What I learned living with undiagnosed celiac disease for 18 years

For as long as I can remember, I’ve been described as “the sick one.” In every family Christmas video, I’m coughing disturbingly loudly. The only year I ever got perfect attendance, I went to school sick and left early a lot. For most of my life, the time between illnesses was brief and the worst was that we couldn’t figure out what was wrong.

The start of my problems

I spent my childhood constantly in doctors’ offices, confined to bed, explaining to everyone that, yes, yet again, I was sick. My parents did what they could to allow me to live normally, but I barely remember any vacations where I didn’t get sick at least once

At 13, I learned that my ever-present cough, which we’d thought was either allergies or chronic bronchitis was actually a severe case of asthma.

My immune system wasn’t what it should be. The older I got, the worse my health grew. My asthma intensified, my allergies worsened, and I’d miss over 30 days of school a year.

While my health proceeded to get worse, my bones and joints became weaker and weaker

By late middle school/early high school, I began experiencing joint pain for seemingly no reason. I went to orthopedics and physical therapists, did specialized exercises multiple times a day, and took copious amounts of pain meds, but nothing helped.

My bones were also getting weaker. I broke my right arm for the first time in third grade just by falling off my scooter in the driveway. I broke my arm a second time later that year by tripping while running in a parking lot soon after. I broke it yet again while playing basketball and another time at cheerleading practice. In middle school, I sprained it several more times and broke the growth plate while carrying my tenor saxophone.

My parents and doctor decided I should see a specialist, who determined that a birth defect in my right wrist was causing it to be easily broken because my bones didn’t fit together properly. To fix it, they surgically cut one bone, moved the other bone into its correct place, and inserted a titanium plate to hold it all together. I underwent the surgery during Christmas break of eighth grade year.

Three years later, however, my arm rejected the plate. Before I had it removed, you could see a raised-up gray spot just under my skin on my wrist where it was trying to push the plate through my skin.

Freshman year, my ankle started to go down the same path. I tripped during marching band practice and tore all the ligaments in my foot. Throughout the rest of high school, I injured my foot and ankle as many times as I had my wrist.

During all of this, I was experiencing severe pain and couldn’t figure out why. We were concerned it was fibromyalgia, but tests came back inconclusive. We were at a loss – nothing was helping, and we still couldn’t find any answers.

The summer before my senior year of high school, things took a turn for the absolute worst

I woke up one morning with my face so swollen it looked like I was sucking on a softball. By the end of the day, my jaw was in extreme pain. My father took me to urgent care, where doctors said I probably just had a minor infection. They sent me home with medication, but two days later I was back in intolerable pain, my face swollen to twice the size it was previously.

My cousin came to visit me during my nine day stay in the hospital.

They discovered that I had MRSA, a very serious and often deadly infection, in my face. I was hospitalized for nine days, and it took them several days to find the source of the infection.

It was an abscessed tooth, which required oral surgery to lance and drain, followed by a root canal. They weren’t able to numb my mouth for part of it, which was one of the most traumatizing experiences of my life. I had to be held down by a nurse and my mother as I screamed and writhed due to the pain.

This image was taken two days after my surgery; I was unable to make any facial expressions without severe pain.

After the surgery, we learned I had TMJ, a jaw problem that causes increased pain in the jaw and headaches. The massive swelling caused nerve damage in my cheek. The swelling didn’t go down for over a week, rendering me incapable of making any facial expression – including smiling – without pain. By the time I was able to smile again before classes began, I had missed all of the summer’s senior activities.

The first time I smiled in 20 days

Sadly, it didn’t stop there

About a week into my senior year, I started experiencing horrible migraines. They were so severe that my parents were taking me to the emergency room every night so I could have some relief. I couldn’t even walk because the impact of my foot hitting the ground felt like someone was hitting my head with a hammer. If a door creaked in the house, it felt like someone was driving a spike into my eyebrow. I couldn’t handle the constant pain.

Eventually, they sent me to a neurologist to test different medications. But I had to be put on homebound, where the student is given a teacher to come to their home so they don’t have to attend school or be counted absent. It’s used for people with health concerns like mine, students who have a child to raise, or those in trouble and expelled.

Due to my absence from school, I lost a lot of friends

“Out of sight, out of mind” was the story of my senior year. I couldn’t go to school and only used technology during brief periods of relief from migraines, so I didn’t see much of my friends. Several said they’d come visit me, but either got too busy or didn’t follow through. I could barely leave my bed, I was in pain every day, and felt completely alone.

When I had rare moments of relief from the pain, my mom would take me on outings to cheer me up. We’d never do anything extravagant; sometimes, I’d just sit out on the porch or go to the grocery store with her. I learned how to longboard, but I could only manage to be active for about 30 minutes at a time. Still, those moments of normalcy meant everything to me.

My mother often took and posted pictures of me on these outings on social media because she was glad to see me happy and pain-free, but everyone likes to have an opinion on things, especially in small towns. Seeing these pictures, people who claimed to be my friends would say horrible things to my face and behind my back. 

Some even took to social media to announce how horrible of a person I was for “wasting tax-payer money” and “throwing away an education.” One that sticks in my head the most was a formerly close friend who texted me: “How dare you lie and say you’re sick. You’re only skipping school. You’re the reason people hate teenagers.”

