Kerber fires back at celiac disease
January 30, 2018
Sarah Kerber stood in front of the full-length mirror on the back of her bedroom door, taking in all four feet and seven inches of herself. A blue eyed, babyfaced girl gazed back at her, the same face that had followed her for the past twelve years. She formed her mouth into a smile and the face revealed its white teeth in straight rows, untouched by the braces that often haunted other middle schoolers. Her hand reached up to touch her cheek, and the girl did the same, grazing her fingers over the bumpy patch of skin among her freckled face. Sarah took one last comb through her straightened brown hair and gave the girl a smile in goodbye before walking out the door to go to a doctor appointment.
Under the scrutinizing eye, Sarah was perfectly healthy. She had never broken a bone, she enjoyed playing fastpitch softball in the summer, and she ate most of her vegetables at the dinner table. She was completely unaware of her immune system rapidly assembling its army for an attack against her small intestine. That would be changed by a single diagnosis.
“Sarah has a condition called Celiac Disease,” said Doctor Kennedy, reading off the lab results . The first shots, they learned, had already been fired.
Celiac disease is an autoimmune disease that plays out as a relatively silent battle in the small intestine. It is a protein-against-protein warfare as gluten enters the digestional tract. The proteinous autoantibodies are the body’s primary line of defense. They target the villi, the small, hair-like structures lining the intestinal wall that absorb nutrients into the body. As the villi attempt to absorb incoming gluten, the autoantibodies launch an attack. In result, the villi are damaged and the body is no longer able to absorb the nutrients essential for growth.
Sarah was living a normal life on the outside. The inside had become a warzone.
The revelation
It began as a routine visit to the pediatric clinic. Sarah and her mother, Jane, were met by a tall woman with peppered, cropped hair and a slightly hooked nose. The familiar face belonged to Dr. Shelly Strong, Sarah’s life-long pediatrician. They sat across from Dr. Strong in a small examination room used for routine check ups as Jane expressed her concern about Sarah’s seemingly delayed puberty.
“It’s normal for kids not to be following all of the trends and to sometimes be in the lower percentiles,” Dr. Strong assured the two. It was definitely noticeable that Sarah was on the smaller side of the kids her age. She had heard her share of short jokes from her peers that were already in the five foot range. However, it was evident that Sarah’s growth was anything but normal. While her growth chart should be indicating more and more growth, it instead was already beginning to plateau like that of a 16 year old finishing puberty.
Dr. Strong walked the pair down the hall to the blood drawing station where Sarah sat down and offered her arm to the nurse. With a slight pinch, the shining needle entered her arm. It would be the first of many in the weeks to come. It drew out a vile of the red liquid that Dr. Strong thought would reveal the truth to the mystery behind Sarah’s unusual growth. The test results they got back added even more pieces to the puzzle, and it was clear that the whole picture could not be pieced together with blood tests alone.
“After reading the test results, the doctors told us to do follow up tests because they couldn’t tell directly how severe it was. But at the time, we didn’t even know what ‘it’ was,” Sarah, now 18, explained. “It was at that point that they referred us to the gastroenterologist.”
The endoscopy
Sarah and her family were back in the waiting room, an environment with which they had become more familiarized over the past few weeks. The still clueless doctors were going to perform an endoscopy on Sarah to try and identify the problem. She sat among the rows of empty chairs and busied herself with magazines, trying to distract her mind that was jumping to conclusions.
“I remember texting all of my friends at school saying ‘alright guys, I’m about to go in. Pray for me,’ and I posted something on instagram about it,” recalled Sarah. “I was being a little bit dramatic, but to me, it was surgery.”
A nurse called the family back, and a wave of panic hit Sarah who did not have much idea of what life would be like walking out. The doctor who sat them down to explain the procedure had no clue either.
“If Sarah has this disease, this is how it works in her body,” explained Dr. Kennedy, the gastroenterologist that would be performing the procedure. She went down a list of possible causes, feeding Sarah’s mind more nerve wracking thoughts with each name mentioned.
They were going to stick a long, snake like camera down Sarah’s throat to examine the problem from the inside, she told them.
The nurse came back and whisked Sarah away. She changed into a hospital gown and again was prodded by a needle searching for a plump vein to pierce. Her parents walked her to the double doors where they exchanged their goodbyes.
“The point when I had to leave my parents behind me was when I knew I was on my own,” described Sarah.
As soon as she sat on the bed in the room behind the doors, nurses bustled around her, strapping on heart rate monitors, a nose strip for breathing and a piece for her mouth that the camera would be put down. A pungent anesthetic was sprayed down her opened throat.
“It was the worst taste I’d ever experienced. Imagine a numbing cough syrup times five,” said Sarah in disgust.
“Count backwards from 10 and think of happy thoughts,” a voice instructed her as she laid on her back.
“10…9…”
The sounds of the room became like distant voices in a dream.
“8…”
Her eyelids were slamming shut as if they were weighted. When was the last time she slept?
“7…”
Sleep sounded like a really good idea.
“6…”
She was down for the count. The doctors took it as their cue and began.
The camera snaked down Sarah’s throat and entered the battlefield.
Diagnosis
“Sarah has a condition called Celiac Disease,” explained Dr. Kennedy.
The Kerbers had spent hours waiting for Sarah to get up, to get back the lab results, to finally hear the news they had been waiting for. Jane was in a state of shock. Just hours before, they had been told by the doctor “everything looks good on my end.” She did not classify her daughter having a life changing disease as “good”. The feelings of confusion that Sarah had just woken up with returned.
“[Dr. Kennedy] had diagrams of what my intestines looked like and what they should look like,” Sarah said. “I remember feeling lost and thinking ‘what does this mean for me? Is this a serious disease?’”
With every meal, Sarah was providing the autoantibodies in her intestines with more ammunition. The bumps on her face, they learned, was a symptom of Celiac Disease, not just acne. Naturally, the solution would be to completely eliminate gluten from her diet as there was no medicine available as a cure.
‘Oh my gosh, I don’t get to eat pizza?’ Sarah worried to herself as her mother unloaded her own concerned questions on the doctor.
“The day of the endoscopy was a double edged sword,” explained Jane. “It was good to get a resolution so we knew what we were dealing with. It was also frustrating and I think also shocking to think ‘How are we going to do this going forward? How is she going to eat? How am I going to cook?’”
As she had suspected in her worst fears, Sarah walked back out the doors of the clinic with a life completely flipped on its head. One sample from her intestine had restricted how she lived for the rest of her life. Gone were the days she could eat foods without checking all of the labels first. Gone were the days she could go to a birthday party without feeling like an inconvenience by having to order in a special pizza for herself. Gone were the days she could go to a restaurant without the threat of cross-contamination on her mind.
Gone were the days Sarah would let this battle inside of her continue to rage on. She was going to end her suffering and take back control.
Sarah fired her first shots back.