Thought Leaders Program 2009: Dr. Peter Green

The Celiac Disease Center at Columbia University (CDCCU) recently hosted a day-long Thought Leaders program where members of the center spoke about various aspects of celiac disease and invited feedback from dozens of attendees. The guests, who came from as far away as California and Minneapolis, included Merle Cachia and Mary Ferry of New York City's CSA Chapter, Sue Goldstein of the Westchester Celiac Sprue Support Group (WCSSG), Sloane "Allergic Girl" Miller, Michael Thorn of Suffolk County Celiacs (SCC), and representatives of the Celiac Disease Foundation (CDF) and The Kogan Celiac Center of New Jersey (KCC).

Official video cameras were present, so it's possible that most or all of the presentations will go online.

For instance CDCCU founder/director Dr. Peter Green's comments are already on YouTube (and in this blog post) in three parts.

PART I (8:55)
Dr. Green's opening remarks cover the origin of the CDCCU, including the part played by Sue Goldstein, Rory Jones, and Ann Whelan. Dr. Green stresses the importance of fundraising, mentions the influence of a $300,000 donation earmarked for patient care and education, and discusses the number of doctors at Columbia who have now been diagnosed with celiac disease themselves. In discussing his staff, Dr. Green emphasizes the importance of the nutritionist and expresses his concern about the quality and credibility of professionals trying to deal with celiac disease.




PART II (8:22)
Dr. Green discusses the new understanding of celiac disease as a multi-system disorder than can affect any organ. He emphasizes the importance of conventional testing and notes that while Finland appears to have diagnosed about 70% of its people who have celiac disease—and Italy, Ireland, and Australia might have diagnosed about 20% of them—the United States still seems to have diagnosed less than 1%. Dr. Green notes that countries with national health plans seem more motivated to seek and find cases of celiac disease to delay and lower health care costs, with some countries subsidizing gluten-free food. In accord with recent studies including the one from the Mayo Clinic, Dr. Green notes that the number of cases of celiac disease seems to be increasing. In Finland the number of cases seems to be increasing along with other autoimmune conditions and allergic conditions, and 2.5% of the elderly test positive even though 1% of the general population has it.




PART III (10:41)
Dr. Green continues by discussing the recommendation for introducing small amounts of gluten along with breastfeeding between the first 4-6 months of infancy, but says that the recommendation may be subject to change. Around 2:33, he mentions intestinal permeability varying with different stimuli including alcohol, exercise and GI infection—this is something that sparked my curiosity, so I'm trying to learn more about intestinal permeability, its causes and its symptoms. Dr. Green returns to the importance of nutritional counseling that helps people with celiac diseae know what to avoid and what to eat. He goes on to talk aobut how he's come to believe in gluten sensitivity: "symptomatic response to gluten withdrawal in the absence of celiac disease." It exists. He cites a number of examples, including DH (20% of people with DH have normal intestinal biopsies) and people who neurological symptoms in response to gluten. He has also noted IBS patients who have negative bloodwork for celiac disease but villi damage nonetheless. He touches on some sticky related issues such as getting other family members tested and labeling asymptomatic patients as having the disease. He notes that at the recent Digestive Diseases Week (DDW) in Chicago, there was a substantial increase in the number of celiac papers, but research as well as diagnosis still seem to be lagging.

New York Times Spotlights Gluten-Free Athletes

Climber Dave Hahn and endurance athlete Mimi Winsberg both improved performance after being diagnosed with celiac disease and eliminating gluten from their diets, reports Anna Seaton Huntington in the New York Times article "A Debilitating Disease That Is Often Unknown" (October 9, 2008).

"It was like doping," Winsberg, 42, said. "Suddenly I was running six-minute miles instead of nine-minute miles. Before I had placed in the bottom third in triathlons. Four weeks gluten free, and I placed second in a triathlon. It was like reverse aging. I went from feeling 38 to 28 to 18."

Chiming in is Dr. John Reasoner of the United States Olympic Committee: "In six to eight weeks, if they’ve followed the diet, it’s night and day."

