A Sister's Celiac Story

One of the members of our R.O.C.K. (Raising Our Celiac Kids) Charlotte Chapter is Caitlyn Mahoney. Her sister, Jordan, is 11 years old and in the 6th grade. She wrote the following story about her sister's celiac disease as an assignment for school on a true conflict which she has had in her life. The story is quoted word for word from Jordan without any changes. We thought it was a touching example of the feelings a sibling can have in the face of celiac disease and how a diagnosis touches everyone in the family, not just the one diagnosed. A big R.O.C.K. thank you to Jordan for sharing her story!

It all started when my sister, Caitlyn, started eating food when she was a baby. We would feed her animal crackers, or cheese it’s, or toast and not even an hour later, she would be really sick. I mean like 105° fevers, throwing up, leg pains, dehydrated, ect. No one knew what was wrong.

I would spend my afternoons after school in the doctor’s office doing my homework. When I was done, the nurses would get me Junie B. books to read. Caitlyn would just be laying there very sick. She was only about one years old, as pale as a ghost. Of course being her big sister, I was scared. She would be screaming as the doctors held her down putting needles in her arms. Who wouldn’t be scared? This went on for almost a year.

Poor little Caitlyn soon got so sick we had to put her in the hospital. The doctors ran all of these strange testes over and over. When Caitlyn wasn’t being tested, she was sleeping or my mom was holding her and feeding her food which just kept making her sicker. Of course, with just my luck one night when my dad and I went home from the hospital to sleep and get me ready for school we realized that someone had broken in to our house. The sliding glass door in my parents’ room was broken. Clothes and were thrown all over their bedroom and my dog, Scooby- Doo, was going crazy. So that night I slept over at a friend’s house while my dad stayed at home, my mom at the hospital, and my sister still as sick as ever.

Finally, after several hospital visits Caitlyn was to sick to come home. Her immune system was attacking her body and she was really sick. The doctors didn’t know what to do, They had run every test possible. It was a life or death situation. My mom was talking to my granny, who was in England at the time, crying because she didn’t know what to do. My granny asked my mom if we have run a blood test to check for Celiac Disease. At that same time Caitlyn’s doctor’s wife was asking the same questions. Supposedly, this disease can’t cross oceans or so our doctors here in the United States thought. Wrong, they thought that celiac supposedly only happens in Europe. Wrong. The doctors chose to do this blood test and the surgery to check for Celiac Disease. After a week of anxiousness, worries, and sickness, the results were in.

That one random blood test saved my sisters life. Now we are all on a special diet with no wheat, rye, barley, oats, which is a gluten free diet. My sister has never had any food with gluten in it sense that day. Except when she was younger and licked a piece of bread at the store but that’s another story!

Looking back my family and I realize how lucky we were to have all of those wonderful doctors who helped save my sister’s life. If we didn’t diagnose her I don’t even know what would have happened. Would she even still be alive? Would my mom and I ever have been dianogesed with Celiac Disease also? We like think about how many people we have helped sense our journey began. My mom used to go to the grocery store, sit in middle of the aisle, and cry, at the beginning she did not know what foods to feed my sister, We had no one to help us. Now anyone that has just been diagnosed to the Celiac diet have people like us to help them. Back when Caitlyn first got dianogesed all the Gluten Free (GF) stuff tasted horrible!!!And you had very few choices of foods to eat, now you can’t even tell that many of the foods are Gluten Free!

Thanks to the help of all of those doctors and my parents my sister now very rarely gets sick from gluten anymore. The Celiac community has come a long way from seven years ago, and many lives have been forever changed for the better, especially ours.

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