Lucía Jayde OchoaThe Voices of Celiac Disease

“I know that if I want a better world for my son, our community and myself, I have to start raising awareness.”

Mother and son side-hugging. Both are wearing green, the official color of celiac disease.

My name is Lucía Jayde Ochoa and my seven-year-old son is Jayden. I live in the twin city of Texarkana, Arkansas, right on the border with Texas. I work on the Texas side, and I like to say we are twice as blessed!

It took years to receive my celiac diagnosis, but it finally happened ten years ago. It wasn’t easy. Going from doctor to doctor, changing one thing after another, and nothing getting better was exhausting. Going from taking several pills a day to a diagnosis of partially paralyzed intestines, horrible chronic migraines, and craziness was tiring and expensive. However, nothing compared to watching my son, Jayden, go through it.

He received a diagnosis when he was five years old. It was challenging to explain to a little boy that he could no longer have what he loved. I had to advocate for him to be safe and not left out. It was not an easy task because so much revolves around food! I had already developed food anxiety, but it got worse. At any party, meeting, or social event, I have to be vigilant and pay attention to what is touching and whether or not serving utensils are being shared. I have to ask about what ingredients are used and explain what gluten is, and I constantly worry about not being able to eat safely. I often did not eat during working meetings, conference lunches, or social events; it was easier that way. I still have days like that even now. However, I am unwilling to let Jayden go through the same struggle.

In the beginning, I felt uncomfortable and could feel the looks of others around me as I asked all kinds of questions. I had no choice! I had to be okay with being what seemed like “that one person.” I am that one person who will text the party host, call every restaurant, and double-check even when they would tell me the food is gluten-free. I am that one person who will question the snacks and food at events. I am that one person who constantly calls the teacher about snacks and foods in the classroom and races to show up at parties and events with a container for my son and me because we simply have no choice. I had to learn to be okay in my skin and teach my son to be responsible with his strict diet and accept himself the way he is. I had to choose to stand up for Jayden and myself.

It is not always an easy journey. There are still hard days. Listening to his prayer for a cure still makes me cry many nights, but I have to stand firm so he learns to do the same. I have realized that if I do not raise my voice, if I am not willing to fight for us, then who?

Much work still needs to be done. Celiac disease is still very misunderstood. It is also an emotional and financial burden, and I realize that many are not so fortunate to be able to afford what is needed to live somewhat of a normal life. So I can no longer settle. My goal is to educate others, and I will continue to make an effort to learn more about celiac disease. I continue to learn to be a celiac warrior and teach Jayden to be one.

Living gluten-free in a gluten world is hard for people with celiac disease and non-celiac gluten sensitivity. Things that are meant to be fun, such as social events, school parties, family gatherings, and traveling, become stressful. I know that if I want a better world for my son, our community and myself, I have to start raising awareness.

Jayden and I are blessed to have people around us who love and support us in this journey. I definitely could not do it without our family and those who help to advocate and make Jayden’s world a better place. I find the love and mercy of God in those who help us by supporting and encouraging us on hard days and the strength to continue the fight in my son’s eyes.