Also in the article, Dr. Peter Green continues to disseminate the key message that "Celiac is grossly underdiagnosed in this country." How is it diagnosed? Huntington writes that "Celiac disease is diagnosed through an inexpensive panel of blood tests" though it is confirmed through endoscopic biopsy.

Tomorrow Winsberg competes in the Ironman World Championship Triathlon in Hawaii, an event that involves a 2.4-mile ocean swim, a 112-mile bike ride, and a 26.2-mile coastal run. The article asserts that she could hardly have considered participating had she not discovered that being gluten-free was crucial to her well-being.

Thanks to Laura S. for the lead!

Mary's Gold Crackers

Plus Award-Winning Recipes
























The above picture shows renowned chef Jacques Pépin with Mary's Gone Crackers co-founder Mary Waldner at this summer's Fancy Food Show hosted in Manhattan by the National Association for the Specialty Food Trade's (NASFT). At the food show, Mary's Gone Crackers won the Specialty Outstanding Food Innovation, Gold Award for Outstanding Cracker of 2008.

Yes, that's right: Gluten-free crackers got the gold in the cracker category! Will wonders never cease? (I hope not.)

While they were in town for the food show, Mary and her husband and partner, Dale Rodrigues, hosted a dinner (chaperoned courtesy of publicist Rachel Kay) at the GFRAP restaurant Lumi that was attended by myself, Erin Smith of Gluten-Free Fun and the New York City Celiac Disease Meetup Group (NYCCDMG), Nancy Lapid of About.com, and Cynthia Beckman and Dr. Peter Green of the Celiac Disease Center at Columbia University (CDCCU). While we waited for our orders, we munched on sticks and twigs piled atop our table. That might sound a little primitive unless you know that Mary and Dale recently branched out and added Sticks & Twigs to their product line. The "gluten equivalent" of these hearty and crisp snacks might be sesame sticks—so keep them in mind for dips and appetizers as well as attacks of the munchies.

A funny thing about our get-together was how some of us were virtually bubbling over with ideas about Mary's Gone Crackers—they should be vitamin fortified, they should come with something to educate people about what "gluten-free" means, etc. But the bottom line is that Mary's Gone Crackers are fine as they are—and that Mary's Gone Crackers has a very good track record in terms of working with reputable gluten-free causes, including the Celiac Disease Foundation (CDF).

In fact, I think I first tasted the crackers because they'd been donated as refreshments at an event featuring Dr. Green (more recently, Sticks & Twigs samples were in the goody bags at the recent "Chill and Grill" CDCCU fundraiser in Queens), but the products really won me over after I used a coupon to buy some for myself at my local health food store. A 13-cracker serving contains 12% of the daily value of dietary fiber, 6% of the daily value of iron, and 4% of the daily value of calcium. And, as I've just learned this week, the Herb flavor goes well with peanut butter.

I've also heard some musings of combining the crackers with chocolate, but I haven't gone there yet.

Meanwhile, across the Atlantic, Coeliac UK (CUK) named two winners in its Gluten-Free Chef of the Year competition, part of its Food Without Fear campaign. Vanessa Scott, of the Norfolk hotel-and-restaurant Strattons, won with her cheesy Twice-Baked Binham Blue & Potato soufflé [PDF]; Christine Bailey, a journalist and chef trainer [see article here], won with her Apricot and Orange Polenta Cake [PDF]. Catering student Sophie Haskins received "outstanding achievement" recognition for her Oshi Sushi [PDF].

Congrats to all!

Photo courtesy of the NASFT

Arrivals, Departures, and Weddings at CDCCU

Judging from word-of-mouth and the looks of the new stationery, there's been some reshuffling recently at the Celiac Disease Center at Columbia University (CDCCU).

Among the departures is nutritionist Anne Roland Lee, who recently wed and became the United States rep for Dr. Schär foods, as reported by nutritionist Tricia Thompson, her friend and colleague...and wedding guest. Thompson notes that the gluten-free wedding's caterer was Scarsdale's Standing Room Only and the cakemaker was none other than Brooklyn's Everybody Eats.

