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)

O Canada!

July 1 is Canada Day

Just thought I'd offer a round-up of various items related to our neighbors north of the border....

At this week's Fancy Food Show in New York City, I enjoyed the gluten-free (and egg-free) butter crunch (sample at right) from Toronto's CocoMira.

Quebec microbrewery Les bières de la Nouvelle-France now advertises two gluten-free beers: Messagère pale ale and the new Messagère Red Ale. Judging from the website, it looks like the brewers expect distribution in the United States soon!

Thanks to Saskatchewan dietitian Shelley Case, I'd like to draw your attention to Health Canada's Celiac Disease: The Gluten Connection, a clear, concise, and recently produced overview of celiac disease. (For the inevitable United States comparison, click here to see materials produced as part of the Celiac Disease Awareness Campaign of the National Digestive Diseases Information Clearinghouse of the National Institutes of Health (NIH).)

Here's Health Canada's Celiac Awareness Month 2009 statement (May 4) from Canadian Minister of Health Leona Aglukkaq.

And here's a videotaped May 4, 2009 statement by Ontario politician Yasir Naqvi.



Source (1:29)

GFRAP Expands on Long Island

Adds Restaurants in Nassau and Suffolk

The Gluten-Free Restaurant Awareness Program (GFRAP) recently added two Long Island restaurants to its roster.

Pizza Bistro (4952 Merrick Road, Massapequa Park; 516-797-4747) includes pizza, pasta, and mozzarella sticks among its gluten-free options. Pizza Bistro's GFRAP participation is coordinated with the Suffolk County Celiacs (SCC).

Il Capuccino (30 Madison Street, Sag Harbor; 631-725-2747) is an Italian fixture on the South Fork. Il Capuccino's GFRAP participation is not coordinated with a local group.

Food, Inc.

See It at the Film Forum

Robert Kenner's documentary Food, Inc., currently at the Film Forum, isn't about celiac disease and its one mention of gluten has to do with corn gluten, but it's still relevant to anyone on a medical gluten-free diet (and, for that matter, anyone who isn't).

Food, Inc., which features talking heads Michael Pollan and Eric Schlosser, documents how far food production in the United States has moved from small farms to large and very powerful food corporations. These big businesses, with the help of government subsidies, seem able to deliver mass quantities of relatively cheap food for the masses but their modus operandi includes inhumane treatment of animal stock, bullying of small farmers, workers, and consumers, heightened risks of serious infection, suppression of information, and the increased marketing of junk food (i.e. soda and chips and fast food) rather than nutritious food items.

One part of Food, Inc. that is of interest to the gluten-free is the coverage of two food safety lobbyists who lost a child to contaminated hamburger meat. They have spent years trying to get Congress to approve legislation that would enable the government to shut down plants that repeatedly produce the killer meat. On related notes, the film shows big business interests fighting against consumer-friendly labeling and also touches on how the FDA, USDA, and other agencies that should protect us have actually been weakened over the past decades of government policy-making. This is what our advocates have been up against when lobbying for improved labeling and enforcement of reasonable standards. Will the Barack administration be able to turn around this sickening trend?

Another pertinent section of the film is its suggestion that the food industry tends to solve its problems through complication rather than simplification. The main example has to do with E. coli contamination of meat. The industry seems to want to solve the problem by adding ammonia to mass meat production instead of employing the simpler method of feeding cattle a natural diet of grass (rather than the standard, infection-inducing, artificial diet of subsidized corn). This reminds me of the pharmaceutical industry's investment in gluten-neutralizing medications: I'm all for research and innovation, but I wonder whether there will be significcant downsides to the development of those medications when a simple, gluten-free diet already seems just fine as a treatment. What would be so bad about our society simply making it easier and easier to stay on the diet? (And, once again, where's the investment in getting as many people as possible correctly diagnosed as soon as possible?)

