The first part of her story is heartrending.
Alice Salomon Bast endured three miscarriages and delivered a stillborn child in her ninth month of pregnancy. She suffered hair loss, and her teeth became thin and fragile. She experienced extreme fatigue and gastrointestinal distress for more than a decade as one doctor after another - 22 in all - failed to decipher her symptoms.
The second part of Bast's tale is a triumph.
A veterinarian, of all people, told Bast that her symptoms sounded a bit like those of celiac disease, an autoimmune illness seen in humans as well as some dogs.
Finally. Bast was relieved to have something specific to pursue on her next doctor's visit. A simple blood test showed she did indeed have the disease, an allergy to the protein contained in wheat, rye, and barley.
Why, Bast thought, had she not heard of celiac before, and why hadn't all those doctors she had seen?
"The blood test had always been available," Bast said, sighing. She had suffered so much emotional and physical pain. "But nobody seemed to know about it."
Bast did not stop with getting relief for herself. Her struggle informed a much bigger pursuit - improving conditions for the nation's three million celiac sufferers. She started the nonprofit National Foundation for Celiac Awareness in 2003.
For her efforts in behalf of the larger community, Bast, 50, of Chestnut Hill, has been named the 2010 recipient of the prestigious Philadelphia Award. She will be presented the award, and its $25,000 prize, on May 17.
"Alice Bast is truly a role model for young people," said Susan Sherman, who chairs the board of the Philadelphia Award. "Her story is about grabbing on to an issue and persevering. She's been almost a one-man band for so long."
While other celiac organizations do vital work for patients, Bast has gone further. She was the first to create online courses giving continuing medical-education credit for primary-care physicians.
And though she does not claim to have single-handedly created the surge in public interest in gluten-free foods, Bast did convince many food-industry executives that there was a growing market for new products.
"She brought the concept of what a celiac advocacy group should be doing to a whole new level," said Daniel Leffler of the Celiac Center at Beth Israel Deaconess Medical Center at Harvard University.
Bast said she had cried when told of the award.
"You don't do these things alone," she said. "So many people have to pull together. But I'm especially grateful because we can use the power of the award to help empower others."
The ramifications of untreated celiac disease are still best known only to celiac specialists (those experts say it can lead to a cascade of autoimmune illness, osteoporosis, infertility, Type 1 diabetes, malignancies, even multiple sclerosis), but at least the words celiac and gluten-free are now in the public domain.
"She's made a difference," said Ira Brind, a friend and fellow celiac patient, "in ways many of us don't even dream about."
'I kept getting sicker'
Bast was the middle child in a brood of five, the daughter of a real estate executive and a teacher. The Salomons grew vegetables in a backyard garden at their Wayside, N.J., home and kept a goat for milking.
"We were ahead of our time, I think," said Bast, who grew up on whole grains. "My father had been to Annapolis, and he had us doing calisthenics every morning."
At the University of Pennsylvania, Bast was in a dual-degree program studying nursing and biology with the hope of becoming a neonatologist when her mother learned she had pancreatic cancer.
Eager to return home, Bast found she had enough credits to graduate a year early with a degree in sociology. She took that and left.
She went on to work in business development and marketing for medical companies, and it would be years before she would learn of a possible link between pancreatic cancer and celiac disease.
In 1988, she and her husband, Will, who works in Web content management, had their first child, Elizabeth, a healthy 8-pounder. But within a year, Bast's health started to fail.
"I lost so much weight, I thought I was dying of cancer."
Toward the end of her next pregnancy, Bast said, she knew something was wrong with the baby. The child she named Emily was 7 pounds at delivery but stillborn.
"I kept getting sicker. I had migraines, diarrhea, bloating, tingling in my fingers and toes, canker sores."
Three midterm miscarriages followed. She was down to 105 pounds on her 5-foot, 9-inch frame.
In 1993, her daughter Beatrice Linea was born nearly seven weeks premature. She was small but alive and well.
Later, Bast would learn that untreated celiac disease can lead to infertility problems.
Once she had her diagnosis, Bast set about learning what resources were in place and what was needed.
She got a $100,000 grant from the National Institutes of Health, put together a medical advisory board, and worked toward an initial goal: early diagnosis.
When celiac disease was less well-known, people with symptoms did not know to ask for the necessary blood test. Neither did their primary-care physicians.
"It is essential to reach primary-care physicians, because they are the gatekeepers of our medical system," said Ritu Verma, a pediatric gastroenterologist who heads the celiac section at Children's Hospital of Philadelphia. "They determine whether a patient sees a specialist, and in many cases they do the follow-up care after diagnosis."
