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Aug/Sep 2010 Issue
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Celiac Disease, By Accident
Can this genetic condition be triggered by trauma?
In July 2007, Emily Eland and her two best friends, Jack and Carli, took two jet-skis out on the Columbia River to watch the sunset. As Emily, then 15, sped ahead on her jet-ski, Jack and Carli followed closely behind on theirs. When she slowed to a stop, having found a great spot to view the dipping sun, Jack failed to see her. What happened next would change Emily’s life.
“I was t-boned by their jet-ski going 30 mph,” she reports matter-of-factly.
Jack and Carli escaped serious injury but the impact launched Emily off her jet-ski. She landed 30 feet away—her femur severed and left leg hanging on by a strip of hamstring. She was life-flighted to the trauma center in Portland, where over the next 14 days, she underwent four surgeries to repair her badly broken femur and reconstruct torn muscles. A titanium rod was inserted inside her femur, through her bone marrow, with screws placed at her hip and knee. Because the trauma was so extensive, doctors had to repeatedly re-enter her wound to surgically remove dead tissue.
After two and a half weeks, Emily was released from the hospital, weak but excited to go home. Just two days later, however, a blood clot in her calf forced her back in the hospital. The clot took three months to dissipate. In the ensuing months, Emily underwent three hours of grueling physical therapy almost every day. She was determined to start her first day of her junior year of high school on her own two feet, not on crutches. Miraculously, she did it.
About three months after the accident, Emily began suffering from terrible stomachaches.
“They seemed to start around 6:00 o’clock every night,” says Emily’s mom, Sheila Fitzgerald of Bend, Oregon. The pain was so intense that Emily struggled to eat dinner most nights, wanting instead just to go to bed.
“I was so tired and my stomach hurt so much I had to lie down all the time. I missed a lot of school that fall,” says Emily.
Her family doctor examined Emily and suggested, among other possibilities, that an allergy flare up could be the culprit. Emily had previously been diagnosed with allergies to grass and hay.
But before long it wasn’t just stomachaches and fatigue. Emily’s hair was falling out in huge clumps. “I was also losing lots of weight. It was really scary. I had no idea what was happening to me,” recalls Emily.
Sheila was concerned, too. “She’s a beautiful girl but she was suddenly ghostly looking. She lost all of her coloring almost overnight.”
Emily’s orthopedic specialist, who had been coordinating most of her recovery and physical therapy, suggested Emily could have post traumatic stress syndrome (PTSD). “While PTSD seemed more likely than an allergy flare, my maternal instincts said that wasn’t the problem either,” says Sheila.
Emily agreed. “I felt traumatized right after the accident, but I was no longer sad or depressed about it. I was moving on from the accident. Suddenly I was really sick in a weird way. I didn’t think that PTSD could explain my symptoms.”
Concerned about her granddaughter’s declining health, Emily’s grandmother sent Sheila a newspaper clipping about celiac disease. The short six-line health brief suggested a link between the condition and severe trauma.
For the first time since the mysterious symptoms started, Sheila thought they were on to something. Armed with the article, Sheila took Emily to their family doctor the following Monday morning to be tested for celiac disease. He initially balked at the request, saying he didn’t think it could be celiac disease. But Sheila was insistent and the doctor eventually agreed to run a celiac panel.
A week later, Sheila got a phone call on a Sunday evening. It was Emily’s doctor. “He was in disbelief about the test results,” remembers Sheila. “The numbers were off the charts.” Later that week, a gastroenterologist performed an endoscopic biopsy and quickly confirmed the diagnosis—Emily had celiac disease.
Within days of starting the gluten-free diet, Emily felt tremendously better. “Before long, my hair got a lot healthier and I didn’t look so pale,” says Emily. “I finally felt like I was recovering from everything that had happened that summer and fall. The celiac diagnosis was the final part of that whole experience for me.”
An Uncertain Link
Although the timing of Emily’s accident and her celiac diagnosis point to a connection, the two may not be related.
“It’s not clear that trauma actually causes celiac disease,” says Peter H.R. Green, MD, director of the Celiac Disease Center at Columbia University. There have been anecdotal reports, such as the newspaper article Emily’s grandmother found, but no solid evidence to support an association.
The difficulty is that we don’t know precisely when celiac disease starts, Green notes. We may know when symptoms started but that doesn’t necessarily mean that’s when the disease started.
For many celiacs, symptoms don’t kick in until there already is significant intestinal damage. But others may never develop symptoms. In fact, up to two-thirds of celiacs may be asymptomatic, according to Stefano Guandalini, MD, medical director of The University of Chicago Celiac Disease Center. People with symptomatic celiac disease represent just “the tip of the celiac iceberg,” he says.
“Asymptomatic celiacs often seek medical treatment for something else,” says Carol Shilson, executive director of The University of Chicago Celiac Disease Center. “An accident or other illness tends to bring them to the attention of the medical community. It’s at that point that celiac disease may be exposed.”
“Trauma may lead to a diagnosis of celiac disease but not to the disease itself,” explains Green.
A traumatic accident brought Shilson’s own undiagnosed celiac disease to light. In 2003, she was involved in a serious car accident. She was approaching an intersection when someone made a left turn through the intersection, hitting her. Fortunately, neither Shilson nor the other driver was seriously injured but Shilson’s car was totaled. In the months following the accident, Shilson began noticing gastrointestinal problems. Trying to pinpoint a cause, she reviewed what had changed in her life recently—the accident stuck out. When she was finally diagnosed with celiac disease several months later, she wondered if the accident had anything to do with it. Shilson asked her doctor if there was any connection. “I was told it was probably a coincidence. Most likely I had celiac much longer than just the few months since the accident.”