The CDCCU currently has the following staff. (I haven't found all "official" links, so here and there I offer some unusual ones.)

GASTROENTEROLOGY
Peter H.R. Green, MD (Director)
Suzanne K. Lewis, MD
Christina Tennyson, MD (also just married!)

PEDIATRICS
Amy R. DeFelice, MD
Philip G. Kazlow, MD
Steve Lobritto, MD
Mercedes Martinez, MD

NUTRITIONIST
Suzanne Simpson, RD (arriving from Canada!)

DIRECTOR OF DEVELOPMENT
Cynthia Beckman

CLINICAL RESEARCH COORDINATOR
Maria Teresa Minaya

Nutritionist Simpson is scheduled to make a presentation on September 14, 2008 at the Colin Leslie Walk for Celiac Disease in Rye, New York. Dr. Green is scheduled to speak at the September 21, 2008 meeting of the Westchester Celiac Sprue Support Group (WCSSG).

"Gluten-free diets gaining in popularity"

Recent Article in USA Today

"Meet the latest dietary bad boy: gluten," starts Kim Painter's USA Today article "Gluten-free diets gaining in popularity" (August 17, 2008).

Painter notes that "Marketers estimate that 15% to 25% of consumers want gluten-free foods — though doctors estimate just 1% have celiac disease, the best-defined and most severe form of gluten intolerance, says Cynthia Kupper, executive director of the non-profit Gluten Intolerance Group of North America (GIG)." Painter also quotes American Dietetic Association spokeswoman Dee Sandquist as saying that there is "a fad aspect" to the diet among college students.

Painter cites Dr. Alessio Fasano as noting that 110,000 Americans have been diagnosed with celiac disease, up from 40,000 in 2003—but that about 2,890,000 remain undiagnosed. He notes that, besides those people, there are those who may react poorly to gluten even though they do not test positive for celiac disease. Sandquist surmises that others might feel better on a gluten-free diet because they may be eating more fruits and vegetables and less fast food and processed food.

Dr. Peter Green (right) of the Celiac Disease Center at Columbia University (CDCCU) stresses the importance of getting an exact diagnosis from a doctor, which is best done while on a gluten-inclusive diet.

If, as the article suggests, the growing "popularity" of gluten-free diets might offer more and better dining options, just imagine how much better it would be if the millions of people with undiagnosed celiac disease received correct diagnoses. Their health would improve while their numbers would enhance a fad-proof gluten-free market.

A sidebar identifies the following trouble signs that one should discuss with a physician:

• Frequent diarrhea
• Frequent constipation
• Frequent bloating
• Unintended weight loss
• Failure to grow (in children)
• Anemia
• Unexplained fatigue
• Frequent headaches
• Bone or joint pain
• Itchy skin lesions
• Tooth enamel defects
• Mouth ulcers

Meanwhile, in Mississippi

Here's a television appearance from Elizabeth Smith, founder and president of the Gulf Coast Celiac Foundation. Elizabeth, also the owner of Celiac Health Management, talks with the WLOX anchors about how celiac disease is often misdiagnosed. She advises that people diagnosed with conditions such as IBS, but who do not improve with medical treatment, should inquire as to whether they might also have celiac disease.

And there's an NYC connection, too: Even though the Gulf Coast Celiac Foundation is far from the Big Apple, its website includes a number of papers by Dr. Peter Green of the Celiac Disease Center of Columbia University (CDCCU).



Source (3:35)

FREE OFFER: THE ULTIMATE GUIDE TO GLUTEN-FREE LIVING

The Ultimate Guide to Gluten-Free Living, a booklet (the size of a memo pad) published by the Celiac Disease Center at Columbia University (CDCCU), is available free to those who respond to an offer before this Friday, July 25, 2008.

You can find out more about the offer at Nancy Lapid's Celiac Disease Blog.

For a more extensive source about celiac disease, check out Celiac Diseae: A Hidden Epidemic by Dr. Peter Green of the CDCCU and science writer/film producer Rory Jones of the Westchester Celiac Sprue Support Group (WCSSG).