Similar thoughts crossed my mind during the films' extended sequence showing how Monsanto's genetically modified (GMO) soybeans have come to dominate the market in the United States. Monsanto, which acquired a patent on the soybeans, aggressively goes after farmers who resist becoming a part of what has become Monsanto's near-monopoly. Monsanto even goes after farmers whose crops have become naturally "contaminated" (illegally invaded?) by the company's patented soybeans! This part of the movie led me to think about efforts to create GMO wheat and other grains that would be safe for people who are gluten-free. What would be the chance of the "safe" wheat being contaminated by or confused with "unsafe" wheat? What would be the chance of the "safe wheat" patent owner abusing its power like Monsanto does? How much should this path be pursued, when today it is already possible for masses of people to maintain healthy gluten-free medical diets?

Food, Inc. is, ultimately, an advocacy film that calls for its viewers to reverse the bad trends by at least voting with their dollars when they buy groceries. Changing one's food-buying practices can require major adjustment, as those who have switched to being gluten-free already know.

Some images of animal treatment in the film can be hard to take, but the shock is a small price to pay to heighten one's awareness of how foods such as eggs, meat, and milk make come to the table.

Oh—and GFCO participant Stonyfield Farm has a promiment role in the film.

Here's the opening of Food, Inc.



Source (3:30)

Hassett Hassles Hasselbeck?

Lawsuit Breaks Out Over Books

When GFNYC last checked in on Elisabeth Hasselbeck's recently published book The G-Free Diet, it was topping sales charts. Now the book's in the news for another reason: Sue Hassett, author of a book called Living with Celiac Disease, is suing Hasselbeck for copyright infringement and plagiarism, according to TMZ.com.

I'm still making my way through The G-Free Diet, and I haven't read or even obtained Living with Celiac Disease (which Hassett claims was copyrighted in 2008), so perhaps I'm not in a position to offer much insight at the moment. And you know what? I think a lot of the media isn't either. It seems that, at the moment, reporters are basically making hay that anti-Hasselbeck allegations have been made in this letter, even though the allegations as stated don't strike me as very persuasive.

Many of the allegations simply seem to note that both books invoke vaguely similar phraseology without recognizing that the phraseology is common (or at least not surprising) in writings about celiac disease and dermatitis herpetiformus (DH). For example, both books use the phrase "Rome wasn't built in a day." But so does this 2005 message board thread about dealing with DH: "The DH will eventually clear up (especially with the assistance of Dapsone), but it takes time -- his body will take a while to clear up the 'histamine' reaction it has had for the past several years -- Rome wasn't built in a day."

Both books warn about possible cross-contamination from meat slicers. So does a 2005 message board thread: "I would say the thing for you to watch is contamination from the meat slicer in the deli. Even if the meat was gluten-free, you wouldn't be able to account for what was on the slicer, unless they totally cleaned it for you...[.]"

Both books offer lists of symptoms. Why shouldn't they?

Get the picture? Both books almost inevitably seem to repackage advice that was already "in the air" before their dates of publication.

Another example: The letter notes that Hassett's book observes that "Wheat-free is not necessarily gluten-free" while Hasselbeck's book observes "'Wheat-free' does not mean the same thing as 'gluten-free.'" But this truism precedes both books by many years: Jax Peters Lowell's 1995 book Against the Grain advises "wheat-free and all natural do not necessarily mean gluten-free." I am pretty sure that this citation is not the earliest that could be found. At any rate, it's another case of both books parroting typical and sensible information.

But the parroted information isn't always sensible: The Hassett letter also draws attention to the books' similar but unfounded warnings about anti-clumping agents in spices. According to the Hassett letter, her book says that "Some spices have a starch put in so it does not stick together you must find out where the starch is derived. Is the starch from a corn or wheat?" [sic], while Hasselbeck's book (misquoted in the letter) says "Spices: Beware the anticlumping agents added to many commercial herbs and seasonings (including those used at restaurants)—they almost always contain gluten." The problem with this can be found courtesy of the reliable resource Gluten-Free Living.