Just because people couldn’t see my illness, they assumed I was lying about it. These attacks became a daily struggle for me, and I became more isolated and more depressed.

I returned to school, and faced a lot of bullying

At this point, my immune system was shot. I couldn’t risk catching more infections, so the doctors recommended that I wear face masks in public. Most of my classes were online (leaving me in the library all day with a maximum of three other students), but my principle decided the mask was too much of a distraction. He called me into his office and said that unless my doctor faxed him a note directly or called him, I couldn’t wear the face mask. I went back to class worried and a little offended; I wasn’t trying to be a distraction or a problem, I just wanted to follow my doctor’s orders.

In my first class, I was immediately faced with the same bullying I had experienced before. People didn’t understand why I had been on homebound and several rumors had made their way around the school during the time that I was gone.

A migraine came on during my second class of the day. I couldn’t look at the computer screen without considerable pain. I was in tears in the library, my head in my hands, when the librarian offered to let me sit in her dark office and find someone to come get me. My mother was out with my sister and my father was at a doctor’s appointment 40 minutes away, so a close friend of mine, Jon Hilgendorf, offered to come and take me home.

After this experience my first day back, my parents had meeting after meeting with the principal, trying to get him to allow me to drop out and get my GED. He, however, “wouldn’t have a drop out on his record” and recommended I transfer to another school and try there. My mother was infuriated and began looking for homeschooling options.

I transferred to an online high school

The online high school allowed me to work at my own pace, but I still had to take medications hourly so I carried them around with me in a bag, rattling everywhere I went. I eventually was unable to continue and had to get my GED. I had fallen behind and couldn’t finish in time, so I was forced to get my GED, rather than receive my diploma.

I also experienced horrible side effects from the medications, including horrific nose bleeds that came out of nowhere and looked like a faucet of blood gushing from my nose. I gained 80 lbs. The medicine also caused seizures in my sleep, as well as petit mal seizures during the day. It completely changed my personality; I was a zombie.

“You became a shell of yourself,” my friend Heather Hilgendorf said. “Those of us who cared about you were so concerned and didn’t know how to help.”

“When it was hard for you to do things, you kept trying to push forward and live your life,” my youth minister and close personal friend, Eric Wilber said.

“I watched while my honor roll student failed her classes because she couldn’t remember the answers from studying the night before. I watched while she left her car running in the parking lot during a doctor’s appointment because she couldn’t remember to turn it off,” my mother said.

We finally discovered the source of all the illnesses

After a life spent battling my own body, at 18 doctors put a name to all the problems: celiac disease.

Celiac disease causes a weak immune system, weak teeth, weak bones, weak joints, and migraines. The doctors hadn’t suspected previously because it is very rare – only 1 percent of the population suffers from it. It’s also hereditary, which means your chances increase when a family member has it. I have two relatives who do.

With celiac disease, your immune system mistakes a consumed particle of gluten for an intruder and attacks it like it would a virus. This causes damage to the intestine and prohibits the body from absorbing nutrients. This is part of what causes the joints, bones, and teeth to be weak. Because we were unaware of this, I had consumed gluten for 18 years, causing 18 years of damage.

My mom recalled that growing up, I had basically existed on bread, “When she was sick or suffered her jaw issues, pasta was sometimes the only thing she could eat. Basically, I had been killing my child.”

It took months to get back to ‘normal’

Following a year of treatment, I finally started to recover. The migraines were less severe and less frequent. After months on a strict gluten-free diet, I could make it through a day without pain. I lost the weight I’d gained from the medicine, had therapy to help with my anxiety and depression, and was finally able to return to school. I had a life again.

Two years later, I graduated community college and made plans to go to JMU. Previously, moving any distance from my doctors and family was impossible, but now I finally had some independence.

Still, eating has become my biggest struggle. Even the tiniest crumb of gluten causes horrendous side effects, and cross-contamination can lead to days of migraines, joint pain, brain fog, digestive issues, and severe stomach pains.

Despite all of this, I’ve persevered

I went onto JMU and not only succeeded, but flourished. I became campus editor of The Tab JMU, I received internships with The Tab, I’ve developed awesome relationships with my teachers, and I’ve improved my writing skills with the hope of making a career out of my passion.

I’m now able to do all the things I thought I’d never have the opportunity to do. I succeeded. I survived.

Having celiac disease completely changed my life. Being trapped by pain for so long made me savor my health and the beauty of life so much more. Before, I had always been shy to express myself due to the bullying I had faced, but now I don’t care. Life is far too short to be concerned with what others thought of me. Since recovery, friends and family have noticed a distinct difference in my personality.

“What I noticed was more of you being let out. You were still you, just with more freedom and more ability to be adventurous,” Eric said.

“You’re not afraid to be who you are, and don’t really seem to care what people think about who and what you are. You express your opinions freely,” Heather observed. With celiac disease, I experienced first-hand that life is simply too short to not express how you feel. I want my life to matter and I want to make a difference, and I can’t do that by remaining quiet and keeping to myself. Anyone can accomplish what they want in life, if they work for it. It won’t always come easy, but that just makes it that more rewarding.