Alessio Fasano Article in Scientific American

Dr. Alessio Fasano's substantial article "Celiac Disease Insights: Clues to Solving Autoimmunity" is in the August 2009 Scentific American.

Have at it!

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

Giving Blood

I just got a postcard inviting me to donate blood and receive of a pair of Mets tickets in the process. I did this last year, and it went very smoothly.

The details:

Donation on Thursday, July 23, 2009
10:00am through 5:00pm
Citi Field First Base VIP Entrance
Flushing, NY

People with celiac disease are qualified to give blood, though of course they are still subject to standard requirements. For instance, you must be between 16 and 76 (and have written consent if you're 16 and a doctor's note if you're 75 or older). Your weight must be at least 110 lbs. You should bring your ID to the event. You should eat and drink before donating, and (sorry, hipsters) you must not have tattoos or piercings less than a year old.

You can call 1-800-688-0900 for eligibility requirements.

Bringing your own snack and drinks should help with the "refilling" part of the process.

Starbucks: Back to the Drawing Board

The Saga Continues


















Starbucks has put considerable effort into serving gluten-free food, but it hasn't seemed happy with what it has produced.

First, in April 2007, there were the brownies that were test-marketed in New York City.

Then came the months and months of research and brainstorming that resulted in the May 2009 unveiling of the Valencia Orange Cake.

And now the saga continues with the discontinuation of the orange cake—after fewer than three months!—and its replacement with Kind Fruit & Nut Bars.

Photo: David Marc Fischer

Shameless Shirt Promotion

This Women's V-Neck T-Shirt is just one of many items available at The Gluten-Free NYC Boutique!

Gluten-Free Tasting Day

@ Whole Foods Union Square

From the store calendar:

Monday, July 13th
Gluten Free Tasting Day

11 a.m. - 7 p.m. FREE!

Join us for our very first Gluten Free Tasting Day. Representatives from Attune, Glow Gluten Free, Enjoy Life Foods, Bakery on Main and Gilbert's Gourmet Cookies will be on hand to sample their gluten free delicacies.

Chef Juan Pablo will be demonstrating a signature summery gluten free dish as well.

Thanks to Myra for the twittery tip!

Celiac Disease Prevalence and Mortality

Dr. Joseph Murray Speaks

Word continues to spread about the recent Mayo Clinic findings on mortality and the growing prevalence of celiac disease.

Here's Dr. Joseph Murray of the Mayo Clinic discussing the findings.



Source (4:25)

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.

Lindsey Ellerson Report on ABCNews.com

News Report on Prevalence Studies; GMA Story on Being GF

Yesterday ABCNews.com producer Lindsey Ellerson posted "Living With Celiac Disease: One Woman's Story." Subtitled "Gluten Intolerance Increasingly Common, According to New Mayo Clinic Study," the article covers a lot of ground: It profiles Vanessa Maltin, reports on the recent Mayo Clinic study on prevalence and mortality, and includes the very important message, "Celiac disease now affects nearly one percent of the U.S. population, [Dr. Joseph] Murray told ABC News, but the vast majority of people living with celiac disease, do not know they have it."

Also of note is the tag line for the article: "The author of this article was diagnosed with celiac disease in 2004." So hey, Ms. Ellerson (right): Thank you for being "out" as a gluten-free newsperson!

Ellerson shared her own story in the May 9, 2007 Reporter's Notebook article "Top Chefs Support Gluten-Free Living."

My personal experience with celiac disease involved only unprovoked fainting spells that occurred periodically during my third year of college while studying abroad in London.

After numerous unexplained episodes of passing out on the Tube, at the Tower of London and while touring Trafalgar Square, I flew home for some medical tests.

I soon learned I was so severely anemic that I would require a blood transfusion if I wanted to return to England to complete the semester. I remained in the United States and after three months of dizziness, lack of energy and nausea, doctors were able to make the diagnosis of celiac disease.

The online package also includes a May 12, 2009 Good Morning America segment on "What you can eat if you have to go gluten-free." I'm not so keen on this tie-in with Elisabeth Hasselbeck's book The G-Free Diet featuring dietitian Ashley Koff (described as "a contributor" to the book). It's not hard to see connections, as Koff, like Hasselbeck, seems very eager to broaden interest in being gluten-free to a very broad audience, as if finding the millions of undiagnosed people with celiac disease wouldn't be enough of an achievement at the moment. True, Koff says that people curious about their symptoms should see their physicians ("that's critical")...but then she goes on to talk about autism, sensitivity, and intolerance—subjects that aren't necessarily likely to get much validation from conscientious physicians at this time. Like Hasselbeck, Koff also tries to seize on a weight-loss angle for the diet. Furthermore, she touts a probiotics line that she works with, vaguely explaining that it is the only one "clinically shown to address all of the digestive problems." It all adds up to overselling, in my opinion.

Let's hope that, with informed newspeople like Lindsey Ellerson, ABC will develop and retain sources such as Dr. Murray and dietitians affiliated with celiac disease centers and not feel as much of a need to build up The G-Free Diet, which is more of a ABC celebrity book than a reliable health book.

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.

Media Round-Up

Or, A News Flurry in Early Summer

Mark Sanford? Michael Jackson?? Sarah Palin???