In comments expressing concern about Hasselbeck's book, Gluten-Free Living's Amy Ratner dismisses the spice advice by rhetorically questioning, "Is it a big deal to incorrectly tell someone struggling to figure out the gluten-free diet for the first time that the declumping agents in spices almost always contain wheat...?" Of course, Hassett and Hasselbeck's "declumping agent" warning (succinctly addressed here) also predates both books, as evidenced by this listserv summary post from 2000, which includes the advice that "one must be careful with spices and seasonings because often wheat-flour and other grains are used in them as fillers, to prevent clumping or as a flow agent, and aren't listed on the ingredients." So this instance strikes me as both books parroting typical misguided information.

Considering the weakness of the Hassett allegations, it's a shame that it has taken the mere launching of this lawsuit to return media attention to Hasselbeck and The G-Free Diet. For the moment at least, a far more important and sober (but less sensational) question would have to do with how reliable the information is in both books, how any errors and inconsistencies might have gotten into them, and how much either author might do to address and correct those problems. These are health-related books, after all!

An even more important question for the media to explore (completely in line with the current interest in health care reform) would be how to correctly diagnose the millions of people who unknowingly have celiac disease. But at present, much of the mainstream media merely seems to be sniffing around for the scent of celebrity scandal while giving relatively short shrift to a persistent and serious health concern that's virtually crying out to be addressed in such a way that positive and significant change will follow.

Thanks to Gawker for the lead.

UPDATE On today's The View, Elisabeth Hasselbeck made a brief statement that the allegations were without merit and that they were being handled appropriately.

S'MAC Anniversary Special

Discounted Mac-and-Cheese All Day Wednesday!

Once again, GFRAP mac-and-cheese joint S'MAC (345 East 12th Avenue, with a dedicated takeout storefront to the east) is celebrating its anniversary by discounting its All-American nosh. This Wednesday the gluten-free version will cost you $2.00.

The rules:

Limit one All-American nosh per person.

Valid for dine-in and takeout only, not for deliveries.

Must eat/pickup in person at the restaurant.

Not valid in combination with other offers.

Not available with multi-grain pasta. [Big whoop.—Ed.]

Not available at our Upper West Side location.

The special does not include the other varieties of mac-and-cheese, but that doesn't mean you couldn't, say, order the Cheeseburger. Look at it there...isn't it tempting?



Video by David Marc Fischer (00:05)

Word: GF Gets Shout-Out in Viral Rap!

"Arlington: The Rap" is a parody video that recently went viral. It's of particular interest to those familiar with life in Arlington, VA, but I suspect that even those of us who haven't been in that 'hood know where GoRemy is coming from...especially when he throws down a line about dropping gluten from his diet (around 1:31)! But who's gonna tell him he can't have his puffed kashi?



Source (3:58)

"Going Gluten-Free at Age 13"

A Segment of NPR's Morning Edition

Here's Allison Aubrey's June 15, 2009 segment (4:00) (plus text and recipes) about a family learning to accommodate a gluten-free diet.

One word of caution: In the text accompanying the piece, a reference to Amy's pocket sandwiches wrongly suggests that they are gluten-free. Still, this is a welcome follow-up to Aubrey's gluten salute of May 2007, "For Most People, Gluten Isn't a Diet Enemy."

Hot and Sour 'Shrooms?

On a whim I thought I'd try the Organic Spicy Shiitake & Vegetable Soup mix by FungusAmongUs. To my surprise, it turned out to be very close to Chinese Hot and Sour Soup!

Since then I've also tried the Organic Smoked Oyster Mushroom Chowder, which calls for cream. I liked it warm, I liked it cold, and I liked it with a little herring added, too.

I found the mixes discounted at Westerly Natural Market, but I'm not sure how long the stock will hold out, or whether it will be replenished.

