Ellen
01-04-2006, 09:33 AM
Hidden danger is coming into focus
Celiac disease was once thought rare.
By Susan FitzGerald
Inquirer Staff Writer
After Rebecca Rosen was finally diagnosed at age 5 with what was ailing her for several years, her parents placed a loaf of bread in front of her.
"This is something you can't eat ever," Rebecca, 10, recalls her parents saying. To reinforce the point, they spelled out the critical word on the bread wrapper: W-H-E-A-T.
Rebecca has celiac disease. Her digestive system can't tolerate gluten, a protein found not only in wheat but also in rye and barley. The condition, once thought unusual, is far more common than many experts realized.
Celiac disease, an autoimmune disorder, often goes unrecognized or misdiagnosed, sometimes for decades. Until recently, doctors thought the condition affected only about one in 10,000 people and was confined mostly to childhood.
But an expert panel convened in 2004 by the National Institutes of Health presented a more worrisome picture. It concluded 0.5 percent to 1 percent of Americans have celiac disease, which means as many as three million people are affected.
The overwhelming majority are unaware they have the condition, often because they don't have the textbook symptoms - diarrhea, gas, stomach pain and bloating, constipation, and weight loss or poor growth.
Most patients "have a lot of subtle things," said Anthony DiMarino, chief of gastroenterology and hepatology at Thomas Jefferson University Hospital in Philadelphia.
Alessio Fasano, director of the Center for Celiac Research at the University of Maryland School of Medicine, headed a team that did blood tests for celiac disease on more than 13,000 people and found that one in 133 people had the condition.
"It was astonishing to learn that we're surrounded by people with celiac, and we didn't see it," Fasano said.
He said it was long thought that celiac disease primarily affected people of Irish, Italian or Northern European heritage, and awareness of the disease is much greater in those countries. But he said the disease affects to varying degrees a range of ethnic groups, including people from India, the Middle East and Northern Africa.
Alice Bast, 44, had a variety of complaints - digestive problems, skin rashes, headaches, pregnancy complications and weight loss - and she bounced from specialist to specialist, 22 in all.
Finally, after five years of searching, the 23d doctor diagnosed her with celiac.
"They were all looking at the symptoms, and never looking at the underlying cause of my malady," said Bast, who is founder and executive director of the National Foundation for Celiac Awareness, based in Ambler.
She banished gluten from her diet and had dramatic results.
"Within two weeks, I felt like a new person. I couldn't believe it. My hair stopped falling out, I started to gain weight," Bast said. "I got my life back."
Her foundation received $100,000 from the NIH to develop an educational training program for doctors and patients. This year, the group will launch a nationwide public-awareness campaign on celiac disease. The group is also pushing for more celiac research in the United States, which Bast said lags behind Europe and other regions.
In celiac disease, the body's immune system goes awry and attacks itself. People are born with a genetic predisposition, but it takes an environmental trigger, such as gluten, to set it in motion, Fasano said.
Gluten, which is also found in a long list of not-so-obvious foods, triggers an immune-system response that damages the small intestine and interferes with the absorption of critical nutrients. That's why children with celiac can fail to grow properly, and people can develop unexplained anemia and thinning of the bones because they aren't absorbing enough iron or calcium.
The condition is diagnosed through blood tests, which are then followed by an endoscopy to examine and take a tiny sample from the small intestine.
In celiac disease, the villi - small, fingerlike projections in the small intestine - become shortened and flattened. The villi are involved in the absorption of nutrients into the body.
"The fascinating thing about this disease is you know what causes the damage, and you know if you take away that offending agent you will get total healing in the majority of cases," said Ritu Verma, chief of clinical gastroenterology at Children's Hospital of Philadelphia. She became an expert in celiac disease and later discovered that two of her three children have the condition.
Successfully treating celiac not only has immediate payoffs but also can prevent problems down the road, because celiac disease is associated with a greater risk for type-1 diabetes, thyroid disease, lymphoma and cancer of the small intestine, among other conditions.
Right now, the only treatment is avoiding foods with gluten, through researchers are looking for alternatives. Fasano is focusing on what's going on at the molecular level in the small intestine to trigger the hyped-up immune reaction. Others are looking at ways to break down gluten so that it wouldn't be recognizable, he said. An Australian company, Nexpep, is working on a vaccine to desensitize the immune system to gluten.
Researchers also are looking at what might prevent people from developing celiac disease. Studies have found that breast-feeding, especially as foods are introduced to babies, seems to have a protective effect.
Following a gluten-free diet isn't easy. There are the obvious gluten sources - pasta, bread, cakes, cookies - but it can be hidden in hundreds of products, such as soups, candy and salad dressings. Starting this year, foods labels will have to list eight common food allergens, including wheat. The U.S. Food and Drug Administration is also working on standards for manufacturers to label foods gluten-free.
Emily Rubin, a dietitian at Thomas Jefferson, likes to focus first on what patients can eat - fruits, vegetables, meat, potatoes and rice.
"When a patient is first diagnosed, they are sort of in denial, because it involves a change in lifestyle," she said. "It can be overwhelming at first."