MYSTERY DIAGNOSIS

Okay, I admit that this episode of Mystery Diagnosis is probably not much of a mystery here—especially if you recall the Murphy family. Still, there are some fascinating twists and turns in this tale, which offers lessons about developmental problems as well as family testing. Plus, there's an appearance from Dr. Peter Green and a reference to the Westchester Celiac Sprue Support Group (WCSSG).

PART ONE (6:05)




PART TWO (8:00)

RECENT STUDIES

One of the benefits of belonging to the Westchester Celiac Sprue Support Group (WCSSG) is the group's newsletter, which usually reports on recent medical studies. The new newsletter is no exception. Here are highlights:

OATS A Spanish study of 134 oat products from North American and Europe found many (but not all) to be contaminated by rye, wheat, and—most often—barley.

PREGNANCY AND MISCARRIAGE An Italian study concluded that, although "celiac disease is a frequent cause of recurrent miscarriage," adapting a gluten-free diet "seems to favor a positive outcome of pregnancy in most CD patients with recurrent miscarriage."

SOCIAL PHOBIA An Italian study looked into reports of anxiety and depression being highly prevalent among people with celiac disease. Comparing 40 patients with celiac disease with 50 "healthy" subjects, the study found that "Despite the limited number of cases evaluated, the present study showed a significantly higher prevalence of social phobia in CD patients compared with...healthy subjects. Future studies are needed to clarify the possible social phobia-induced risks such as school and/or work failure in CD patients."

SALIVA TEST An Italian study finds that a salivary test can be used to diagnose celiac disease and monitor dietary compliance. [NOTE: Such as test has not been adopted in the United States, where diagnosis and monitoring currently revolves around a set of blood tests, or serologic panel.]

The newsletter also includes information about a study-in-progress: Drs. Elizabeth Shane and Peter Green of Columbia-Presbyterian University Medical Center are conducting a study of the effect of a gluten-free diet on bone growth and regeneration. If you are planning to start or you have recently started a gluten-free diet and you are able to travel to Columbia Presbyterian, you can contact Halley Eisenberg at 212-342-5725 for more information.

And, if you are interested in studying Dr. Green, be aware that he will be the guest speaker at the fall meeting of the WCSSG on September 21, 2008. That's one week after the 2008 Colin Leslie Walk for Celiac Disease in, um, Rye.

BEST DOCTORS 2008

For years, the Best Doctors issue of New York magazine has cited the same six doctors as top celiac specialists in the area. But this year, there are only five doctors listed—and that poses what might be considered a "minor" problem.

Back in 2006, there was some discussion of the flaws of the Best Doctors listings. As I wrote then:

How reliable are the lists? At Slate, physician [Kent Sepkowitz] prescribes taking them with a grain of a salt. "To my expert eye," he writes, "every year the New York survey gets it about half right: Half of the selections are first-rate doctors, no doubt about it. Another 25 percent are people whom I don't know well (though I have my doubts), and 25 percent are certifiable duds--doctors who (hopefully) haven't seen a patient in years but have risen to the lofty realm of high society and semi-celebrityhood."

I haven't charted my own experience with the list, but that sounds about right. I think that, when searching for a physician in the medically populous metropolitan area, it's good to seek and consider the advice of doctors you already trust, support group members, and friends in addition to the Best Doctor/Top Doctor guides. It's not easy to sort through all of that, but the method might give you the best odds of getting optimal results.

So this year, when you search for the best doctors under the keyword celiac, you get five doctors—all of whom happen to be pediatric gastroenterologists:

Dr. Philip Kazlow
Pediatric Gastroenterologist
New York-Presbyterian/Morgan Stanley Children's Hospital (Manhattan), Valley Hospital (Ridgewood, NJ)

Dr. Joseph Levy
Pediatric Gastroenterologist
NYU Medical Center (Manhattan)

Dr. Keith Benkov
Pediatric Gastroenterologist
Mount Sinai Medical Center (Manhattan), Englewood Hospital & Medical Center (Englewood, NJ)

Dr. Leonard Newman
Pediatric Gastroenterologist
Westchester Medical Center (Valhalla, NY), Our Lady of Mercy Medical Center (Bronx)

Dr. Michael Pettei
Pediatric Gastroenterologist
Schneider Children's Hospital, North Shore University Hospital (Manhasset/New Hyde Park, NY)

Missing from the list is any non-pediatric gastroenterologist who specializes in celiac disease. This is odd because Dr. Peter Green—one of the country's leading celiac disease specialists and a longtime "Best Doctor" (and, yes, also one of my own doctors)—is still alive and well and heading the Celiac Disease Center at Columbia University (CDCCU), where Dr. Kazlow practices and where Dr. Levy once practiced.