Shameless Shirt Promotion

Still looking for a Father's Day treat?

Visit The Gluten-Free NYC Boutique for a wide range of gluten-free goods!

Best Doctors in New York 2009

Better for GF Kids than for GF Grown-Ups

As far as celiac disease is concerned, there is not much change from last year in this year's Best Doctors issue of New York magazine: The same five pediatric doctors appear, but no adult specialist receives recognition. And that's a problem: What's a gluten-challenged grown-up to do?

So once again, especially for visitors who come here seeking an informed doctor, I note that Manhattan is home to the Celiac Disease Center at Columbia University (CDCCU), where the adult celiac disease specialists include the founder and director, Dr. Peter Green, who remains a widely recognized authority on celiac disease. (Full disclosure: He is also one of my doctors.)

Regarding the general credibility of the listings, I wrote the following in 2006:

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 again get these five pediatric gastroenterologists:

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

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), Montefiore Medical Center—North Division (Bronx)

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

Regrettably, for the second year in a row, the Best Doctors list continues to leave much to be desired for anyone seeking a non-pediatric celiac disease—or dermatitis herpetiformus (DH)—specialist in New York City.

GF Diet Responsible for GM Turnaround?

General Mills Switch to GF Chex a Possible Factor

Reuters reports that General Mills stock recently increased by 3.6%, with the company optimistic about the months to come.

One reason might be the company's reformulation of some Chex cereals so that they would be gluten-free.

Sales were up 10 percent in the first nine months of the company's fiscal year, with volume increasing 4 percent.

The company attributed that growth to investments in product innovation. Last month, it introduced gluten-free versions of its Chex cereal brand.

Keep your eyes peeled for more gluten-free Chex variations to hit the market—just check the ingredients to ensure that you're buying the right one.

Also, look out for new gluten-free mixes from Betty Crocker, another General Mills concern. If you don't see them and you really want to try them, go ahead and ask your grocer to make room for them! And, if you do see them, feel free to tell us where!!

Thanks to Michael Thorn for the lead to the Reuters article.

LI News and Vendor Fair 2009 Lookback

With Many Thanks to Erin Smith and Gluten-Free Fun

Thanks to Erin Smith at Gluten-Free Fun, I see that the 2009 L. Lodico Walk for Celiac Disease (LLWCD) scored television coverage on NY1.

Also thanks to Gluten-Free Fun, I see that Long Island gluten-free bakery Joan's GF Great Bakes (JGFGB) got very positive coverage in The Washington Post.

And thanks to the message board of the New York City Celiac Disease Meetup Group (NYCCDMG)—which Erin organizes—I see that Joan herself will be at Plainview, Long Island's Get Healthy America (GHA) (148 Manetto Hill Road, 516-931-1900) on Saturday, June 13, 2009.

But Gluten-Free Fun also informs me that before then—tomorrow evening from 7 to 8, actually—Michael Thorn will give a talk about celiac disease at the Wild by Nature (WBN) store in Huntington, Long Island. Having met Michael and heard him interviewed on the radio (here's a recent talk), I think this sounds like a very worthwhile event, especially for GF newbies on LI.

I most recently saw Michael at the 2009 Gluten-Free Vendor Fair on Long Island (GFVFLI). Amidst all the hubbub, I savored the yummy strawberry cake samples from Get Healthy America...


















...and enjoyed talking with Michael and special guest Cynthia Kupper of GIG (below). Don't blame them if they don't seem especially cheery—they were trying to be patient with my photographic skills—or lack thereof!

















Besides the strawberry cake and bagels and English muffins from Joan's GF Great Bakes, my other LI favorites at the fair included the artisanal chocolates from Centerport's Azure Chocolate, crusty bread from Everybody Eats of Brooklyn, cannoli from Mama's of Oakdale, desserts from Buena Sera Restaurant/The Gluten-Free Solution, and the BBQ offerings from Northport's Smokin' Sloe's.