Since being diagnosed in 2002, Vince Putiri, 55, of Quakertown, keeps a three-inch-thick notebook that tells whether a product contains gluten. Putiri, a union rep and marathon runner, no longer has stomach discomfort and has added healthy weight to his 6-foot frame.
Some restaurants, such as Outback Steakhouse, are offering gluten-free items. McDonald's has an online menu for customers to pinpoint gluten-free offerings.
Mr. Ritt's Bakery in South Philadelphia prides itself on being gluten-free and offers more than 200 products, including muffins, biscotti and wedding cakes. Co-owner Richard "Ritt" Gallo said demand is so strong that the business is expanding to a new site in Millville, N.J.
Rebecca Rosen, while only 10, is well-versed on what she can eat. Some chips are OK; others aren't. The same for ice cream.
On a recent evening, the family dinner in Bryn Mawr was pasta and salad. Her mother, Carole, boiled one pot of wheat pasta for husband Mark, daughter Alana, 8, and herself, and another pot of corn spaghetti for Rebecca.
"Everyone around me knows," Rebecca said. And what she's found out is that people are very nice about accommodating her dietary needs.
When she goes to a friend's house to play, there might just be a snack of chips or nachos - the very kind she can enjoy.
Celiac Disease at a Glance: Facts, Figures and Recommendations
Celiac disease is an autoimmune disorder that damages the small intestine and interferes with absorption of nutrients from food. Sufferers cannot tolerate a protein called gluten, found in wheat, rye and barley.
The disease is common, affecting up to three million Americans.
It takes an average of 11 years for celiac patients to be correctly diagnosed, because the disease is often confused with other conditions, such as irritable bowel syndrome.
Symptoms may include recurring abdominal bloating and pain, chronic diarrhea; weight loss; pale, foul-smelling stool; unexplained anemia; gas; bone pain; behavior changes; and muscle cramps.
Some people with celiac disease may have no symptoms. The undamaged part of their small intestine is able to absorb enough nutrients.
Those without symptoms are still at risk for celiac complications, including infertility, reduced bone density (both osteopenia and osteoporosis), neurological disorders, non-Hodgkin's lymphoma, and autoimmune disorders such as insulin-dependent diabetes.
To diagnose the disease, physicians test blood to measure levels of certain antibodies. If the test is positive, the physician may remove a tiny piece of tissue from the small intestine to check for damage.
The only treatment for celiac disease is to follow a gluten-free diet.
SOURCE: The National Foundation for Celiac Awareness ONLINE EXTRA For more information, visit http://go.philly.com/celiac (http://go.philly.com/celiac)
Celiac disease was once thought rare.
By Susan FitzGerald
Inquirer Staff Writer
After Rebecca Rosen was finally diagnosed at age 5 with what was ailing her for several years, her parents placed a loaf of bread in front of her.
"This is something you can't eat ever," Rebecca, 10, recalls her parents saying. To reinforce the point, they spelled out the critical word on the bread wrapper: W-H-E-A-T.
Rebecca has celiac disease. Her digestive system can't tolerate gluten, a protein found not only in wheat but also in rye and barley. The condition, once thought unusual, is far more common than many experts realized.
Celiac disease, an autoimmune disorder, often goes unrecognized or misdiagnosed, sometimes for decades. Until recently, doctors thought the condition affected only about one in 10,000 people and was confined mostly to childhood.
But an expert panel convened in 2004 by the National Institutes of Health presented a more worrisome picture. It concluded 0.5 percent to 1 percent of Americans have celiac disease, which means as many as three million people are affected.
The overwhelming majority are unaware they have the condition, often because they don't have the textbook symptoms - diarrhea, gas, stomach pain and bloating, constipation, and weight loss or poor growth.
Most patients "have a lot of subtle things," said Anthony DiMarino, chief of gastroenterology and hepatology at Thomas Jefferson University Hospital in Philadelphia.
Alessio Fasano, director of the Center for Celiac Research at the University of Maryland School of Medicine, headed a team that did blood tests for celiac disease on more than 13,000 people and found that one in 133 people had the condition.
"It was astonishing to learn that we're surrounded by people with celiac, and we didn't see it," Fasano said.
He said it was long thought that celiac disease primarily affected people of Irish, Italian or Northern European heritage, and awareness of the disease is much greater in those countries. But he said the disease affects to varying degrees a range of ethnic groups, including people from India, the Middle East and Northern Africa.
Alice Bast, 44, had a variety of complaints - digestive problems, skin rashes, headaches, pregnancy complications and weight loss - and she bounced from specialist to specialist, 22 in all.
Finally, after five years of searching, the 23d doctor diagnosed her with celiac.
"They were all looking at the symptoms, and never looking at the underlying cause of my malady," said Bast, who is founder and executive director of the National Foundation for Celiac Awareness, based in Ambler.
She banished gluten from her diet and had dramatic results.
"Within two weeks, I felt like a new person. I couldn't believe it. My hair stopped falling out, I started to gain weight," Bast said. "I got my life back."