So if, like more and more people, you're seeking a non-pediatric celiac disease—or dermatitis herpetiformus (DH)—specialist in New York City, I don't think the 2008 Best Doctors list will be very useful to you. New York magazine and its partner on the article, Castle Connolly, have done readers a disservice by not listing a single specialist for adult celiac disease.

Take heart, though. Here at Gluten-Free NYC, I'd still suggest contacting the CDCCU. There is, at present, no comparable facility in the Big Apple (though I do note the recent opening of the Kogan Celiac Center in Livingston, New Jersey).

SPRUETUBE: PARENTS TV ON DEMAND

This Parents TV segment includes an interview with Dr. Peter Green and a look at a Celiac Disease Center at Columbia University (CDCCU) cooking event at Cooking by the Book. Dr. Green says that it's important for newly diagnosed children to have an accurate idea of what a gluten-free diet is, and he also notes that children who are diagnosed early tend to be the best when it comes to staying on the diet. The video also includes comments from CDCCU nutritionist Anne Roland Lee.



Source (6:21)

HOLIDAY COOKING CLASS

On Monday, December 3, 2007, from 6:30 pm until 9:30 pm, the Celiac Disease Center at Columbia University (CDCCU) will host a gluten-free holiday cooking class at Cooking by the Book (13 Worth Street, New York, NY).

The event includes a talk from Dr. Peter Green plus a Wine and Hors d'Oeuvres Reception, a Three-Course Gluten-Free Meal with Seasonal Wines, Professional Cooking Instruction, Personalized Aprons, and Gluten-Free Recipes. Cooking by the Book and its director, Suzen O'Rourke, were involved in the celiac disease episode of Keeping Kids Healthy that aired in the metropolitan area over the weekend.

Tickets costs $220 per person, with a percentage going to The Celiac Disease Center at Columbia University. To register, contact Cynthia Beckman at 212-342-4529 or cb2280@columbia.edu.

ADDENDUM (November 28, 2007) Thanks to Ben on the NYC Celiac Disease Meetup Group message board, I see that The New York Times says the dishes will include a chocolate roulade with mocha-whipped cream filling and that $55 of the cost goes to the CDCCU.

KEEPING KIDS HEALTHY: CELIAC DISEASE


















The celiac disease episode of Keeping Kids Healthy turned out to be an outstanding opportunity for families to learn about celiac disease, so I'm very sorry I didn't post about WNET's Saturday morning broadcast sooner than Friday night.

You can, however, get an idea of the episode in this very post and the episode's web page, and even order the episode on DVD for private or public screening. The segment used two case studies—one revolving around a little girl (Emma Teitelbaum), the other involving a teenage boy (Colin Leslie)—to discuss symptoms of the condition, the length of time that can pass before doctors even suspect it, ways that families can adjust to a gluten-free diet, and the reasons for family testing and continued family vigilance even when tests come out negative. (Celiac disease, which has a strong genetic association, can manifest at any time.)

Among those appearing on the segment were the show's host, Dr. Winnie King, as well as Dr. Peter Green (pictured), Dr. Govind Bhagat, and Cynthia Beckman of the Celiac Disease Center at Columbia University (CDCCU), and George Chookazian of Foods by George.

Like Susan Cohen's video Generation Gluten-Free, this episode of Keeping Kids Healthy seems very comfortable with its subject matter. Just about my only quibble is that it refers people to the Celiac Sprue Association but doesn't mention more organizations, such as the Gluten Intolerance Group (GIG), that have a better track record in terms of accuracy.