Photos: David Marc Fischer

Things

Hm. I'm not sure how this blank (until now) post got here, but somehow it attracted a comment about the restaurant Opus....

Celiac Disease by Tori Winslow

Congrats to Tori Winslow for winning a Student Educational Video Award for this short documentary (2:35) about celiac disease. (For more on modified food starch, see this note from Gluten-Free Living.)

Vinegar Revisited. Again.

Distilled Vinegars are Gluten-Free, Just Check Others

The dietitian Tricia Thompson, who did the research that measured significant wheat contamination in oat brands including McCann's, recently collaborated with other gluten-aware dietitians in addressing concerns about the possibility of gluten in vinegar.

Their findings—summarized in Tricia's blog post, "Vinegar: When Is It Gluten-Free?"—were generally consistent with research published in Gluten-Free Living suggesting that the vast majority of common vinegars are gluten-free.

The main points:

Distilled vinegar is gluten-free, no matter what the source material may be, because (the ancient and medically reliable process of) distillation separates all proteins from the final product.

"Vinegar" simply listed as an ingredient can be considered safe—made from apples.

Check non-distilled and flavored vinegars. The most common non-distilled vinegar that would be of concern is malt vinegar; some Asian black rice vinegars might also merit concern.

The contributors to this recent statement are all dietitians notable for their expertise concerning celiac disease: In addition to Thompson, they include Cynthia Kupper of GIG, Melinda Dennis of Boston's Celiac Center at Beth Israel Deaconess Medical Center (CCBIDMC), author Mary K. Sharrett of Nationwide Children's Hospital of Ohio (NCHO), Anne Lee (formerly of the Celiac Disease Center at Columbia University--CDCCU), and Pam Cureton of the University of Maryland Center for Celiac Research (UMCCR).

Alice Bast Presentation

Here are excerpts from a presentation by Alice Bast of the National Foundation for Celiac Awareness (NFCA).



Source (9:28)

A Visit to a Fairway

Here's a short promotional video from Fairway that revolves around the store's gluten-free goods. A new Fairway supermarket recently opened in Paramus.

Fiber Tips

Don't Overestimate Fruit, Advises Expert

What are the most effective sources of dietary fiber for those who are on gluten-free and lactose-free diets?

That's the question fiber expert Joanne Slavin answers in a recent U.S. News and World Report blog entry by senior writer Katherine Hobson.

The answer? "Beans and legumes would probably be the most effective. You might also consider cooked or stewed vegetables, which are easier to consume. Generally, fruits are low in fiber and relatively high in calories and sugar, so they're not a great fiber source."

Many thanks for this guidance!

Also: Did you know that beans (and many other gluten-free foods) can be frozen? Thanks to Allergic Girl for the lead!

Happy Birthday to a Human Being

GF Cake for Elisabeth Hasselbeck on The View

Today, for Elisabeth Hasselbeck's birthday, the View host received a Beatlesesque birthday serenade from her brother Ken Filarski plus a gluten-free birthday cake and some empathy from a Daily Kos diarist who wrote:

Although I almost exclusively disagree with the opinions she voices on that program, and frankly find all kinds of entertainment punditry to be damaging to the public discourse, I wish to extend birthday wishes to Mrs. Hasselbeck. Becomes sometimes it takes the appearance of a gluten-free birthday cake on a day-time talk show to remind me of the humanity of those who espouse views opposite my own....

[W]hen her brother came out and sang "Happy Birthday" and the women of "The View" gathered around a gluten-free cake to celebrate Elisabeth's birthday, the sap oozed out of me and I was reminded that Mrs. Hasselbeck isn't merely a talking head but a woman who ages and has genuine health issues....

Her occupation may be sensationalist, her statements on the wrong side of history, but from one human being to another I wish Elisabeth Hasselbeck a happy birthday.

