Columbia Introduces Free Monthly Roundtables!

As part of its mission to serve people with celiac disease in the metropolitan area, the Celiac Disease Center at Columbia University (CDCCU) now offers free monthly "roundtable" meetings that will explore a variety of subjects.

The first of the roundtables, specifically addressed to parents of young children with celiac disease, will be held on Tuesday, September 15, 2009 from 6:00—8:00 pm in the Atchley Loeb Conference Room located in the Columbia University Medical Center.

Attendance is limited to 30 people so RSVP ASAP (emailing cb2280@columbia.edu) if you're interested!

Other planned roundtables:

Adults with Celiac Disease
Tuesday, October 6, 2009

Teens and Adolescents with Celiac Disease
Tuesday, November 3, 2009

Study: Celiac Disease and Autism

The Focus Might Surprise You

A bunch of studies related to autism, gluten, and/or celiac disease seem to be in the works, but so far it appears that not many have made it very far into the public eye.

Now the July 6 online edition of Pediatrics includes an international study that links autism with celiac disease, but perhaps not in a way that many people might have anticipated.

The study found, in part, that the children of mothers with celiac disease were more than three times more at risk for autism, reports HealthDay reporter Steven Reinberg,

So what does this mean in terms of treating autism with a gluten-free diet? The basic GFNYC stance remains the same: Before putting a child on a gluten-free diet, simply have the child tested for celiac disease by an informed pediatrician who understands that, depending on the age of the child, the serum test criteria for child diagnosis may be slightly different than those for adult diagnosis. (For infants and anyone else with neurological disorders, the anti-tissue antibodies may not be as important as the anti-gliadin antibodies.) Should the results be positive and the child go on a gluten-free diet, much improvement might result—and compliance with the diet can be monitored with using the original blood tests as a baseline.

To complement this testing, mothers (and fathers) might want to have themselves tested too.

The estimated prevalance of celiac disease in the general population is about 1:133—and possibly increasing, although most people remain undiagnosed. (Autism is slightly rarer in the United States, at about 1:150.) Among children with celiac-related developmental problems including failure to thrive, short stature, and dental enamel and tooth growth issues, it might be safe to say that they may be even more likely candidatest to be tested for celiac disease.

Certainly first- and second-degree relatives of people with celiac disease are much more likely to have the condition themselves. (The odds are about 1:22 and 1:39, respectively.)

More data can be expected over the coming months. But for now, if you're ready to put a child on a gluten-free diet, seize the opportunity to test for celiac disease first. Once a patient is gluten-free, testing for celiac disease and monitoring for dietary compliance becomes more difficult.

And, if your child has been diagnosed with autism, consider getting tested for celiac disease yourself. It could help to clarify some significant family health issues.

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).

REPORT: CELIAC DISEASE REVERSED AFTER STEM CELL TRANSPLANT

The October 2007 issue of Pediatrics—the official journal of the American Academy of Pediatrics—offers a case report entitled "Correction of Celiac Disease After Allogeneic Hematopoietic Stem Cell Transplantation for Acute Myelogenous Leukemia."

It's a fascinating glimpse into the world of Hematopoietic Stem Cell Transplantation (HSCT). Did you know that, as the authors note, there are documented cases of patients developing celiac disease due to stem cells from donors who have celiac disease, but that this case report might be the first to describe a "cure" of the condition due to a stem cell transplant? Or that there has been documentation of improvement or stabilization of systemic lupus erythematosus, rheumatoid arthritis, multiple sclerosis, and Crohn's disease after stem cell transplantation?

The report concludes

Although we do not, at this time, advocate allogeneic HSCT as the definitive treatment of CD, the decreased morbidity and mortality associated with the use of reduced-intensity stem cell transplants may someday allow HSCT to be an acceptable alternative to a lifelong gluten-restricted diet, which, at best, is extremely difficult to remain adherent to for life. Whether HSCT will reduce the purportedly increased risk of enteric malignancy in this population remains unclear.

My reaction to this is mixed. I'm fascinated by the thought that HSCT might reverse celiac disease, but I'm also skeptical about this isolated case. There have been tales of remission before, especially for people in this patient's age group. Further monitoring and more research should shed light on what sounds like a very promising medical development.