Photo of television: David Marc Fischer

GLUTEN-FREE TV: KEEPING KIDS HEALTHY


















Some publicity came in recently from the Celiac Disease Center at Columbia University (CDCCU):

Keeping Kids Healthy, a children’s health television series produced in association with Thirteen/WNET New York, will air a segment on Celiac Disease (Show #807) featuring the Teitelbaum family, the Leslie family, and Dr. Peter Green. Many of the air dates are below. Please check your local station for additional programming.

11/24 Saturday 6:30am WNET (NY, NJ, CT)

11/24 Saturday 7:30am WLIW (NY, NJ, CT) [unconfirmed]

11/24 Saturday 8:00am/4:00pm WCNY2 (Syracuse, NY)

11/26 Monday 11:30am KRCB (San Francisco, CA)

12/01 Saturday 4:30am WTVS (Detroit, MI)

12/01 Saturday 9:00am WHUT (Washington, DC)

12/06 Thursday 9:00am WYBE (Philadelphia, PA)

12/06 Thursday 6:30am KRSC (Tulsa, OK)

12/09 Sunday 11:00am KRSC (Tulsa, OK)

12/16 Sunday 10:00am WFYI (Indianapolis, IN)

12/23 Thursday 10:30am KUEN (Salt Lake City, UT)

Photo: David Marc Fischer

PETER GREEN RETURNS TO THE 92ND STREET Y

Last November at the 92nd Street Y, celiac disease specialist Peter Green gave a lecture on Celiac Disease: An Emerging Epidemic. This coming November, Dr. Green returns to the Y accompanied by a trio: pediatrician Amy DeFelice, nutritionist Anne Lee, and pediatrician Anna Nowak-Wegrzyn.

Their presentation, Sorting Through Celiac Disease and Food Allergies, is scheduled to take place Sunday, Nov 18, 2007 from 3:00 to 5:30 pm. It's another good opportunity to hear the latest from medical professionals who are "in the know." If you're interested, then RSVP ASAP. OK?

Thanks to the New York City Celiac Disease Meetup Group for keeping me in the know!

MEETINGS AND SUCH

I recently received announcements about upcoming meetings that are not Sunday's gathering of the Westchester Celiac Sprue Support Group.

The Greater New York City Celiac Support Group (CSA/USA, Inc.) will have its next dinner at Bistango (415 Third Avenue at East 29th Street) on Thursday, September 20, at 6:30 pm. (6:15 pm arrivals are encouraged.) Reserve by Tuesday, September 18 by calling Merle at 212-662-2464 or Mary at 212-304-1026.

And, at 7:30 pm on Tuesday, October 2, Dr. Peter Green will offer a lecture and a Q&A appear at a fundraising meeting of the Suffolk County Celiac Group at

West Islip Community Center Auditorium (front entrance)
90 Higbie Lane (between Sunrise Hwy & Montauk Hwy)
West Islip

The $5 admission will be matched by the Suffolk County Celiacs, with the total going to the Celiac Disease Center at Columbia Presbyterian University. Seating is limited to the first 150 people.

The Suffolk County Celiac Group also announced that it will host its next Vendor Fair in 2009, not 2008.

And Sunday, October 14, 2007 remains the date for the next Colin Leslie Walk for Celiac Disease, an all-in-one event where funds will be raised, Dr. Green and nutritionist Anne Lee will speak, and a Vendor Fair will take place.

NEWSWEEK: WAITER, PLEASE HOLD THE WHEAT

Now online: "Waiter, Please Hold the Wheat," a well-researched Newsweek article [September 17, 2007] about celiac sprue.

Written by Anne Underwood, the piece begins with the story of Alice Bast, founder of the National Foundation for Celiac Awareness (NFCA). She suffered fatigue, migraines, depression, weight loss, hair loss, dental problems, GI symptoms, and tingling in the extremities as well as a traumatic failed pregnancy before she received her accurate celiac diagnosis—after seeing nearly two dozen doctors.