Source (4:52)

SI Advance Notes Gluten-Free Recipe Contest

Pamela Silvestri included this forthcoming Pamela's Products contest in "Creative food minds can make some dough" (May 20, 2009), a short look at corporate food competitions.

L. Lodico Walk Next Sunday

The third annual L. Lodico Walk for Celiac Disease takes place next Sunday, May 31, 2009, at Little Bay Park in Queens.

It's a little different from last year's walk, so be sure to check out the forms in advance.

Here's television coverage tied into another upcoming fundraising walk, upstate in Rochester.



Source (2:50)

Uno Chicago Grill to Support the ACDA

From May 25 through May 31, 20% of Uno Chicago Grill purchases made with this voucher will benefit the American Celiac Disease Alliance (ACDA), which advocates in Washington, DC.

If you want to be part of this fundraising effort, contact your destination Uno Chicago Grill to confirm that it is a participating restaurant. And don't forget that voucher!

Here's a gluten-free pizza coupon— and here are the gluten-free offerings at Uno Chicago Grill.

And here's a CNBC item about Uno Chicago Grill's gluten-free pizza. What do you think about the pizza? Is it delicious, or is it cardboard??



Source (1:21)

GF Jocks: Sarah Jane Smith

Not very long ago, LPGA golfer Sarah Jane Smith received a diagnosis of celiac disease, went on a gluten-free diet, and saw her game improve. From the LPGA website:

Fortunately, the dietary change has contributed to her success on the course, which has included two runner-up finishes on the 2008 Duramed FUTURES Tour. She now serves as an ambassador for the National Foundation for Celiac Awareness (NFCA)....


"I changed my diet because Celiac disease runs in my family. Earlier this spring, I stopped eating wheat or gluten. I cut out bread and pasta and it's really helped. I feel better on the course and the new diet has given me more energy. It requires a lot of planning, though. You can't just grab a sandwich when you go out on the course. Now, I eat a lot of gluten-free energy bars, fruits and nuts, and rice cakes with wheat-free peanut butter."

Here is a PSA from Sarah and the NFCA, where she is one of the Athletes for Awareness.



Source (00:29)

Shameless Shirt Promotion

Wanna promote Celiac Disease Awareness? Consider this button!















Wanna celebrate Father's Day? Consider this shirt—and other items at the Gluten-Free NYC Boutique!





















The Gluten-Free NYC Boutique—putting the GF in GiFts!

A Hasselbeck Bump?

Book to Debut on New York Times Best-Seller List

This post isn't about Elisabeth Hasselbeck's little baby bulge.

It's about the impact that the gluten-free View co-host (shown at right at recent Borders book event) might have in boosting awareness of celiac disease.

Consider the results for "celiac" and "gluten" on Google Trends. In both cases you can see spikes representing searches for those words in early 2007 and now. The older spike probably represents Hasselbeck's January 2007 "coming out" as being gluten-free on The View as well as the rollout of Anheuser-Busch's Redbridge beer and, ultimately, the very hot news story about melamine in gluten in pet food.

But how about the current spike, which coincides with the release of Hasselbeck's book The G-Free Diet? Granted, May is also a Celiac Disease Awareness Month, but I have a feeling Hasselbeck's book, currently number two on The New York Times Hardcover Advice best-seller list, has a lot to do with people searching for "celiac" and "gluten."

A week ago, I attended Hasselbeck's reading at the Borders at Park Avenue and 57th Street. Coffee was served...
















...and there were samples a-plenty of the new Starbucks Valencia Orange Cakes!


















Here she is speaking...

















...and here she is signing books.

















