Describe your life prior to diagnosis.
According to my parents, I was not a happy toddler. I would always complain of stomach pain after eating, was delayed in reaching many of my physical milestones like walking, and had overall low energy.
How did you find out that you had celiac disease? Did you suspect it beforehand?
After multiple trips to the doctor, and my parents explaining all of my symptoms, in 2010, my pediatrician finally ran blood tests and saw that I had all the markers for celiac.
How long did it take for you to get diagnosed since your first symptoms?
It took about six to twelve months from the onset of my symptoms to my diagnosis. One of the biggest challenges was that my parents had difficulty differentiating between the symptoms of the disease and typical toddler crankiness.
Describe your experience living with celiac disease.
Being diagnosed at four years old, I don’t remember living without celiac disease. It has been a very significant part of my life. Granted, I know I’m very lucky to have had a diagnosis that early, but living with celiac disease back then was not as manageable as it is now. Growing up, I remember that the only breakfast cereals I was able to eat were Gorilla Munch and Rice Chex.
I was also fortunate enough that when I was living at home, we kept a one hundred percent gluten-free household. This was due to my younger brother also being diagnosed with celiac two months after I was. So, the only time I really had to worry about my gluten-free diet was when I was eating outside of the house.
Since then, I have graduated high school and moved into my college dorm. I am currently halfway through my freshman year, and despite living with celiac for almost fifteen years, I have just recently realized how much of an impact living with this disease can have. I’ve had to learn to advocate for myself in the dining halls, talk with university support staff, and cook gluten-free meals in my dorm room using just a microwave.
On top of being a college student adjusting to this new lifestyle, I’m also competing as a NCAA Division 1 athlete on my university’s swimming and diving team. Currently, not only do I have to worry about keeping a strict gluten-free diet, I also have to constantly worry about how my food choices are impacting my athletic performance.
One thing that I have learned through all this is the importance of getting involved with the celiac disease community. It’s helpful to have people that understand what you’re going through to make living with it a little easier. While it is definitely more challenging at times than others, I’ve learned resilience and have grown stronger through having these experiences.
What would a cure mean for you?
A cure would mean not having to worry about accidentally consuming gluten every time I eat something I didn’t prepare myself. It would mean being able to live without the constant fear of being sick just from eating.