Her foundation received $100,000 from the NIH to develop an educational training program for doctors and patients. This year, the group will launch a nationwide public-awareness campaign on celiac disease. The group is also pushing for more celiac research in the United States, which Bast said lags behind Europe and other regions.
In celiac disease, the body's immune system goes awry and attacks itself. People are born with a genetic predisposition, but it takes an environmental trigger, such as gluten, to set it in motion, Fasano said.
Gluten, which is also found in a long list of not-so-obvious foods, triggers an immune-system response that damages the small intestine and interferes with the absorption of critical nutrients. That's why children with celiac can fail to grow properly, and people can develop unexplained anemia and thinning of the bones because they aren't absorbing enough iron or calcium.
The condition is diagnosed through blood tests, which are then followed by an endoscopy to examine and take a tiny sample from the small intestine.
In celiac disease, the villi - small, fingerlike projections in the small intestine - become shortened and flattened. The villi are involved in the absorption of nutrients into the body.
"The fascinating thing about this disease is you know what causes the damage, and you know if you take away that offending agent you will get total healing in the majority of cases," said Ritu Verma, chief of clinical gastroenterology at Children's Hospital of Philadelphia. She became an expert in celiac disease and later discovered that two of her three children have the condition.
Successfully treating celiac not only has immediate payoffs but also can prevent problems down the road, because celiac disease is associated with a greater risk for type-1 diabetes, thyroid disease, lymphoma and cancer of the small intestine, among other conditions.
Right now, the only treatment is avoiding foods with gluten, through researchers are looking for alternatives. Fasano is focusing on what's going on at the molecular level in the small intestine to trigger the hyped-up immune reaction. Others are looking at ways to break down gluten so that it wouldn't be recognizable, he said. An Australian company, Nexpep, is working on a vaccine to desensitize the immune system to gluten.
Researchers also are looking at what might prevent people from developing celiac disease. Studies have found that breast-feeding, especially as foods are introduced to babies, seems to have a protective effect.
Following a gluten-free diet isn't easy. There are the obvious gluten sources - pasta, bread, cakes, cookies - but it can be hidden in hundreds of products, such as soups, candy and salad dressings. Starting this year, foods labels will have to list eight common food allergens, including wheat. The U.S. Food and Drug Administration is also working on standards for manufacturers to label foods gluten-free.
Emily Rubin, a dietitian at Thomas Jefferson, likes to focus first on what patients can eat - fruits, vegetables, meat, potatoes and rice.
"When a patient is first diagnosed, they are sort of in denial, because it involves a change in lifestyle," she said. "It can be overwhelming at first."
Since being diagnosed in 2002, Vince Putiri, 55, of Quakertown, keeps a three-inch-thick notebook that tells whether a product contains gluten. Putiri, a union rep and marathon runner, no longer has stomach discomfort and has added healthy weight to his 6-foot frame.
Some restaurants, such as Outback Steakhouse, are offering gluten-free items. McDonald's has an online menu for customers to pinpoint gluten-free offerings.
Mr. Ritt's Bakery in South Philadelphia prides itself on being gluten-free and offers more than 200 products, including muffins, biscotti and wedding cakes. Co-owner Richard "Ritt" Gallo said demand is so strong that the business is expanding to a new site in Millville, N.J.
Rebecca Rosen, while only 10, is well-versed on what she can eat. Some chips are OK; others aren't. The same for ice cream.
On a recent evening, the family dinner in Bryn Mawr was pasta and salad. Her mother, Carole, boiled one pot of wheat pasta for husband Mark, daughter Alana, 8, and herself, and another pot of corn spaghetti for Rebecca.
"Everyone around me knows," Rebecca said. And what she's found out is that people are very nice about accommodating her dietary needs.
When she goes to a friend's house to play, there might just be a snack of chips or nachos - the very kind she can enjoy.
Celiac Disease at a Glance: Facts, Figures and Recommendations
Celiac disease is an autoimmune disorder that damages the small intestine and interferes with absorption of nutrients from food. Sufferers cannot tolerate a protein called gluten, found in wheat, rye and barley.
The disease is common, affecting up to three million Americans.
It takes an average of 11 years for celiac patients to be correctly diagnosed, because the disease is often confused with other conditions, such as irritable bowel syndrome.
Symptoms may include recurring abdominal bloating and pain, chronic diarrhea; weight loss; pale, foul-smelling stool; unexplained anemia; gas; bone pain; behavior changes; and muscle cramps.
Some people with celiac disease may have no symptoms. The undamaged part of their small intestine is able to absorb enough nutrients.
Those without symptoms are still at risk for celiac complications, including infertility, reduced bone density (both osteopenia and osteoporosis), neurological disorders, non-Hodgkin's lymphoma, and autoimmune disorders such as insulin-dependent diabetes.
To diagnose the disease, physicians test blood to measure levels of certain antibodies. If the test is positive, the physician may remove a tiny piece of tissue from the small intestine to check for damage.
The only treatment for celiac disease is to follow a gluten-free diet.
SOURCE: The National Foundation for Celiac Awareness ONLINE EXTRA For more information, visit http://go.philly.com/celiac (http://go.philly.com/celiac)