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A.J.'s Story

 
11/10/2008

A.J.'s Story

For the first five years of my life, I was a normal kid like any other 5 year old. I looked like every one else, I acted like everyone else; I ate all the foods that other kids ate. I was normal.

When I turned five, I slowly stopped growing, and my hands felt like rock. My hair started to fall out, and I began to grow a pot belly. I still felt normal but I didn’t look it.

Then, that summer, my parents and I went to Africa to visit my older sister Amy. While I was there, I ate loaves of bread and other wheat products with no major side effects, just a small stomachache here and there.

When we came back, I started kindergarten. I made friends on the playground and loved to play around. Four weeks into school, my mom had packed me my normal Wednesday lunch of noodles. Ten minutes after eating it, I started to get a small stomachache, which I was used to. We went out to the recess yard and worked on digging an escape hole out of kindergarten. That’s when my stomachache got a lot worse. By the end of recess, it was extremely painful and kids were asking if I was ok. I was very pale. The whole class went over to the gym. We stated to have relay races, but I was in so much pain I wanted to go to the nurse. The gym teacher always said, Not without a note! I was in line and the girl in front of me bent down to get on the scooter. Unfortunately, when she was getting on I could no longer bear the pain and vomited on her, not one of my finest moments. When this happened, the gym became silent. If you have ever been in a gym filled with kindergarteners, you know that telling them to be quiet is impossible but I managed to do the impossible. I was sent to the nurse and then home.

My mom took me to the doctor; he told us that it was just a passing flu. Strangely, this flu would not go away. By this time, if my mom put her hands in my hair, she could pull out huge clumps of it. I also lost my spunk and energy and was always sick.

In comparison to other kids, I was so small that I was not on the growth charts. Some of my friends at school became scared of me, but we still dug our hole to freedom at recess together.

Other than that I felt like an outcast, alone and different. Even today I will never forget those feelings. Seeing the nurse practically became one of my subjects. I can still remember that room from the medicine that she used, to the way her furniture was arranged. The entire class seemed to grow but I didn’t. I stayed the same.

Soon, frequent visits to the hospital were normal. Eventually, we made a schedule of what to do. Usually, around midnight I would be awakened and told to take a shower to wash off from being sick in my sleep. After the shower, I would run around or do something to try to stop the pain. My mom would put a hot water bottle on my stomach and would ask what it feels like and if it was as bad as the other day. Then she would put me in the car and go to the hospital. When we talked to the doctor, he would always say that I just had the flu and it would go away soon. When we got back to the house my mom would put the bottle back on my stomach and try to put me back to sleep. I would pretend to sleep so she would go back to bed. Because of this I would lose tons of sleep, and sometimes I would never sleep.

We felt like we belonged to the Flu of the Month club with ever visit to the doctors.

My parents were dreading the upcoming spring when they would travel to Cuba and leave my younger sister and me in the care of my Uncle Larry. Of course, five days after they left, I had the worst stomachache I’d ever had. I woke my uncle up. He asked if I was okay. As my uncle describes, he looked at me and a missile shot out of my mouth. After that, I continued to vomit until I had nothing left in me. Then, after that, I started to run around to try to stop the pain. The entire time my uncle is trying to help me. About one o’clock in the morning, after two hours of chaos, we decided to go to the hospital. I knew by now how to get there and what room to go to. When we got there the doctor diagnosed me with another type of flu virus.

When my parents came back from Cuba, they decided to take me to a specialist; this flu the doctors talked about would not go away. It just seemed to get worse. So my mom got me the earliest appointment she could get. We went to CHOP, the Children’s Hospital of Philadelphia. When we were there, they took tons of blood samples and sent them to the lab. In a day, they told her to come back and they found out what was wrong. When we were there they told us that I had Celiac. They explained that meant I could not eat anything with wheat or gluten, which is the protein from wheat. They also told her a list of outlawed foods. They also told my mom to get me a liver biopsy; with this biopsy it showed that I had liver damage.

The entire ride home from the doctor’s office, my mom tried to explain what the diagnosis meant. But my head was swimming with the foods I would no longer be able to eat-NO MORE BERTUCCI’S PIZZA!!!!

The effects of all the wheat I had eaten for years were still looming over me. I had to make difficult changes in my life. I couldn’t have pizza or even cake at birthday parties! My two best friends from pre- kindergarten, Matthew and Tripp, have helped me through this difficult time.

Even though I have this disease, I have accomplished many things in sports like football, skiing and baseball. Like most kids, I had to work hard but sometimes I had to work extra hard. To protect myself, I now take my lunch to school each day. Sometimes I may forget but my backup plan is either to have a salad for lunch or wait until after school and stop by the WaWa!

It’s always good to have good friends to help you through these times. Even my friend’s parents help me out with keeping my gluten-free stash on hand when I visit. I am thankful for that. Also, I am thankful for the support my family gives me to deal with this disease.

My mom always tells me I was on the Atkins’s diet before Atkins’s was cool.

Does this story sound similar to your or a family members? You might have celiac disease, find out now, take our celiac disease symptoms checklist.

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