So how was the event? It reminded me of the old New York City CSA support group meetings, which have not been held for several years. About 60 people attended, filling the area of the bookstore set aside for the event. After Hasselbeck told her story and invited questions, the question-askers (one had just gotten diagnosed—and another had gotten a diagnosis after his autism spectrum disorder child tested positive for celiac disease!) sought guidance on subjects ranging from getting diagnoses to finding friendly restaurants. Hasselbeck fielded the questions reasonably well but the answers were not as comprehensive as they might've been had the gathering involved a panel of people sharing the wisdom of their pooled experiences. Yes, this was a book-signing, not a support group meeting—but this was a book event that attracted people looking for support and validation that is not as available in New York City as it is elsewhere in the greater metropolitan area.

I also note that Hasselbeck continued to offer useful and accurate information mixed in with remarks that weren't as useful and accurate. When asked about restaurant options in the Big Apple, she reeled off a bunch of options but never mentioned the Gluten-Free Restaurant Awareness Program (GFRAP)'s website (let alone the GFNYC restaurant listings) as as an up-to-date resource for that kind of information. When it came to vinegar, she basically warned against it despite the research by Gluten-Free Living that showed that, with the exception of malt vinegar, all simple vinegars are gluten-free. "Vinegar Contains Gluten" is actually one of persistent myths identified in Celiac Disease: A Hidden Epidemic, co-written by Rory Jones and Dr. Peter Green, Hasselbeck's own doctor (and mine):

Any vinegar that is distilled is gluten-free. Malt vinegar is not distilled and contains gluten. It is important to read labels to see what other ingredients may be in a product that contains vinegar. But the distilled vinegar itself is not an offending ingredient.

Spikes in interest about celiac disease and gluten-free dieting provide gluten-free support networks with opportunities to provide reliable answers to the public and find the many people who remain undiagnosed. Hasselbeck and The G-Free Diet represents one of those opportunities—but no single book or individual should be expected to provide all of those answers, which in some (or many) cases may evolve over time. Those seeking support in New York City might benefit from the resources listed here and here. I hope to see the resources grow as word spreads in the times ahead.

BONUS For more evidence of a Hasselbeck bump, check out this segment from Sacramento TV station KCRA.



Source (3:42)

Photos: David Marc Fischer

The Early Show Boosts Awareness

Yesterday on The Early Show, Harry Smith and nutritionist/TV host Emma Buckley discussed celiac disease and its treatment—a gluten-free diet. Here's the segment. (I removed the embedded video due to technical difficulties.) It's good coverage, though Buckley (who recently interviewed NFCA spokesperson Heidi Collins of CNN) overrates the efficacy of FDA oversight. Also, the accompanying PDF probably should have omitted mentions of stamp and envelope adhesives due to lack of evidence that the gum includes gluten. (I also question the warning about distilled alcohol—as the Canadian Celiac Association (CCA) put it, "Distilled alcoholic beverages such as gin, vodka, scotch whisky and rye whiskey are made from the fermentation of wheat, barley or rye. Since they are distilled, they do not contain prolamins and are allowed unless otherwise contraindicated.")

Dietitian Shelley Case Cautions Readers of The G-Free Diet

Today Yesterday, registered dietitian Shelley Case issued a press release advising people who might consider adopting a gluten-free diet following the publication of Elisabeth Hasselbeck's The G-Free Diet.

Highlights:

"It's a myth that everyone should be on a gluten-free diet," says Case. "Just because alternative health practitioners, personal trainers and celebrities are jumping on the gluten-free bandwagon, doesn't mean it is right for everyone." Case worries that too many people will look to the diet to solve a multitude of problems such as arthritis, ADHD, elevating energy levels and even weight loss. "Contrary to popular buzz, the GF diet is not a panacea diet" says Case....


Case refutes the common myth that a trial gluten-free diet is the best way to determine if you have celiac disease. "Unfortunately a growing number of people are attempting to self-diagnose their own gluten sensitivity without proper medical assessment and nutrition counseling," says Case. "It's absolutely imperative to see a physician BEFORE adopting a gluten-free diet."

