Describe your life prior to diagnosis:
As long as I can remember, I was a hungry child. I ate so much and yet was still always hungry not too long after eating. As I got older doctors would tell my mother that my inability to focus was just normal for my age, that the intense migraines were probably from all the video games I played, that my weight gain was from eating so much and that the hunger was from hormones.
As I entered middle school, I noticed everything I’d eat would cause flu-like symptoms, such as stomach aches, body aches, loss of energy and, occasionally, vomiting. My quality of life as a middle-schooler wasn’t so great and I remember sleeping half of my childhood away.
It wasn’t until around sixth grade when I visited a dietitian that I was diagnosed with celiac disease.
Once I went on my new diet, I felt alienated from the others in school. As soon as they heard, students would try to sneak food to me that I couldn’t eat, and teachers were full of anxiety whenever there was a birthday party or a class party with food involved. That’s when I knew my life changed.
That first week of the diet I had to sit in the cafeteria manager’s office. I remember spending almost a whole morning reviewing all the food I couldn’t have. The only food I could eat was tuna salad and rice cakes. In my first year of being gluten-free, I ate tuna fish and rice cakes for lunch every day at school.
Things didn’t seem to improve until I was in eighth grade. That year I made the honor roll every semester, joined the golf team, and had the energy to walk the whole golf course, even while carrying my golf bag. I was in FFA and robotics, and I was going to theme parks with my friends. Never again did I throw up after eating food, and the migraines were gone. I went from being a young girl that was almost 200 lbs to being at my healthy BMI of 150 lbs.
I started thriving and to this day I embrace my life with celiac disease. I even started a local support group.
How long did it take for you to get diagnosed since your first symptoms?
About five years.
Do you believe anything could have sped up your diagnosis? If so, please explain:
Yes, pediatricians need more information about celiac disease and its symptoms. It shouldn’t be a test that you take only if you have a family history of the disease.
Describe your experience with living with celiac disease:
I’m thriving, I feel like I have energy. I feel less ill, and I can concentrate and use my hands better.
There’s some difficulty with events, restaurants and working. But it’s nothing you can’t get around.
I advocate the best I can, and I want to help the community. Luckily anyone that is diagnosed with celiac disease today has so many options—but that doesn’t stop anyone from needing help. People need to know about celiac disease.
