Today is the first day of Celiac Disease Awareness Month. Ten years ago I never dreamed that I would be here writing these words, cooking gluten free food and trying to raise awareness for Celiac Disease. To start the month off, here is a story written by my daughter, Alex.
This is how my daughter remembers the summer she found out she had Celiac Disease. She wrote this in 7th Grade. She is now a very healthy Junior in High School.
A Summer to Remember
For most kids, third grade is one of the easiest years in school, but not for me. I was just like every other kid, I loved to play with my friends, I had a family that loved me, but I was sick. Altogether I missed 36 days of school. My stomach felt like somebody was punching me from the inside. I threw up a lot. My head was burning as if a heater was constantly following me.
I was skinny and pale and never felt good.
Of course, my parents got worried and that is when the first doctor visit happened.
I stumbled into Room Two at the Pediatric Center feeling worried and sick, as usual. I can still remember the smell of the antibacterial soap and rubber gloves. The doctor strode in. He did not know what was wrong, so he decided to draw my blood. It was a completely painful and terrifying experience. I was so dehydrated they could not find a vein. They had to poke my arm several times. Actually I had so many bad blood draws that year that I am hysterically terrified of getting my blood drawn.
After several visits to the doctor and them finally deciding I had more than just the flu, they did a test for Celiac Disease. It was positive.
At the time I had no idea what that was and could not even pronounce the name. We discovered later that Celiac Disease is an autoimmune disorder that requires you to not eat gluten. They said not eating gluten would get ride of my stomachaches. To figure out if I really had Celiac Disease, we had to go see another doctor who was a specialist at Children’s Hospital.
Children’s Hospital is made to look warm and cheery and happy, but all I felt was fear and nervousness.
The cedar brown elevator dinged as my mom and I reached the floor we were looking for. The waiting room was very large and jungle themed. Little kids were playing with the toys but I just sat there and watched my mom fill out paperwork the receptionist gave her. Finally, we were called in and I caught my first glimpse of the doctor.
The doctor was a short, old man that seemed very in-control of the situation. “Well ladies,” he said painfully slowly, “your doctor informed me you came here to find out what is wrong with Alexandra. The best way to find out if she has Celiac Disease is to have her blood drawn and for further reassurance, perform a biopsy of her small intestine.” He explained what would happen and we left. Another blood draw? I was terrified about what would happen.
When I ran out of what I still consider the torture chamber, my mom, who seemed rather stressed, set up an appointment.
“Don’t worry honey everything will be fine,” said my mom comfortingly.
A week later I was back at Children’s Hospital for the blood draws.
I was clutching my two new stuffed animal dogs while I angrily marched into the lab where they would draw my blood. The nurse started to clean off my arm and said annoyed, “Trust me you’ll be fine. I do this all day, every day.” That just freaked me out even more!
The time came and the nurse stuck a needle into my arm and instantly I started crying. Sadly, I looked at the three vials of blood they just forcefully drew from me. That is a sight I will never forget. I drank some disgusting liquid and waited for a whole hour for the next blood draw. The time came and luckily I had a nicer nurse.
“Just relax and breath and look we are already done!”
I left the hospital feeling disgusted and upset but thankful I survived.
A few weeks later, the day came for the biopsy and we were back at Children’s Hospital. I had to get an endoscopy, which is when they stick a tube with a camera on it down your throat, and take a fingerlike thing off your intestine. I was freaking out again. I told them I wanted root beer flavored “laughing gas” while I changed into my uncomfortable, ugly and unforgettable robe. I walked into the room and was even more nervous than before. Needles were everywhere and large machines filled the room. There were at least eight doctors and nurses in the room. I clung to my dad’s leg as they made me lay down on the bed.
“All you have to do is give me three big breaths and listen to the story I am going to tell you,” said the big scary doctor.
Suddenly I woke up in a room full of crying babies and a nurse asked me if I wanted juice or a Popsicle. I refused to eat or drink because obviously the laughing gas was still in effect. They made me drink juice and sit in a silly wheel chair instead of walking. I tried to walk as I left the hospital but that did not work so well!
The test results came back the same day I broke my arm while I was playing at my neighbor’s house. My mom sat me down and told me I had Celiac Disease for sure and that I was not going to be able to eat gluten anymore. I felt like my world was crumbling right in front of me.
Eventually, I realized my life was not ending; it was getting better. Through me we figured out my mom was allergic to dairy and gluten too. I still go in for check-ups at Children’s Hospital but I now tower over the doctor like a skyscraper towers over the streets below. Compared to back then, I am healthy, happy and hardly ever sick!