More Than My Disease: Celiac Disease
30 years ago, I was diagnosed with Celiac Disease. A malabsorption of the lower intestine. This disease means I am allergic to gluten, the sugar found in wheat flour. While others refrain from gluten due to a fad or to ‘fit in’, I’m making sure I keep breathing…. This is the story of my diagnosis and how it has affected me.
BIRTH - 9 MONTHS
After 9 months of doctor visits, my parents and doctors were still scratching their heads about my continuous medical ailments. I had been tested for everything cystic fibrosis, AIDS, cancer and many others. All test results were negative. It was becoming a broken record. I would get sick, we would go to the doctor, I would be tested, and no ailments would be found. At one point, my grandparents had filed neglect charges on my parents for failure to thrive. It was terrible.
However, a horrible and glorious day appeared. One morning, when my father came to wake me, he found me in my crib… struggling to breath. This was by far the worst medical issue I had shown. Rushed to the doctor, many medical professionals came to my aid, explaining to my parents the possibilities. None of which, included celiac disease. The reason this was not voiced as a possible option is because normally, back then, people who were diagnosed with this disease were in their mid to late 30s. However, a doctor had suggested an off the wall test. Yes, for celiac disease. When questioned about his suggestion by my folks, they were provided information that no parent wants to hear.
The doctor began to explain that the reason for my breathing issues was due to stool building up through my body. I was LITTERALLY full of shit. He continued by advising that this could be due to paralyzed villi (the little hairs in my intestines), which is normally caused by celiac disease. Immediately, they agreed to the test. As you probably may have guessed by now, the test came back positive. I was the first child in the state of Michigan to be diagnosed with celiac disease. *Way to go me*
My mother was provided a stack of papers the size of a large encyclopedia that included all of the items I could not eat… and no, she didn’t read it all. She just checked the ingredients on boxes like a normal human being.
August 2000: Now a third grader, I’m considered an outcast. No other child had issues with eating pizza. So, naturally, they preyed on me like lions on a deer with a sprained ankle. It was mortifying… but this is not specifically about my school woes. — moving on. One day, a new student felt bad for me that my mom would not give me cookies and handed me one. Like any child with a brain the size of a peanut, I ate it. By recess, I was in antagonizing pain and sent to the nurse. My symptoms were mild, according to her. No fever, no chills — nothing that showed signs of issue other than my complaint of belly pain. When she called my mother, she had the audacity to suggest I was faking my symptom in order to get out of school early.
Thankfully, my mother is intellectual and was aware that, just because there is nothing that can be seen, does not mean there is nothing wrong. She quickly came to pick me up and rushed me to the emergency room. This was the first time I had ever heard of or had my stomach pumped. *It’s not fun*
May 2018: As an annual check, myself and all of my children were tested for celiac disease. Mine to see if it was still present and theirs to see if they had formed the disease. All tests NEGATIVE. Mine included. I could not believe it. Even had the paper printed so I could show my family. I was finally free.
My first taste of gluten was a Chips Ahoy chocolate chip cookie. It was magical. I tried everything; pizza, lasagna, a real sandwich, cake, brownies… you name it. I felt normal for the first time in my life.
March 2019: Another hospital room with bright lights and white walls. Seeing spots and wondering when I will be taken towards the bright light to the unknown. I couldn’t understand, I thought all of these medical issues were behind me. My husband sat at my bedside, reassuring me that everything was going to be okay. In his eyes though, I could see he was worried too. The doctor arrives! Finally, some answers. My jaw falls in my lap as I hear him explain that my previous notification of NED (no evidence of disease) was a result of a faulty test and that I show that I am still burdened with celiac disease. Not only that, but since I have been eating things that my body could not digest properly for almost a year… I may have produced cancer within my body and many tests needed to be done. Bloodwork taken and a colonoscopy scheduled, I was mortified.
No cancer found.
Present Day: I have resigned myself to the fact that this is my life until they lay me in the ground. I no longer get tested for celiac disease annually, although my children still do. It’s frustrating to have to watch the ingredients of everything I consume but I suppose it could be worse. In fact, the most irritating thing about it is I have trouble gaining weight. I have always been small but, as of today, I am 128 pounds. Have not been this small since high school and it’s concerning, to say the least. I’m working on it.
I have taken all of the medical issues that come with this disease in stride and continue to push forward daily. Yes, I complain and get angry. I’m human. But I have never let it beat or consume me.
I am more than my disease.
🧡 Shine Bright, Kayla
Originally published on Medium.com June 1, 2022.
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