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A Debilitating Disease That Is Often Unknown


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.

What is celiac disease?

Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in everyday products such as medicines, vitamins, and lip balms.

When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats.

Celiac disease is both a disease of malabsorption—meaning nutrients are not absorbed properly—and an abnormal immune reaction to gluten. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy. Celiac disease is genetic, meaning it runs in families. Sometimes the disease is triggered—or becomes active for the first time—after surgery, pregnancy, childbirth, viral infection, or severe emotional stress

What are the symptoms of celiac disease?
Symptoms of celiac disease vary from person to person. Symptoms may occur in the digestive system or in other parts of the body. Digestive symptoms are more common in infants and young children and may include:

•  abdominal bloating and pain
•  chronic diarrhea
•  vomiting
•  constipation
•  pale, foul-smelling, or fatty stool
•  weight loss
•  Irritability is another common symptom in children.

Malabsorption of nutrients during the years when nutrition is critical to a child’s normal growth and development can result in other problems such as failure to thrive in infants, delayed growth and short stature, delayed puberty, and dental enamel defects of the permanent teeth.

Adults are less likely to have digestive symptoms and may instead have one or more of the following:

•  unexplained iron-deficiency anemia
•  fatigue
•  bone or joint pain
•  arthritis
•  bone loss or osteoporosis
•  depression or anxiety
•  tingling numbness in the hands and feet
•  seizures
•  missed menstrual periods
•  infertility or recurrent miscarriage
•  canker sores inside the mouth
•  an itchy skin rash called dermatitis herpetiformis

People with celiac disease may have no symptoms but can still develop complications of the disease over time. Long-term complications include malnutrition—which can lead to anemia, osteoporosis, and miscarriage, among other problems—liver diseases, and cancers of the intestine.

Why are celiac disease symptoms so varied?
Researchers are studying the reasons celiac disease affects people differently. The length of time a person was breastfed, the age a person started eating gluten-containing foods, and the amount of gluten-containing foods one eats are three factors thought to play a role in when and how celiac disease appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear.

Symptoms also vary depending on a person’s age and the degree of damage to the small intestine. Many adults have the disease for a decade or more before they are diagnosed. The longer a person goes undiagnosed and untreated, the greater the chance of developing long-term complications.

What other health problems do people with celiac disease have?
People with celiac disease tend to have other diseases in which the immune system attacks the body’s healthy cells and tissues. The connection between celiac disease and these diseases may be genetic. They include

•  type 1 diabetes
•  autoimmune thyroid disease
•  autoimmune liver disease
•  rheumatoid arthritis
•  Addison’s disease, a condition in which the glands that produce critical hormones are damaged
•  Sjögren’s syndrome, a condition in which the glands that produce tears and saliva are destroyed

How common is celiac disease?
Celiac disease affects people in all parts of the world. Originally thought to be a rare childhood syndrome, celiac disease is now known to be a common genetic disorder. More than 2 million people in the United States have the disease, or about 1 in 133 people.1 Among people who have a first-degree relative—a parent, sibling, or child—diagnosed with celiac disease, as many as 1 in 22 people may have the disease.2

Celiac disease is also more common among people with other genetic disorders including Down syndrome and Turner syndrome, a condition that affects girls’ development.

1Fasano A, Berti I, Gerarduzzi T, et al. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States. Archives of Internal Medicine. 2003;163(3):268–292.

See also
Conditions of the oesophagus
Benefits of vegetarian diet

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