Consults: Gluten-Free for the Holidays, and Beyond

Consults: Gluten-Free for the Holidays, and Beyond
By THE NEW YORK TIMES
Published: December 22, 2009

Dr. Sheila Crowe responds to readers who are concerned about gluten-free foods and celiac disease.

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The Overlooked Diagnosis of Celiac Disease

From New York Times
December 16, 2009
By CAROLYN SAYRE

It took three decades to figure out what was making Donna Sawka so sick. Her symptoms — bloating, chronic diarrhea and weight loss — began early in childhood, and they only became worse as she aged.

Nine years ago, after developing severe anemia, a specialist told Ms. Sawka that she had celiac disease. The digestive disorder causes damage to the small intestine when gluten, a protein found in wheat, barley and rye, is ingested. People with the disease need to follow a strict gluten-free diet for the rest of their lives to avoid serious complications like osteoporosis and lymphoma, an immune system cancer.

Ms. Sawka, 48, of Fairless Hills, Pa., said she “was overwhelmed” upon learning she had the disease.

“I kept thinking about everything I wouldn’t be able to eat,” she went on. “I couldn’t even receive communion at church.”

Ms. Sawka’s reaction is a familiar one at the support group she attends. It takes the average patient 10 years to receive a diagnosis. And according to specialists, they are the lucky ones. Studies show that 3 million Americans, or 1 in every 133 people, have celiac disease. But 95 percent of them have yet to learn they have it, according to the National Institutes of Health.

“The entire disease and all of its manifestations are incredibly underdiagnosed,” said Dr. Charles Bongiorno, the chief of the division of gastroenterology and hepatology at the University of Medicine and Dentistry of New Jersey. “Patients often have it for a decade or two before they are diagnosed.”

Celiac disease is often difficult to detect because the symptoms vary so widely from person to person. Ten years ago, the medical community thought it was a rare disorder that affected only 1 in every 10,000 people, primarily children who had digestive problems and failure to thrive.

But physicians now know that the disease is much more common. Most patients never experience the so-called classic symptoms: bloating, chronic diarrhea and stomach upset. Instead, the signs are often as nebulous as anemia, infertility and osteoporosis.

“It’s a problem,” said Dr. Ritu Verma, section chief of gastroenterology, hepatology and nutrition and director of the Children’s Celiac Center at the Children’s Hospital of Philadelphia. “The majority of patients do not have the traditional signs and symptoms. If someone’s only presenting symptom is anemia, physicians will think of a hundred other things before they think of celiac disease.”

As a result, the condition is also commonly mistaken for other ailments. Ms. Sawka, for one, was told she had everything from irritable bowel syndrome to lupus to an allergic reaction from a spider bite before celiac disease was confirmed.

Part of the problem is also a lack of education among physicians, particularly internists. According to Dr. Bongiorno, most primary care physicians are simply unaware of new research that shows the disease is common and can manifest itself in unusual ways.

“They think it is an exotic malady,” he explained. “That persistent fallacy causes a less-than-appropriate effort to order the right blood tests and refer to gastroenterologists for care.”

In 2006, the National Institutes of Health started a campaign to raise awareness of the disease among both the general public and physicians. A goal was to increase rates of diagnosis because, unlike many ailments, there is a definitive way to stop celiac disease from progressing once it is recognized.

“The vast majority of cases experience a complete remission from symptoms once they are diagnosed and go on a gluten-free diet,” said Dr. Stefano Guandalini, director of the University of Chicago Celiac Disease Center. “So essentially, you have no disease. That is what makes it all the more important to be diagnosed.”

And there is no better time to be on a gluten-free diet. In 2008, 832 gluten-free products entered the market, nearly 6 times the number that debuted in 2003. Last year, gluten-free even emerged as a fad diet in the general population.

“The quantity and quality of these products is amazing,” said Dr. Alessio Fasano, the medical director of the Center for Celiac Research at the University of Maryland Medical Center.

