Alice Bast wants to teach you all about celiac disease

ALICE BAST thought she was dying.

Her hair was falling out. Her teeth were filled with cavities. She had horrible migraines. Her digestive problems were so bad she was afraid to be far from a bathroom. Her weight dropped to 100 pounds on her 5-foot-9 frame.

She had three miscarriages and a full-term stillbirth. Her youngest daughter was born through emergency Caesarean section and weighed just two pounds.

Because her mother had died of pancreatic cancer at age 52, Bast was convinced she had cancer. But doctor after doctor - 22 in all - told her there was nothing wrong with her.

"I had every screening done under the sun," Bast said. "You think I spent my time thinking about work? No, I spent my time thinking about where my cancer was and how are they going to find it. Meanwhile they're saying, 'You look fine. It's all in your head.' "

Bast's husband, Will, watched helplessly as his wife suffered. "They told her she was crazy and they sent her into psych evaluations," he said.

The puzzle was finally solved when a veterinarian friend told Bast that some animals have trouble digesting grains and people can have the same problem. Maybe she should get tested?

"I was like, 'Here's my arm! Give me the blood test,' " Bast said. That test revealed celiac disease and gave Bast the key to recovery. It also gave her a mission in life.

Bast receives this year's Philadelphia Award for her work with the National Foundation for Celiac Awareness (NFCA), an organization she founded in 2003. Flyers and 76ers owner Ed Snider, who also suffers from celiac disease, will introduce her at tonight's ceremony at the College of Physicians of Philadelphia.

Celiac is an autoimmune disease that afflicts about one in every 133 Americans. But an estimated 95 percent of people who have the disease are either undiagnosed or misdiagnosed.

The disease is activated by the protein gluten, which is found in foods containing wheat, rye or barley, and its symptoms are wide-ranging - fatigue, bloating and gas, canker sores and joint pain. Because symptoms can vary from patient to patient, diagnosis can be difficult.

The treatment, on the other hand, sounds simple: Eliminate foods containing gluten. But the protein hides in mysterious places, not just the obvious breads and pastas, but in sources as random as soy sauce, salad dressings, Communion wafers and even some toothpastes and lip balms.

Bast said her diagnosis was the best day of her life. "Most patients who don't suffer like this, they have this psychological 'How am I going to live this way?' But for me? I was like, 'I'll do it!' I just wanted to live."

Just talking with Bast, 50, can be exhausting. She talks fast, starts and stops sentences midstream not because she's unfocused but because there's a million things to say and only 24 hours in the day to say them. She's the ultimate Type A personality and for celiac sufferers, that's a good thing.

"She's an Energizer bunny is what she is," said her husband.

The Philadelphia Award, created in 1921, is presented to a person who has done something on behalf of the community within the last year, according to Susan Sherman, award committee chairwoman.

In 2010, Bast and her foundation created continuing medical education courses to make primary-care physicians more aware of celiac symptoms. She worked with members of the food-service industry to convince them that the gluten-free food market can be profitable. She's the reason you can get gluten-free snacks at the Eagles, Sixers, Flyers and Phillies' games, and why one company hopes to introduce a gluten-free pizza into public schools in September.

Bast has kept her focus on Philadelphia, which is why so many area hospitals - Jefferson, Children's and Paoli, for example - have celiac centers. "We wanted Philadelphia to be the No. 1 gluten-free neighborhood in the country," she said. "Why should we be the city just meant for hoagies?"

"Alice has done something in her field and in her work that had not been done before," Sherman said. "She's a vital force. She's got more energy than anyone I've ever met."

And her energy is contagious.

"She makes connections easily," said Nancy Ginter, NFCA director of operations, who added that she didn't know how to spell celiac, let alone define it, before meeting Bast at a nonprofit certification program at the University of Pennsylvania.

"I used to say, if you're standing next to Alice in the grocery line, you're going to learn about celiac disease. And if you're there for 10 minutes, you're going to volunteer."

Bast was always interested in science, but she worked on the business side of medicine for most of her pre-Foundation career. Her battle with celiac began in 1988, the year after her first daughter, Elizabeth, was born at a healthy eight pounds.

Bast went to Mexico and caught a parasite, which required her to go on medication. An estimated 40 percent of Americans have the celiac gene, but only about 2 percent show symptoms. Sometimes those symptoms can be triggered by an environmental cause, but Bast isn't sure if her trigger was the parasite or the medication she took to treat it.

Questions like this fuel Bast's desire to raise research funds. Because celiac is treated with dietary change, pharmaceutical companies are reluctant to spend money researching it, since they won't likely be able to profit from it.

"The challenge of funding was from a commercial viewpoint. There are no products that are going to be a cure for celiac," said Jack Wyszomierski, former chairman of the NFCA board. "It was also difficult to raise money from individuals because it's not viewed as a particularly serious disease, which it can be."

Bast wants the best and brightest of the medical profession to take celiac on, but without increased funding, the smartest people are likely to gravitate toward other diseases. The doctor who found the two genes that cause celiac switched to studying Crohn's disease and colitis because there was more money there to propel his work.

Bast founded NFCA in 2003, after her father (a nonsmoker) died of lung cancer. "I saw the chemotherapy and the radiation and all that treatment, and I thought we put so much money into treating disease and we have a prevention [for celiac] here," Bast said. "We have a treatment here and no one knows about it."

Bast sought and won a $100,000 grant from the National Institute of Health, which doesn't usually give money to people without M.D. or Ph.D. attached to their names. It was the first grant proposal she ever wrote.

The reward for all her hard work, Bast said, is in the people who can rise above their disease.

"If you're feeling better, that's what life's about. It's what makes you be effective as you can possibly be," Bast said. "I love it when the kids come up to me in the stadiums and hug my legs and say, 'I'm eating a gluten-free hot dog!' I love the faces, the little kids that can live their lives and be healthy. Those are the things that make me happy."

To donate to the National Foundation of Celiac Awareness, go to celiaccentral.org/donate.