The article refers to Dr. Alessio Fasano's 2003 estimate that about 3 million Americans (1 in 133) have celiac sprue, but notes that the condition "remains vastly underdiagnosed." It mentions that symptoms (such as anemia, osteoporosis and failure to thrive in young children) can go well beyond the digestive tract, and offers an explanation as to why Dr. Peter Green (pictured) would say, "Name the organ, and celiac disease can affect it." Underwood writes that, in response to gluten, the immune system in an affected individual "generates antibodies to an enzyme called tissue transglutaminase. This enzyme is an innocent bystander that acts on gluten in the lining of the intestine. But because the enzyme is also found throughout the body—in the skin, heart, thyroid, bones and nervous system—antibodies that attack it can direct their fire at any of these other organs, too."

Underwood emphasizes that the longer someone with celiac sprue remains untreated, the more problems are likely to develop, and also makes the point that, among autoimmune conditions, celiac sprue is one of the easiest to treat, as it involves maintaining a diet instead of undergoing surgery or treatments. (See this post for information about people who were diagnosed with celiac sprue and then mistakenly told they could safely eat gluten.)

The article also asserts that maintaining the diet is easier than ever due to the creation of new products and the rising number of restaurants offering special, gluten-free menus. Mentioned are the Outback and Carrabba's chains, with Risotteria scoring a photograph and Bistango depicted as the site of a lunch between Heidi Collins (pictured) and Celiac Chick Kelly Courson. Each restaurant is part of the nationwide Gluten-Free Restaurant Awareness Program (GFRAP), which, I'm sorry to note, is not recognized in the article.

The article ends with a mention of honeymooning blogger Shauna James Ahern and a description of her forthcoming book Gluten-Free Girl as "a delightful memoir of learning to eat superbly while remaining gluten-free." According to Amazon, the book will be out on October 5, 2007.

ADDENDUM People seeking more information about celiac sprue may find the following links useful:

Celiac Disease Foundation
Gluten Intolerance Group
The Mayo Clinic
Celiac Disease Center at Columbia University
Beth Israel Deaconess Medical Center Celiac Center
University of Chicago Medical Center Celiac Disease Center
University of Maryland Center for Celiac Research
NIH Celiac Disease Awareness Campaign

Newsweek cover image: PRNewsFoto/NEWSWEEK

BEST DOCTORS 2007

The current issue of New York offers the 2007 update of its Best Doctors list. As far as search results under the keyword celiac are concerned, this year's area doctors form the same sextet as last year's set--see last year's post for a discussion of the list's reliability.

Dr. Peter Green
Gastroenterologist
New York-Presbyterian Hospital/Columbia (Manhattan)

Dr. Philip Kazlow
Pediatric Gastroenterologist
New York-Presbyterian/Morgan Stanley Children's Hospital (Manhattan), Valley Hospital (Ridgewood, NJ)

Dr. Joseph Levy
Pediatric Gastroenterologist
NYU Medical Center (Manhattan)

Dr. Keith Benkov
Pediatric Gastroenterologist
Mount Sinai Medical Center (Manhattan), Englewood Hospital & Medical Center (Englewood, NJ)

Dr. Leonard Newman
Pediatric Gastroenterologist
Westchester Medical Center (Valhalla, NY), Our Lady of Mercy Medical Center (Bronx)

Dr. Michael Pettei
Pediatric Gastroenterologist
Schneider Children's Hospital, North Shore University Hospital (Manhasset/New Hyde Park, NY)

CANADIAN CELIAC HEALTH SURVEY

I strongly recommend reading this recently published report--on a survey of Canadians with celiac disease (via PDF)--that appeared in the April 2007 issue of Digestive Diseases and Sciences. Surveyed were members of the Canadian Celiac Association who responded to a questionnaire reviewed by Dr. Peter Green, among others.

