Celiac Disease

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.

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.

When, after months of tests, doctors finally concluded it was celiac disease that was causing Alice Bast to lose weight, her hair, and her general health, they told her this way: "The good news is we know what's wrong with you. The bad news is you have to go on a diet and you can never eat out again. " Celiac is a digestive disease triggered by the consumption of gluten, which is found in foods that contain wheat, rye, and barley. That means traditional pastas, breads and baked goods are out, as are unexpected items that contain gluten like soy sauce, some soups, and pasta sauces.

As her 15-month-old son, Tyler, laid on an operating table at Children's Hospital of Philadelphia in April 1997, Wendy Wark waited in the hallway for news. In many ways, her mourning had already begun. Two days earlier, doctors there discovered what looked like a fingerlike, cancerous mass invading Tyler's abdomen. The surgery was designed to get a closer look - and to install chemotherapy ports he would desperately need as he battled the killer. But when a doctor emerged from the operating room that day, Wark couldn't believe her ears.

Last Sunday's article about a woman's courageous battle with celiac disease was remarkable ("Alice Salomon Bast wins Philadelphia Award for celiac work"). Bast's dedication is inspiring, but poses an interesting question: Given that celiac disease is so common, why has the life-sciences industry not developed viable treatment options? The reason, of course, is the connection between investing in innovation and the risks inherent in drug development. Significant development costs and the time it takes to market often drive corporate decisions and limit innovation.

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.

The camera pans across piles of oat, millet, and rice flour and an invitation to a "food allergy party. " The soundtrack swells with the Les Miserables show tune "One Day More," which gets a hypoallergenic rendering as "One Grain More," showing heartbreak in the kitchen - and the bathroom. Then four miserable French chefs try to whip up confections with no allergens. Inspired by his own diagnosis of food allergies, Wynnewood-based musical theater actor-writer Michael Bihovsky has made a music video showing the burden of living with food allergies in a gluttonous, gluten-heavy society.

Celiac disease Thank you for the excellent Page-One story, "Hidden danger is coming into focus" (Jan. 3). This article accomplished double duty. First, it informed thousands of people, including patients and their physicians, about the nature of celiac disease and the reality that it is not rare but actually affects about 1 percent of the population. That means doctors will consider the diagnosis and help patients narrow down the cause of their continuing illness. Second, it will benefit those already diagnosed as more and more people, including those who prepare food in public eateries, become aware of celiac disease.

An upgrade to the food choices on Ocean City's deep-fried boardwalk is long overdue, so the new Pure Tacos stand from former Manhattan lawyer Ted Schroeder is worth rooting for. Inspired to create a flavorful gluten-free option due to his celiac disease, Schroeder has borrowed in equal parts from New York's hot taco trucks and quick-serve Mexican chains such as Chipotle Grill, with corn tortillas as a canvas for your choice of meats. The early-season service was rough, with a slow turnaround and a confused counter guy taking orders on a paper towel.

Leonard Swidler is professor of Catholic thought and interreligious dialogue at Temple University Recently a conflict has arisen in the Catholic Church over whether people with celiac disease - people whose health requires that they avoid gluten-containing substances (e.g., wheat) - can properly expect to receive eucharistic hosts made from non-gluten- containing substances (e.g., corn). A new Vatican decree, Redemptionis sacramentum, issued by Cardinal Joseph Ratzinger's all-powerful Congregation for the Doctrine of the Faith, says they cannot.

The camera pans across piles of oat, millet, and rice flour and an invitation to a "food allergy party. " The soundtrack swells with the Les Miserables show tune "One Day More," which gets a hypoallergenic rendering as "One Grain More," showing heartbreak in the kitchen - and the bathroom. Then four miserable French chefs try to whip up confections with no allergens. Inspired by his own diagnosis of food allergies, Wynnewood-based musical theater actor-writer Michael Bihovsky has made a music video showing the burden of living with food allergies in a gluttonous, gluten-heavy society.

Peter McAndrews, arguably Philadelphia's Sandwich King, is doing something sacrilegious by sandwich standards: At Paesano's, his fantastic Philadelphia shops, he is serving select sandwiches on gluten-free bread. Seriously. The same bread that is more often compared to hockey pucks than haute cuisine. But McAndrews isn't making concessions. He's using the fresh-baked products from Toté Bakery, a gluten-free bread bakery - a rarity in the region - which opened in the Italian Market a few months ago. "Gluten-free stuff is always horrible," says McAndrews, whose customers often request the alternative bread because they suffer from celiac disease (like his sons)

Star turn The Philadelphia Theatre Company celebrated its 35th anniversary June 6 at the Hyatt at the Bellevue, with an all-star lineup of performances by Kathleen Turner; Tyne Daly, star of the Broadway revival of Terrence McNally's Master Class ; McNally himself; Quentin Earl Darrington, star of the recent revival of Ragtime ; Jennie Eisenhower; and John Glover. It was announced that the theater had established the Terrence McNally New Play Award to be presented annually beginning next year.

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.

D RITA D'AVANZO , of VH1's "Mob Wives," hosts the South Philly Summer Kick-Off party at Galdo's (20th & Moyamensing) May 21. The Albanian-born D'avanzo, who lives on Staten Island, N.Y., is married to Lee D'avanzo , who is serving time for bank robbery. But she's not content to let him be seen as the tough one in the family, proclaiming on the first episode, "I beat up a lot of f---ing people. " Tickets are $25 at webtix.net. The fete runs from 8 to 11:30 and is followed by an after-party at Lounge 879 (110 Chestnut)

Last Sunday's article about a woman's courageous battle with celiac disease was remarkable ("Alice Salomon Bast wins Philadelphia Award for celiac work"). Bast's dedication is inspiring, but poses an interesting question: Given that celiac disease is so common, why has the life-sciences industry not developed viable treatment options? The reason, of course, is the connection between investing in innovation and the risks inherent in drug development. Significant development costs and the time it takes to market often drive corporate decisions and limit innovation.

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.

An upgrade to the food choices on Ocean City's deep-fried boardwalk is long overdue, so the new Pure Tacos stand from former Manhattan lawyer Ted Schroeder is worth rooting for. Inspired to create a flavorful gluten-free option due to his celiac disease, Schroeder has borrowed in equal parts from New York's hot taco trucks and quick-serve Mexican chains such as Chipotle Grill, with corn tortillas as a canvas for your choice of meats. The early-season service was rough, with a slow turnaround and a confused counter guy taking orders on a paper towel.

For the enthusiastic eater, going gluten-free is more than a lifestyle change. It's a paradigm shift. Simple meals become complicated. Staple foods of bread, pasta, pizza, bagels, cakes and cookies are no longer feasible; their wheat-free replacements can be completely inedible. And it is downright shocking how many salad dressings, sauces, and processed foods contain some traces of the verboten wheat. But as more people are diagnosed with celiac disease - and increasing numbers choose to exclude gluten for health reasons - food manufacturers have responded.

When, after months of tests, doctors finally concluded it was celiac disease that was causing Alice Bast to lose weight, her hair, and her general health, they told her this way: "The good news is we know what's wrong with you. The bad news is you have to go on a diet and you can never eat out again. " Celiac is a digestive disease triggered by the consumption of gluten, which is found in foods that contain wheat, rye, and barley. That means traditional pastas, breads and baked goods are out, as are unexpected items that contain gluten like soy sauce, some soups, and pasta sauces.