of personal experiences. Interviewing and surveying people about their personal experiences not only made me connect with others in my community, but it also taught me a lot about celiac disease. Many symptoms, experiences, and struggles that others experienced were foreign to me, even with my seven years with celiac, and it made me realize how important telling these stories were.
If you are interested in hearing more personal stories about living with celiac disease, my book can be found here!
For more information, my website is invisiblegrains.org and you can find me on Instagram @invisiblegrains!