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A Debilitating Disease That Is Often Unknown
Friday, October 10th, 2008
nytimes
Mimi Winsberg never knew that the energy bars and pasta that sustained her during endurance training were also making her ill. She had completed dozens of triathlons and marathons, but four years ago, when she was in her late 30s, her health and athletic performances rapidly and inexplicably spiraled downward.
Winsberg, a psychiatrist in San Francisco, said she and a string of physicians had attributed her slower times and overwhelming fatigue to aging, new motherhood and chronic anemia. She began to follow an iron-rich diet, took iron supplements and received iron intravenously. Still, her health continued to deteriorate.
When a physician friend convinced Winsberg that her body was not absorbing the iron, she researched the problem online. She read about the symptoms of celiac disease, a genetic auto-immune disorder caused by eating the gluten protein in wheat and other grains like barley, rye and oats.
Winsberg said her first thought was, “This is what has been happening to me my whole life, and I just never put it all together before.”
Ingesting even small quantities of gluten causes the immune system to attack the lining of the small intestine in celiacs, hampering the absorption of vital nutrients like iron, calcium and fat. Untreated, it can lead to a wide range of problems including anemia, infertility, osteoporosis and cancer.
“Celiac is grossly underdiagnosed in this country,” said Dr. Peter H. R. Green, a professor at the College of Physicians and Surgeons at Columbia and director of the university’s Celiac Disease Center. He said that at least 1 percent of the population had the disease but that only a fraction of the cases were diagnosed.
The only known treatment is a gluten-free diet. Winsberg began reading labels vigilantly and avoiding everything containing gluten, including cereal, bread and beer as well as many seasonings, food additives and nonfood items like some vitamins and toothpastes.
“You can’t even take a sip from someone else’s water bottle, because they might have been eating a Powerbar and left a trace of it on the spout,” she said.
Within days, Winsberg’s chronic gastrointestinal problems abated. Gradually her energy, weight, iron stores and oxygen-carrying hemoglobin levels rebounded.
“It was like doping,” Winsberg, 42, said. “Suddenly I was running six-minute miles instead of nine-minute miles. Before I had placed in the bottom third in triathlons. Four weeks gluten free, and I placed second in a triathlon. It was like reverse aging. I went from feeling 38 to 28 to 18.”
Winsberg’s transformation did not surprise Dr. John Reasoner, a medical director with the United States Olympic Committee.
“In six to eight weeks, if they’ve followed the diet, it’s night and day,” he said.
Reasoner said that symptoms of celiac disease were often subtle but came at a high cost for athletes who expected maximum performance. Dave Hahn, who has reached the Mount Everest summit 10 times, said he found he had the disease after he became “inexplicably weak” on his second trip to the peak in 1999.
Hahn was the climbing leader on a search expedition for the remains of the Everest pioneer George Mallory, who had disappeared on the mountain in 1924. The search was successful, but Hahn struggled. Then 37, he had become anemic. Perilously weak and short of breath on summit day, he had to depend on his climbing partner to make it off the summit alive.
“It was a huge source of shame which made me feel like I had to get to the bottom of the health problems that I’d been ignoring for so long,” Hahn said.
He returned to the doctor he had seen eight years before for chronic gastrointestinal problems, common in celiacs, and this time she diagnosed the disease.
Hahn said he had difficulty adjusting to the gluten-free diet.
“I got stronger again without question, and you don’t really expect that in your late 30s,” he said. “I had gotten to the point up high and in the cold where I completely ran out of gas.”
Hahn, now 46, continues to guide high-altitude expeditions all over the world.
“I could have lived out my life without knowing I have celiac,” Hahn said. “But I wouldn’t have lived the best part of my life.”
Green said that most doctors had a limited understanding of celiac and often believed it was a childhood disease that people outgrew.
“I get calls from gastroenterologists, specialists in the field, and they don’t even know how to diagnose the disease,” he said.
Celiac disease is diagnosed through an inexpensive panel of blood tests.
Green said the current “lack of pharmaceutical backing for the disease” — the fact that it is controlled by diet, not drugs — was behind the scant research, medical education and public awareness. Doctors frequently miss the pattern within telltale symptoms of celiac, as happened to Winsberg and Hahn, Green said.