Bast said, for example, that one doctor had refused to perform the simple finger-prick blood test, saying she was "too tall" to be a candidate for celiac.
Bast wanted to spread the word by getting pamphlets placed in doctors' offices, and this, too, she accomplished creatively.
She was aware that pharmaceutical firms had hundreds of salespeople visiting doctors' offices all the time, but with no pill for celiac disease, Bast knew those firms had little incentive to carry her pamphlets.
Instead, she partnered with Quest Diagnostics, a medical-testing firm, and they came on board.
Encouraging people with symptoms to get tested created the demand side of the equation. Next, Bast went after the supply side - getting more gluten-free food in markets and restaurants.
"As soon as she understood the situation, she could have gone into the business of making gluten-free foods herself, but she leveraged the marketing arms of certain key companies," said Bast's friend Dorothy Binswanger.
Anheuser-Bush approached Bast for advice before launching Redbridge, a gluten-free beer, in 2006. She worked with Whole Foods stores in the Mid-Atlantic region on their gluten-free line.
Interest in this once obscure illness has spawned a staggering array of gluten-free foods. The number of new or reformulated products went from 936 in 2006 to 2,675 in 2010. Sales grew 28 percent a year, and the market is projected to reach $5.5 billion by 2015.
In addition, there are now hundreds of gluten-free cookbooks and thousands of restaurants with gluten-free menu items. And thanks to Bast's persuasiveness, gluten-free snacks are available at every Phillies, Eagles, Sixers, and Flyers game.
Non-celiacs are going gluten-free, too, in the hope the diet will make them healthier. Doctors do not advocate this approach because it interferes with proper diagnosis, and Bast doesn't like the idea because it sends mixed messages about the seriousness of the disease.
Bast made the National Foundation for Celiac Awareness a source for training physicians and pharmacists as well as chefs and restaurateurs. Now the group is launching a GREAT Business Association, assessing membership fees ($250 to $7,500, depending on a manufacturer's annual sales) that effectively pay for the foundation's free services to patients.
Next, she hopes to persuade Wal-Mart to put lower-priced gluten-free foods on its shelves. She also is working with Rite Aid to train pharmacists because a number of medications contain gluten.
"Alice is all about giving to everybody else," Binswanger said. "She doesn't mind flying under the radar, but it's exciting to see her get this recognition."
About the Award
The Philadelphia Award was founded in 1921 by Edmund W. Bok to honor those who act in service "to the best and largest interest of the community in which Philadelphia is the center." Bok, a writer, editor, community activist, and philanthropist, is perhaps best known as editor of the Ladies Home Journal.
2009: Joan Myers Brown
2008: H. Fitzgerald "Gerry" and Marguerite Lenfest
2007: Marciene Mattleman
2006: Leonore Annenberg
2005: Paul R. Levy
2004: Gloria Guard
2003: Judith Rodin
2002: Lorene Cary
2001: Bernard C. Watson
2000: Ernesta D. Ballard
A Celiac Disease Primer
What is celiac disease?
Celiac disease is an autoimmune disorder triggered by consuming a protein called gluten, which is found in wheat, barley, and rye. When a person with celiac disease eats gluten, it interferes with the absorption of nutrients from food by damaging the villi that line the small intestine. This leads to malnutrition and a host of other problems, including some cancers, thyroid disease, osteoporosis, infertility, and the onset of other autoimmune diseases.
Who gets celiac disease?
One of every 133 Americans has celiac disease, but it is undiagnosed or misdiagnosed in 95 percent of them.
The disease cuts across all races, ages, and genders.
Celiac disease is a genetic disorder. Roughly 40 percent of people carry a gene for celiac disease but present no symptoms.
In some cases, stressful events such as a pregnancy, surgery, infection, or severe emotional distress can trigger the disease.
How is it diagnosed?
A physician can screen for celiac disease using a simple antibody blood test.
How is it treated?
A lifelong gluten-free diet is the only treatment available. No medication or surgery can cure the disease. Eating any amount of gluten, no matter how small, can damage the villi of the small intestine.
Is celiac a serious national health problem?
Once it was considered rare. But in 2004, the National Institutes of Health recognized celiac disease as a serious problem affecting as many as three million Americans. The panel recommended adoption of standardized definitions and testing for gluten-free food.
SOURCE: National Foundation for Celiac Awareness