(CNSNews.com) – Medical experts cannot confirm Kalyn Keller’s belief that her diagnosis of Crohn’s disease is connected to her swimming in the waters off the coast of Brazil in the 2007 Pan American Games. But when the International Olympic Committee announced it had picked Rio de Janeiro as the host city for the 2016 summer Olympic Games, Keller said she was devastated.
“It was kind of just like everything happening again,” Keller, 24, told CNSNews.com as she fought back tears. “I don’t want this to happen to anyone else.”
What can be confirmed, however, is that the bodies of water Olympic athletes like Keller swim in for open-water competitions around the globe are not tested, according to Lindsay Mintenko, national team managing director for USA Swimming, the U.S. Olympic body in charge of swimmers.
Mintenko told CNSNews.com that there are no rules mandating the testing of open water, which would be established by the Federation Internationale de Natation (FINA), the organization that regulates Olympic and Olympic-related swimming events.
Mintenko said USA Swimming is lobbying for that to change, although FINA only reviews its regulations every four years and no water-testing regulation for open-water competitions were put into place during the latest session.
“It didn’t pass this year,” Mintenko said, adding that efforts to gain passage continue.
“A lot of our medical doctors who work in open water, who work with this every day, to try to come up with a good test that can be used that’s accurate, that’s quick, that’s effective, all those things,” Mintenko said.
Keller, meanwhile, was forced to retire from a world-class swimming career that began at age 14 and included competing in the 2004 Olympic Games in Athens and earning a silver medal in the women’s 25k open water race at the 2007 world championship competition in Melbourne, Australia.
She was on the fast track to the 2008 Beijing Olympics where the open-swim event would make its Olympic debut when she took part in the Pan American Games in 2007 in Brazil. Not long after competing in the open-swim competition off of Copacabana Beach, Keller developed flu-like symptoms and failed to make the cut in the Olympic trials in Florida later that year.
Keller said her diagnosis as having Crohn’s disease not only ended her career, but changed her life. She lost the insurance she had as a U.S. athlete and could not get coverage elsewhere.
“It completely ripped my life out from under my feet,” Keller said. “I had a big plan of going to the Olympics and all of a sudden I went from athlete to invalid.”
Medical experts, however, have yet to determine what causes Crohn’s disease and are only now beginning to conclude that genetics play a significant role in who gets the disorder, which causes inflammation of the gastrointestinal tract and causes cramping, diarrhea and can cause other serious side effects.
Dr. Jeffrey A. Katz, gastroenterologist and associate professor at Case Western Reserve University School of Medicine in Cleveland, Ohio, said it would be difficult to connect swimming in contaminated water with the contraction of Crohn’s disease.
“I think it’s sort of an interesting association but probably doesn’t do justice to how we think about the disease and what causes it,” Katz told CNSNews.com. “The way that I think about the illness is that in order to get the disease you have to have the right sets of genes.”
“So you have to have a genetic predisposition to the illness,” Katz said. “So you have to have a certain combination of different genes, some of which are known, most of which aren’t known.”
“Crohn’s disease is generally thought to be a disease where genetics play a major role and the genetics of the disease are such that they will cause an individual to be potentially sensitive to their own bacteria that we all have in our bodies,” Dr. Stephan R. Targan, director of gastroenterology and inflammatory disease at Cedar Sinai Medical Center in Los Angeles told CNSNews.com.
But the right set of genes doesn’t guarantee you’ll get Crohn’s disease, according to experts.
“Having that is not enough,” Katz said “You can have those genes and never get the illness. At some point there has to be some sort of trigger that starts the disease going. And we don’t really understand the trigger in most people.”
That trigger could be a flu virus or another infection that affects the gastrointestinal track. It is even possible, Katz said, that something in water could trigger the disease, but that it would be difficult to determine conclusively in Keller’s case.
“If you knew that the water was high in a certain kind of bacteria that can cause diarrhea, and that this patient got tested for those bacteria and they were found in her, then you could make a strong case,” Katz said. “But I think it’s one of those true, unrelated scenarios here. Most likely something happened during the Olympics that was the trigger, but saying that it was the swim is, to me, very difficult.”
Katz said it just as easily could have been a virus she caught by staying in close quarters with other athletes or a change in diet that occurs when one travels to other countries and cultures.
Keller said her family does not have a history of Crohn’s disease, but experts said that cannot rule out a genetic pre-disposition.
“It’s possible that neither of her parents nor any of her cousins would have it,” Targan said. “Her two parents when they came together and the genes she inherited could have come together in her to make her susceptible.”
Keller said her experience in Brazil during the Pan American games was also marred by other things, including no hot water in the accommodations where athletes stayed and high crime rates that kept visiting athletes off the streets after dark.
Keller said she worries about the Olympic athletes who will be competing in Rio de Janeiro and other sites around Brazil in 2016 and that she hopes no one suffers her fate.
“Who is out there speaking about the safety of these athletes in South America?” Keller said. “I would have no problem with it if I knew [Rio de Janeiro] was safe, but it’s not."