Winsberg reached a peak in her athletic career this summer. She qualified for the Ironman World Championship Triathlon to be contested on Saturday in Hawaii. She will compete in the 2.4-mile ocean swim, the 112-mile bike ride across volcanic desert and the 26.2-mile coastal run — a prestigious event she could not have dreamed of racing before her self-diagnosis.
nytimes
Mimi Winsberg never knew that the energy bars and pasta that sustained her during endurance training were also making her ill. She had completed dozens of triathlons and marathons, but four years ago, when she was in her late 30s, her health and athletic performances rapidly and inexplicably spiraled downward.
Winsberg, a psychiatrist in San Francisco, said she and a string of physicians had attributed her slower times and overwhelming fatigue to aging, new motherhood and chronic anemia. She began to follow an iron-rich diet, took iron supplements and received iron intravenously. Still, her health continued to deteriorate.
When a physician friend convinced Winsberg that her body was not absorbing the iron, she researched the problem online. She read about the symptoms of celiac disease, a genetic auto-immune disorder caused by eating the gluten protein in wheat and other grains like barley, rye and oats.
Winsberg said her first thought was, “This is what has been happening to me my whole life, and I just never put it all together before.”
Ingesting even small quantities of gluten causes the immune system to attack the lining of the small intestine in celiacs, hampering the absorption of vital nutrients like iron, calcium and fat. Untreated, it can lead to a wide range of problems including anemia, infertility, osteoporosis and cancer.
“Celiac is grossly underdiagnosed in this country,” said Dr. Peter H. R. Green, a professor at the College of Physicians and Surgeons at Columbia and director of the university’s Celiac Disease Center. He said that at least 1 percent of the population had the disease but that only a fraction of the cases were diagnosed.
The only known treatment is a gluten-free diet. Winsberg began reading labels vigilantly and avoiding everything containing gluten, including cereal, bread and beer as well as many seasonings, food additives and nonfood items like some vitamins and toothpastes.
“You can’t even take a sip from someone else’s water bottle, because they might have been eating a Powerbar and left a trace of it on the spout,” she said.
Within days, Winsberg’s chronic gastrointestinal problems abated. Gradually her energy, weight, iron stores and oxygen-carrying hemoglobin levels rebounded.
“It was like doping,” Winsberg, 42, said. “Suddenly I was running six-minute miles instead of nine-minute miles. Before I had placed in the bottom third in triathlons. Four weeks gluten free, and I placed second in a triathlon. It was like reverse aging. I went from feeling 38 to 28 to 18.”
Winsberg’s transformation did not surprise Dr. John Reasoner, a medical director with the United States Olympic Committee.
“In six to eight weeks, if they’ve followed the diet, it’s night and day,” he said.
Reasoner said that symptoms of celiac disease were often subtle but came at a high cost for athletes who expected maximum performance. Dave Hahn, who has reached the Mount Everest summit 10 times, said he found he had the disease after he became “inexplicably weak” on his second trip to the peak in 1999.
Hahn was the climbing leader on a search expedition for the remains of the Everest pioneer George Mallory, who had disappeared on the mountain in 1924. The search was successful, but Hahn struggled. Then 37, he had become anemic. Perilously weak and short of breath on summit day, he had to depend on his climbing partner to make it off the summit alive.
“It was a huge source of shame which made me feel like I had to get to the bottom of the health problems that I’d been ignoring for so long,” Hahn said.
He returned to the doctor he had seen eight years before for chronic gastrointestinal problems, common in celiacs, and this time she diagnosed the disease.
Hahn said he had difficulty adjusting to the gluten-free diet.
“I got stronger again without question, and you don’t really expect that in your late 30s,” he said. “I had gotten to the point up high and in the cold where I completely ran out of gas.”
Hahn, now 46, continues to guide high-altitude expeditions all over the world.
“I could have lived out my life without knowing I have celiac,” Hahn said. “But I wouldn’t have lived the best part of my life.”
Green said that most doctors had a limited understanding of celiac and often believed it was a childhood disease that people outgrew.
“I get calls from gastroenterologists, specialists in the field, and they don’t even know how to diagnose the disease,” he said.
Celiac disease is diagnosed through an inexpensive panel of blood tests.
Green said the current “lack of pharmaceutical backing for the disease” — the fact that it is controlled by diet, not drugs — was behind the scant research, medical education and public awareness. Doctors frequently miss the pattern within telltale symptoms of celiac, as happened to Winsberg and Hahn, Green said.
Winsberg reached a peak in her athletic career this summer. She qualified for the Ironman World Championship Triathlon to be contested on Saturday in Hawaii. She will compete in the 2.4-mile ocean swim, the 112-mile bike ride across volcanic desert and the 26.2-mile coastal run — a prestigious event she could not have dreamed of racing before her self-diagnosis.
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