Dr. Fasano said gluten-free products used to taste like cardboard but had significantly improved in recent years. “The only problem,” he said, “is that they cost five or six times more than their normal counterparts.”

Researchers are also beginning to experiment with drugs that may be able to block the immune response to gluten, much like a lactate pill. If the clinical trials are successful, individuals with celiac disease may be someday able to ingest small amounts of gluten.

Until then, the gluten-free diet is working for patients like Ms. Sawka. “I am perfect now,” she said after 35 years of feeling sick. “Every system in my body was in an uproar, and then everything just quieted down.”

Celiac Disease article in today's NY Times

This is a very exciting article, especially since I love Risotteria and think Joe Pace is a great and progressive restaurant owner in New York City. And my fellow NYC bloggers David, of Gluten Free NYC, and Catherine, of Gluten Free Guide, both got awesome shout-outs!!

Here is the text and link for the article


http://www.nytimes.com/2007/07/25/dining/25glut.html?pagewanted=1&_r=1

For the Gluten-Averse, a Menu That Works
By JENNIFER ROMOLINI


Evan Sung for The New York Time

JOSEPH PACE’S rice-centered Risotteria, in Greenwich Village, was never what would be called an experimental restaurant, until he began developing a special gluten-free menu.

It started with a gluten-free cookie. A simple step, it might seem, but gluten, a protein in wheat, barley and rye, gives baked goods elasticity. Without it, cakes, breads and pastries can be leaden, dry and crumbly.

“It took more than 40 dozen batches,” he said. “My background in organic chemistry definitely helped.”

The work paid off. Risotteria is a nationally known hub for people with celiac disease, an autoimmune disorder affecting about 1 in 100 Americans that can cause serious problems if even a bit of gluten is ingested.

Visitors frequently arrive at the restaurant straight from the airport, suitcases in tow, and dinner can seem like a celiac support group as regulars swivel in their chairs to talk about their hunt for food they can eat.

On a recent Tuesday night at Mr. Pace’s restaurant a preppy couple asked the people at the next table about the Sicilian pizza they were trying from the specials list. Farther down the packed, narrow space, diners exchanged guidebooks to gluten-free restaurants, and compliments flew around the room about the breadsticks; the light beer, made from sorghum instead of malted barley; and the rich brownies and cookies.

At the door a leather-jacketed couple discussed menu options and waited impatiently to get in.

“Are you going to get the gluten-free pizza?” the woman asked.

“Of course,” her companion replied. “You have to understand, this is like a chance of a lifetime for me.”

Like Mr. Pace, a growing number of restaurateurs have decided it’s worth catering to the gluten-free crowd. Chains like Outback Steakhouse and P. F. Chang’s now offer dishes without gluten.

New bakeries and pizzerias have popped up all over New York City, and restaurants that were already celiac-friendly have expanded their menus. There’s vegan at Candle 79, fusion food at Asia de Cuba, Italian at Sambuca, Greek at Gus’ Place and comfort food at Peters’ Gourmet Diner — all gluten-free.

Gluten-averse diners avidly track such sympathetic places with online help from glutenfreerestaurants.org and the tribe of celiac blogs that include, in New York, Gluten-free NYC (glutenfreenyc.blogspot.com), Gluten Free Guide (glutenguide.blogspot.com) and Please Don’t Pass the Nuts (allergicgirl.blogspot.com). Aside from safe food, they can find a camaraderie that’s unusual on New York’s jaded dining scene.

The pleasures of dining out are often denied people who avoid gluten because they are sensitive to it or have celiac disease. Menus are a source of anxiety and self-consciousness because — besides its presence in obvious culprits like bread, sauce thickeners, pasta and desserts — gluten also lurks in soy sauce, brewer’s yeast, bourbon, vegetable starch, vinegars, salad dressings, processed cheeses and some spices.

Creating a gluten-free menu is more difficult than, say, offering vegetarian options at a steakhouse. Chefs have to master special techniques and follow stringent regulations. Mr. Pace said each menu item — pizza, focaccia, breadsticks, cakes — took six months to develop, with the ingredients costing nearly five times as much as conventional ones.

