By Greyson & Elliot LeBlanc
It was a really important day for my family.
Almost 5 years ago my sister and I were diagnosed with celiac disease. It was hard at first because we knew nothing about it and there were almost zero gluten-free options near us. I used to get angry about not having the food that I wanted.
We were lucky that our parents didn’t want it to affect us in a negative way so they have always made sure I have what I need at school and church events. One year they even sent an entire week worth of food to summer camp.
It is a lot easier now than it used to be but there is still a long way to go. Last year on the Celiac Cruise we learned about food insecurity. I learned that a lot of people with celiac do not have the money to support the food we need to treat our celiac disease. So, when my mom told me about this opportunity in DC we immediately said YES!
The first day of Hill Day we got to meet a lot of other people with celiac. Some of them were even friends we had been on cruises with. They made our day by having gluten free breakfast because there is not a gluten-free bakery near our house. We learned that even though we don’t have a cure they are working on it and that gives me hope. I learned that I was very lucky to have had access to doctors and support. All the kids got together and we wrote our dream celiac bills. Most of us said that what we wished for was education for doctors, schools, and the public. Sometimes people can hurt your feelings because they just do not understand what celiac disease is.
The second day of Hill Day we went to Capital Hill. It was very cool to have all my celiac friends stand in front of the capital together. I had practiced the things that I wanted to say but was still a little nervous. After the first meeting my confidence level was higher and I didn’t need to be nervous anymore.
My sister said she felt special that the people wanted to talk to us. It made us feel like what we had to say was important. In one of the meetings someone even told me that he would love to give me a job in a few years. Most importantly I felt like what we were doing was important for other people. Not everyone can speak up or travel and it was cool that we got to advocate for people like me. It made us really happy that we could help.
I am ready to go back next year because we need more education, more research money, and better food labeling. I think if we keep asking and encouraging them, we will eventually get the support that we need. This was definitely one of the best days of my life!
How You Can Get Involved with Celiac Disease Advocacy
Your voice has the power to drive change. By joining the Celiac Disease Foundation’s advocacy efforts like Greyson and Elliot, you can help us push for critical research funding, improved gluten-free labeling, and greater federal recognition of celiac disease. Whether it’s participating in Hill Day, reaching out to your representatives, or sharing your story, every action makes a difference.
Take the next step—sign up as an advocate today and help us make celiac disease a national healthcare priority.