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.

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).

NEWS FROM ACROSS THE RIVER

This week New Jersey newspapers ran two articles having to do with services available in The Garden State.

Lorraine Ash's "Celiacs are what they eat" at DailyRecord.com (May 11, 2008) takes a look at the Morristown Celiac Disease Support Meetup Group (MCDSMG), which is run by registered dietitians Lynn Cicero of Morristown and Natalie Mazurets of Madison. The article briefly profiles the dietitians, visits a recent meetup at Whole Foods with Gluten-Free Baking Classics author Annalise Roberts of Mahwah, and describes how the meetup group helps to educate attendees, noting that "Meetup members learn about the 200 symptoms that can signal Celiac disease -- from depression to chronic fatigue, belching to diarrhea, headaches to infertility -- and how the wide span can lead to misdiagnoses such as rheumatoid arthritis, osteoarthritis, fibromyalgia, depression, multiple sclerosis and more."

But before going gluten-free, a person should get tested first! That's one of the messages in Meg Nugent's article "Before going gluten-free, make sure you need to" in The Star-Ledger (May 13, 2008).

Sample excerpts from the article, which revolves around the opening of the Kogan Celiac Center (KCC) in Livingston, New Jersey:

Shortly after the Kogan Celiac Center opened its doors last month, the facility's clinical coordinator created a slogan that speaks to this warning:

"Stop: Before you cut back, test for celiac!"


Celiac disease affects more than 3 million people in the United States but it remains a vastly under-diagnosed condition -- about 97 percent of Americans with celiac disease don't know they have it, according to the Celiac Disease Foundation.


[Kogan coordinator and dietitian] Margaret Masiello explained that an undiagnosed celiac who tries a gluten-free diet will only mask the existence of definite markers for the disease, including the "characteristic inflammatory process" of the small intestine and higher than normal levels of certain antibodies that are found in people with celiac disease. If those markers are concealed, then any testing that is done will have inaccurate results.


"The gold standard for testing for celiac disease is the combination of blood work that shows the antibodies and a positive biopsy that shows damage to the small intestine," said Masiello.

Let's say you suspect you have celiac disease and want to get tested but you've been eating gluten-free for a while.

"They'll have to eat gluten for four weeks (before testing can be done). That's the time believed to be needed to start those antibodies up again," Masiello said.