Baking can be tricky without gluten, which creates a lattice of air pockets that binds doughs and batters while giving a moist, supple texture. To overcome the challenge, chefs turn to additives like xanthan gum to bind the flour together, guar gum to thicken and stabilize doughs and batters, and gelatin powder to moisten them. Breads are baked at very high temperatures to keep crusts crisp and insides soft.

While gluten-free dining is spreading in the United States, Dr. Peter H. R. Green, director of the Celiac Disease Center at Columbia University, said it is more common elsewhere in the world.

“In Buenos Aires,” Dr. Green said, “you’d have little trouble getting a gluten-free ice cream cone. In Helsinki you can order a gluten-free Big Mac at McDonald’s. In Dublin most menus are clearly marked ‘Safe for celiacs.’ This is the way to live a normal existence with this disease. In a city as big as New York, for there to be so few safe restaurants, that’s just really bad.”

Cooking gluten-free isn’t an entirely altruistic act by chefs. A new base of customers can attract big business to a fledging location or revive an established spot.

“I’ve definitely seen a spike in business,” said Anthony Avellino, owner of Bistango, a 16-year-old Italian restaurant in Murray Hill. Mr. Avellino recently added dishes made with Tinkyada brown rice pasta, and dishes from Everybody Eats bakery in Brooklyn like celiac-safe bruschetta, served on gluten-free bread, and after-dinner biscotti. “When you’re a neighborhood place like we are, it’s always nice to see new customers and fresh faces,” he said.

In February Gourmet Land, a Chinese restaurant on the Upper East Side, opened with a menu including a separate 50-item gluten-free listing with items like soy sauce and other sauces made without wheat, crisp cheng du chicken breaded with cornstarch instead of flour, and gluten-free egg rolls rolled in ... well, egg. The place has been packed nearly every night since its opening, no small feat for a neighborhood Chinese restaurant in Manhattan. Many customers, of course, have celiac disease.

“They’ve had meet-ups here, and honestly, some nights every table in the restaurant is someone who’s celiac,” said the manager, Laura DeAngelis.

Anne Roland Lee, the nutritionist at the Columbia Celiac Disease Center, said that finding gluten-free menus can be a great relief. “I’ve had patients go to some of the city’s most famous restaurants,” she said, “only to leave after being told they could only safely have a Coke.”

Catherine Oddenino, a 29-year-old Manhattan marketing manager with celiac disease, which can cause serious digestive problems, anemia and nutritional deficiencies, knows the frustration.

“I’ve been to so many places where the managers and waiters have been irritated and annoyed,” Ms. Oddenino said. “Too often, they don’t understand the gravity of the situation. Last year I had to go to a work holiday dinner at an upscale restaurant. I called ahead and triple-checked what I could and couldn’t eat with the management and still wound up with a huge crouton at the bottom of my salad. It’s extremely frustrating.”

For those who don’t have celiac disease, though, the gluten-free restaurant experience can be a bit odd.

“It felt a little cultish,” said Ridge Carpenter, a Manhattan waiter and student who worked at Risotteria briefly in 2005. “And as a server, there was so much pressure to get everything right. In a regular restaurant you’d get the occasional allergy you had to be careful about, but this was around 75 percent of my customers. It was really stressful.”

The experience can also be a strain on celiac-nonceliac relationships.

Kelly Courson, 36, a receptionist at an investment firm in Midtown and a founder of a popular blog, celiacchicks.com, dines exclusively gluten-free, sometimes to the chagrin of her boyfriend, John Mountain.

“He’s always rolling his eyes when I talk to the other tables,” Ms. Courson said. “But I can understand how it can be a little annoying: we’ll have dinner at Sambuca on Thursday night and see the same people at brunch at Peters’ Gourmet Diner on Sunday.”

But Ms. Lee called gluten-free restaurants “a surrogate support group.”

“When everyone is on the same page, and you know you’re going to eat a meal safely,” she said, “you can finally relax and just be social.”