We know what's really important here.

Newsday's website recently posted the Harvard Health Letters article "Getting out the gluten" (June 30, 2009) —an excellent overview of celiac disease. My only quibble would be with the very end, which implies that some restaurant foods are inherently gluten-free; it's still better to check ingredients rather than assume that you know the recipes and cooking methods a chef uses.

CBS's Jonathan LaPook's "Breaking It Off With Your Doc" (July 2, 2009) lists reasons to switch to a new physician. Number 8 ("Your doctor gets annoyed by questions.") uses celiac disease in its case study:

Not only are patients entitled to careful consideration of questions, those questions may provide doctors with important clues. "Why do I get a stomach ache every time I eat a slice of toast?" may lead to the diagnosis of celiac disease, a condition in which gluten - a component of wheat, rye, and barley - is toxic to the body. If a doctor doesn't immediately know the answer, a perfectly good response is, "I don't know but I'll research it and get back to you."

At The New York Times, Tara Parker-Pope picked up on the recent Mayo Clinic prevalence and mortality study and also fielded some of the comments.

Last but not least, Ilan Brat's The Wall Street Journal article "For General Mills, Wheat-Free Items Are Tricky to Make, Cheap to Market" (July 2, 2009) discusses how GM apparently limited its advertising budget for its new gluten-free Chex and Betty Crocker products by counting on gluten-free community buzz to spread the word. (Note to General Mills: It looks like the strategy worked with Chex, but the Betty Crocker products don't seem to be finding their way onto many supermarket shelves in NYC.)

Incidentally, "Atlanta Gluten-Free Food Examiner" Tiffany Janes was totally on top of the General Mills marketing angle in her post "General Mills calling all bloggers" (July 1, 2009). Nice going, TJ! And NY1 morning anchor Pat Kiernan showed impeccable good judgment in taking note of the Wall Street Journal article on the July 2, 2009 of "In the Papers." Pat, if you're reading this—and I know it's possible—please remember:

Celiac disease affects an estimated 1% of the United States population—that's about 3 million people—but an estimated 2.9 million of those people remain misdiagnosed or undiagnosed. Furthermore, the average time it takes for a diagnosis is estimated to be about 10 years. That means that millions of people may be suffering the symptoms of celiac disease and searching for answers but not getting proper testing, diagnoses, and treatment, which would mainly consist of going on a strict gluten-free diet.

Study Finds Celiac Disease Increasing in U.S.

And GFNYC Wonders Whether Breastfeeding is a Factor

A recent Mayo Clinic/University of Minnesota study, "Increased Prevalence and Mortality in Undiagnosed Celiac Disease" (Gastroenterology, July 2009), concludes that "During 45 years of follow-up, undiagnosed CD was associated with a nearly 4-fold increased risk of death. The prevalence of undiagnosed CD seems to have increased dramatically in the United States during the past 50 years."

Reports Josephine Marcotty in the article "Study confirms increase in wheat gluten disorder (Minneapolis Star Tribune, July 1, 2009):

The findings contradict the prevailing belief that a sharp increase in diagnoses of wheat gluten intolerance has come about because of greater awareness and detection, and raises questions about whether dramatic changes in the American diet have played a role.

"It's become much more common," said Dr. Joseph Murray, the Mayo Clinic gastroenterologist who led the study. No one knows why, he said, but one reason might be rapid changes in eating habits and food processing over the last half century.

"Fifty years is way too fast for human genetics to have changed," Murray said. "Which tells us it has to be a pervasive environmental influence."

Non-scientist that I am, I'm curious as to whether breastfeeding/formula feeding patterns have been a factor in this apparent change. In the article "Infant Feeding in the 20th Century: Formula and Beikost" (Journal of Nutrition, 2001), Samuel J. Fomon of the University of Iowa includes a chart showing that "commercially prepared formulas began to replace home-prepared formulas" starting in 1950.

And the Swedish study "Breast-feeding protects against celiac disease" (American Journal of Clinical Nutrition, May 2002) took note that

A major finding of this study was the lower risk of celiac disease in infants who were still being breast-fed than in infants who had discontinued breast-feeding at the time when gluten-containing foods were introduced into the diet. The risk was even lower in those infants who continued breast-feeding also beyond the time at which gluten was introduced. Larger amounts of gluten at the time of gluten introduction increased the risk, but for any given amount the type of food given was not important.

This study also noted that

It was suggested as early as the 1950s that breast-fed infants have a later onset of celiac disease, and this view was later shared by others. Furthermore, it was shown in case-referent studies based on prevalent cases that children with celiac disease had been breast-fed for a significantly shorter duration than had referents. However, the question was raised of whether the association of celiac disease with breast-feeding is direct and causal or indirect through postponed introduction of infant formula or a reduced amount of dietary gluten consumed.

Currently, as per this article by Nancy Lapid of about.com, doctors recommend that to prevent celiac disease, at least during infancy, "It is prudent to avoid both early (before 4 months) and late (7 months) introduction of gluten, and to introduce gluten gradually while the infant is still breast-fed, inasmuch as this may reduce the risk of celiac disease, type 1 diabetes mellitus, and wheat allergy."

Here's Dr. Murray on celiac disease.



Source (5:26)