Celiac disease is diagnosed by a specific blood test and small intestinal biopsy. Gluten must be present in the diet in order for these tests to confirm the diagnosis.

Without an official diagnosis, people may not be motivated to strictly follow the diet for the rest of their lives or receive further follow up care to monitor for potential complications of the disease that can include osteoporosis and gastrointestinal cancer. Furthermore, their relatives may not get screened for celiac disease if the family member does not have a confirmed biopsy proven diagnosis.

Case worries that many people will try this diet as the latest "fad" because of a celebrity status associated with it. As result, "those with celiac disease may not be taken as seriously in restaurants because everyone thinks it's just a lifestyle choice or trendy obsession." Even small amounts of gluten can damage the intestinal tract. Because celiac disease is a serious lifelong disorder, it should be accorded the respect it deserves.

Other responses to The G-Free Diet can be found here.

Gluten-Free Coverage at LoHud.com

Includes Input from Dr. Peter Green and Two Regional Bakers

LoHud.com (which covers the Lower Hudson Valley) recently ran two Linda Lombroso articles having to with celiac disease and the gluten-free diet.

The longer article, "Eating gluten-free" (May 11, 2009) features two area bakers: Three Dogs Gluten-Free Bakery founder Karen Miller (current head of GFRAP in the greater metroplitan area) and Good Day Sunshine founder Pam Goldberg as well as Dr. Peter Green—Elisabeth Hasselbeck's celiac specialist and mine, too. Lombroso mentions a study co-authored by Green that documented the greater cost of a gluten-free diet and writes

Outside the United States, some patients diagnosed with celiac disease get a prescription for gluten-free foods, says Green. "In areas of Europe, like in Italy, the government encourages diagnosis, and all around the world, there are many countries in which gluten-free food is part of the national health care and the food is provided free."

Keep that possibility in mind when you're thinking health care reform!

The other article, "Celiac disease: a hidden epidemic?" (May 8, 2009), revolves around Dr. Green's book of the same title (sans question mark). Green encourages people who suspect that they have celiac disease to consult with their physicians about getting tested regardless of their symptoms.

"I see patients who say they asked their doctor to have the blood test, and they say: 'He said I couldn't have it because I was too fat or too tall or I didn't have diarrhea or I wasn't Irish or I wasn't Italian or I was Jewish,' because there are a lot of misconceptions about what celiac disease is like. Most people don't have classic symptoms," he says.

"If a doctor says he won't test for it, you should find a new doctor, because that just means he doesn't know the tremendous variability in the ways it can present."

Here's information about diagnosing celiac disease.

Everybody Loves Chris's Favorite Pasta!

It's true: Tinkyada makes outstanding gluten-free pasta—especially in terms of consistency and cost!



Source (2:13)

Hasselbeck on Rachael Ray and Larry King Live

Plus Reviews and Reactions

Here's a summary of Elisabeth's appearance on the Rachael Ray Show, where Rachael gushed about BabyCakes cupcakes. And here she is on Larry King Live. As you can see from the Larry King transcript, the interview covered a range of subjects over more than 17 minutes, with the diet coming up around the mid-point.

In related news, the very respectable Celiac Disease Foundation (CDF) expressed concern about inaccuracies in Elisabeth's book and appearances. It's true that Elisabeth has repeatedly called celiac disease an allergy (even though people often call it an allergy, it is technically an autoimmune disease), but when Larry King asked her about that she replied, "It is an autoimmune disease."

It's becoming clear, I think, that Elisabeth's book campaign includes risks as well as benefits. She's raising awareness about celiac disease but her language isn't entirely precise and some of her information is spotty or out-of-date. As has been the case in the past, it is up to organizations such as the CDF and the rest of the gluten-free community to try to separate the wheat from the chaff (er, the gluten from the diet?) and do our best to clarify what needs to be clarified.

Here are reviews of The G-Free Diet from Nancy Lapid, Sure Foods Living, and At Home With Books.