“It has helped me determine which of my friends are worth keeping because they would make sure I have food to eat and make sure it is safe for me.”
The first day of second grade started it all. My mom thought my stomach issues were from anxiety about having to go to school. This was the first time my dad wasn’t there because he decided to go to work early instead. After several days of constant stomach aches and pain, we made an appointment at the doctor’s office. After several tests, being pricked for allergy tests, and lastly an endoscopy, I was diagnosed with Celiac Disease. My life was absolutely flipped upside down. The loss of all my favorite foods like cinnamon rolls, bagels, cereal, pasta, and the list goes on and on. The worst thing about it is going out to eat. When my family wants to go out to eat we have to look at the menu before going to make sure there is something to eat for me. If we go out with my extended family, and the restaurant is already chosen, if they don’t have anything for me to eat then I will sit there and watch everyone enjoy their favorite foods. Even going to a birthday party or hanging out with my friends “Lily, can you bring snacks for yourself?” Having to provide my own food whenever I go out is part of my life now, but that is the daily challenge I face.
Going back to restaurants, I have a list of questions to make sure my food is not contaminated. “Can you please wash your hands and change your gloves?” “Can you use a different pizza cutter?” “Will you make sure there is no cross-contamination?” And some restaurants I have been to when I ask “Do you have gluten-free food?” “Is that with no milk or eggs? Then we have to find a different place to eat because we know at the moment everything will be going downhill. When I do ingest the piece of gluten, the rest of the day is gone, it is now time to lay in bed in pain and cancel the rest of my plans. The fear I have of going out to eat will forever stay with me.
“What is Celiac Disease,” I get asked several times. The simple definition is an autoimmune and chronic digestive disorder that causes damage to the small intestine. The diagnosis did not only affect my diet, but it also affected my personality. I have become a more independent woman, who has learned to speak up for herself more. I believe this has become a very important part of my life today. It has helped me determine which of my friends are worth keeping because they would make sure I have food to eat and make sure it is safe for me. Before I was embarrassed about it, but now I will not allow it to control my life anymore. I am extremely grateful for my friends. My celiac will now be with me for life. It is now part of my identity, it helps me show who I am, but it doesn’t define me. Maybe I can change the future of celiac. We will see.
- Lily Q.