The report offers a detailed overview of people with celiac disease in north North America and concludes with remarks that seem applicable to people with celiac disease everywhere:

The results of this study emphasize the need for early diagnosis, treatment and follow-up of celiac disease. Despite the availability of excellent antibody screening tests, delays in diagnosis of celiac disease remain a key issue. This needs to be addressed given the current prevalence estimates of 1 in 133 having celiac disease in North America. Better awareness among family physicians, dietitians and other health professionals about the variety of clinical presentations, especially anemia, osteoporosis, reproductive problems and autoimmune disorders is essential. Utilization of antibody testing for screening at-risk groups, especially first-degree relatives, would be potential strategies to reduce delays in diagnosis.

Having to follow a strict gluten-free diet for life has a major impact on the quality of life of individuals with celiac disease. Given the difficulty in determining the gluten-free nature of foods, there is a need for food manufacturers to ensure complete and accurate labeling of gluten sources and for food service establishments to provide accurate information on the gluten content of food served. Comprehensive education of newly diagnosed patients, by dietitians and physicians with expertise with expertise in celiac disease, will help optimize compliance, improve quality of life and reduce the risk the numerous complications associated with this common disease. [sic]

Also highly recommended: Rosie Schwartz's "Gluten Be Gone!"--a related article from Canada's National Post (June 5, 2007).

Thanks to dietitian Shelley Case for spreading the word about the article and this thorough survey, on which she played a leading role.

PEOPLE ARTICLE

The current issue of People--dated June 11, 2007, it asks "What Happened to Lindsay Lohan?" on the cover--includes a two-page article devoted to celiac disease. The issue is unlikely to appear on the magazine's website, but it should be readily available at newsstands, libraries, and waiting rooms. More on the waiting rooms later.

Sharon Cotliar's article "No Wheat, No Worries" combines facts about celiac disease with short profiles of two California moms with kids diagnosed with the condition. The medical experts quoted in the article are New York's own Dr. Peter Green, director of the Celiac Disease Center at Columbia University and co-author of Celiac Disease: A Hidden Epidemic, and Atlanta's Dr. Cynthia Rudert, medical advisor for the Celiac Disease Foundation. The two moms are Sarah Givens and Danna Korn. Danna, the founder of Raising Our Celiac Kids (ROCK), is also author of Kids With Celiac Disease, Wheat-Free, Worry-Free, and Living Gluten-Free For Dummies.

The article defines celiac disease as "an autoimmune ailment, triggered by gluten, that damages the lining of the small intestine." Opening with a classic-sounding case of celiac disease in a three-year-old whose symptoms included severe anemia and belly distension, it covers the challenge of switching to a gluten-free medical diet as well as recent improvements in labeling and product availability that make the adjustment easier.

From a medical perspective, the article states that celiac disease "may affect as many as 1 percent of Americans...although many may be misdiagnosed and some suffer from only minor symptoms." It refers to Dr. Green (pictured) as saying that the time between onset and accurate diagnosis averages 11 years. It also mentions that women are twice as likely to have celiac disease and lists some of the manifestations: fatigue, anemia, infertility, osteoporosis, some cancers, vitamin deficiencies, abdominal bloating and pain, both diarrhea and constipation, and even irritability.

The story also includes a photo of Danna and her family with a toaster (marked GLUTEN-FREE...Good for me!), another shot of Danna with Sarah Givens and her daughter, and a funny sidebar image showing gluten-containing foods marked with yellow CAUTION tape.

The article ends with Dr. Rudert advising people who suspect that they have celiac disease to get a complete blood tests, and notes that diagnosis is confirmed with biopsies of the small intestine. It refers readers seeking more information to the National Institute of Health and Danna Korn's Gluten Freedom.

So what's to be done now that People has covered celiac disease? Michael Thorn of Suffolk County Celiacs suggests emailing the magazine "to thank them for the article, share a brief personal story and/or encourage them to cover adults with CD. Praise them for covering this very common disease and ask they they do more."

And here's something else you can do: When you're in a doctor's waiting room, look for the copy of People and leave it open to page 143, where the article starts. Better yet, find out if the article can be kept in the waiting room and otherwise made available for other patients to read.

Dr. Green has talked about raising awareness of celiac disease in doctor's offices. This People article could be very useful in achieving that goal.

PS The April 9, 2007, People briefly referred to celiac disease in an item on Elisabeth Hasselbeck.