Although celiac experts have yet to support a link between trauma and celiac onset, Stefano Guandalini won’t rule it out entirely. “Trauma can cause major stress to the body. That stress could be a relevant piece somewhere on the pathway to developing celiac disease or celiac symptoms,” he says. “There’s still a lot to learn about this disease.”
As with all autoimmune diseases, celiac disease is thought to involve a complex interaction of genetic and environmental (or outside) factors. So far, two genetic markers, HLA-DQ2 and HLA-DQ8, have been implicated in the condition. The key environmental factor, gluten, has also been identified. But it appears there’s more to celiac disease than gluten and genes. The two genetic markers are relatively common in the general population and gluten is ubiquitous in today’s diet, yet just 1 percent of Americans have the condition. As researchers continue to look for other genes, they also hope to pinpoint additional factors important to disease onset.
One such factor may be infection. Over the years, infections have been studied in connection with the onset of a variety of autoimmune conditions, including Type 1 diabetes and rheumatoid arthritis. When a report in the medical literature noted the symptomatic onset of celiac disease following a confirmed case of Campylobacter jejuni enteritis (traveler's diarrhea), it was among the first to suggest that an environmental factor other than gluten—in this case, an infection—could be important to the onset of symptomatic celiac disease.
Recently, a large study of children with the genetic markers for celiac disease linked repeated rotavirus infections, one of the most common causes of diarrhea in children, with an increased risk of developing celiac disease later in life.
Just how an infection might precipitate celiac disease or celiac symptoms is unclear, however. One theory is that repeated infections chronically stimulate the immune system, which may, in turn, trigger an autoimmune reaction in genetically susceptible people.
Others hypothesize that a mechanism known as molecular mimicry is to blame. Here, a foreign protein, such as an infectious bacteria or virus, tricks the body into attacking its own cells that have similar enough characteristics to the bacteria or virus. Molecular mimicry has been suggested in connection with the onset of multiple sclerosis, another autoimmune condition.
Still others posit that infections—in particular gastrointestinal ones—may alter intestinal permeability, allowing gluten proteins to slip past the protective intestinal barriers and mingle with the immune system.
A serious gastrointestinal infection when Shilson was in the third grade may have set off her celiac disease, some 20 years prior to her car accident and diagnosis. “When my doctor and I looked back at my medical records and various symptoms over the years, he suspected that early infection could have been the start of celiac disease for me,” Shilson says.
Altered intestinal permeability is a leading explanation behind another factor that may be involved in the onset of celiac disease—abdominal surgery.
There is evidence that abdominal surgery can cause major changes in intestinal permeability, says Guandalini. A sudden increase in permeability could be a trigger for celiac disease in genetically predisposed individuals. One study reported the onset of symptomatic celiac disease following upper digestive tract surgery in a small sample of adult patients.
Although Emily had four surgeries following her accident, none were abdominal surgeries, says her mom. They were all on her left leg.
Yet another important factor may be pregnancy. Guandalini says pregnancy has been reported in connection with the onset of symptomatic celiac disease. It’s thought that the demands of nourishing a growing fetus, in combination with hormonal and other immune system changes, may stress the body and, in genetically predisposed women, activate symptoms.
With each of the potential environmental factors—infection, surgery and pregnancy—major stress to the body and immune system is a common theme.
Patients point to stress as well. In 2002, more than 2,600 adults with biopsy-proven celiac disease completed a questionnaire (the Canadian Celiac Survey), which included questions on possible triggers that occurred within six months prior to the onset of their clinical symptoms. More than 23 percent of respondents identified severe stress. (The specific nature of the stress, such as trauma, was not described.) Nine percent reported a severe gastrointestinal infection, 8 percent had a pregnancy and 7 percent had major surgery.
Researchers at a number of institutions, including The University of Chicago Celiac Disease Center, The Celiac Disease Center at Columbia University, The Mayo Clinic, and Stanford University, are studying what turns on celiac disease in genetically predisposed individuals.
Recently, a team at The University of Chicago Celiac Disease Center developed the world's first mouse model of celiac disease. This gives researchers a better tool to study possible triggers. It’s also hoped that the model will unlock the key to a vaccine and perhaps even a cure to the disease, Shilson says. The Center has undertaken a $2 million campaign to fund the research.
Even if the jet-ski accident didn’t directly cause Emily’s celiac disease, the two events will always be linked for her and her mother.
“The accident was so traumatic that I thought it would permanently change her and affect the rest of her life,” says Sheila. “While her friends were windsurfing or horseback riding competitively all over the state, Emily was learning how to use her leg again. Then she had to cut gluten out of her diet. But she never complained. She just moved on. I’m very proud of her.”
Emily’s immediate family members have since been checked for celiac disease—all tested negative.
Now three years after the accident, Emily is thriving. Today, she’s an active freshman at Oregon State University where she lives in a dorm, eats in the dining hall and keeps a well-stocked, gluten-free mini-fridge in her room as back-up.
Although living with celiac disease at college is an inconvenience—Emily would love to eat pizza with friends in the dining hall or at the sorority she recently joined—it’s not so bad, she says. She’s grateful to be feeling so healthy these days. Plus, she’s doing well academically and just declared business as her major. When asked if she feels any limitations in her life, she struggles to think of any. “Maybe running” she says, after
pondering hard. “I can’t run more than a block or two without pain, but I manage to stay fit with plenty of other fun activities, including horseback riding.”
“Not much stops her,” says Sheila. “The accident showed that—and celiac disease proved it.”