MAYO CLINIC ANNOUNCES NEW DIAGNOSTIC ROUTINES

Mayo Clinic recently issued a communiqué announcing new standards and new tests for diagnosing celiac disease and monitoring treatment on a gluten-free diet. [PDF]

The guidelines and diagnostic algorithms described in the announcement can be extremely useful in helping doctors figure out whether patients have celiac disease. There is even a set of recommendations for diagnosing patients who are already on gluten-free diets. It's still advisable for patients to be on gluten-inclusive diets for a significant stretch leading up to the diagnostic period ("Serology may be falsely negative in patients who have already reduced the gluten in their diet," says the announcement), but it's good to have access to a backup strategy clearly outlined by Mayo Clinic (which does market its own tests).

The announcement states, "There are no typical celiac disease-specific symptoms; most people with the disease have general complaints such as intermittent diarrhea, abdominal pain, and bloating." But it does list numerous "signs and symptoms of celiac disease."

Gastrointestinal

Anorexia
Chronic diarrhea
Bloating
Vomiting
Constipation
Pale, foul-smelling stool
Lactose intolerance
Abdominal pain
Ulcers

Nongastrointestinal

Failure to thrive in infants
Anemia
Thyroid disorders
Chronic fatigue
Unexplained short stature
Depression
Irritability
Seizures/neuropathy
Recurrent fetal loss/infertility
Delayed menarche
Early menopause
Osteoporosis, osteopenia
Oral sores
Tooth discoloration or loss of enamel
Vitamin deficiencies
Myocarditis
Hyposplenism
Pulmonary hemosiderosis

Also of note:

"Up to 10% of untreated celiac disease patients may also have negative serology. When serology is uninformative or indeterminate, and there is substantial clinical doubt remaining, HLA [genetic] typing should be performed to help discriminate those patients for whom a diagnosis of celiac disease can be excluded."

"Mayo Medical Laboratories no longer recommends reticulin testing for the diagnosis of celiac disease. The sensitivity and specificity of this test for celiac disease are inferior to the other tests previously mentioned."

"Testing for IgA and IgG antibodies to unmodified gliadin proteins is no longer recommended because of the lower sensitivity and specificity of these tests for celiac disease....New tests for deamidated gliadin IgA and IgC antibodies have replaced the older gliadin antibody tests, which have been discontinued at Mayo Clinic. In a recent study conducted at Mayo Clinic, the sensitivity and specificity of deamidated gliadin antibodies for untreated, biopsy-proven celiac disease were comparable to tTG antibodies."

Thanks to Diane Hosek for the lead.

CLASSIC EGG CREAM? GLUTEN-FREE!

A Video Triple-Header

Have you heard of an egg cream? It's a classic New York City fountain drink that is famously lacking in eggs and cream.

The ingredients are simple: milk, plain seltzer, and chocolate syrup. As far as that third ingredient is concerned, many consider Fox's U-Bet Original Chocolate Flavor Syrup to be the flavoring of choice—and it is gluten-free!

Recipes for making an egg cream vary. Even Fox's offers more than one set of instructions. On the container, the directions for making a New York Egg Cream are

In A Tall Glass Pour 1/2 Inch of u-bet, 3/4 Inch Of Whole Milk, Add Carbonated Water & Mix Briskly.

But the Fox's website offers this variant as the way to make The Original Brooklyn Egg-Cream:

* Take a tall, chilled, straight-sided, 8oz. glass
* Spoon 1 inch of U-bet Chocolate syrup into glass
* Add 1 inch whole milk
* Tilt the glass and spray seltzer (from a pressurized cylinder only) off a spoon, to make a big chocolate head
* Stir, Drink, Enjoy

No matter your approach, what you should end up with should resemble a chocolate milk spritzer with a creamy foam head, or an chocolate ice cream soda without the ice cream (but with a creamy foam head). An egg cream is more substantial than plain seltzer but not as heavy as a chocolate shake, a refreshing thirst-quencher that will connect you with generations of kids (and adults) who bellied up to counters to enjoy this local specialty during the age of the soda fountain.

Here's a clear and simple demonstration of how to fix yourself an egg cream.



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And here's video of a guy getting an egg cream at Eisenberg's Sandwich, the classic Madison Square coffee shop famous for its tuna melts—which are, alas, not gluten-free. In the latter part of the video you can see the making of another classic: the lime rickey. But I'm not ready to go into the nearly infinite varieties of that drink now!



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And if you need any more proof of how cool egg creams are, here's Lou Reed singing "Egg Cream," complete with mentions of Fox's U-Bet!



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RECENT STUDIES

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

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

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

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

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

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

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

REMINDER: JOAN'S GF GREAT BAKES

As mentioned previously, amazing bagelmaker Joan's GF Great Bakes plans a grand opening celebration for its new facilities at 1905 A Bellmore Avenue in Bellmore, Long Island (516-804-5600) from 11am to 3pm on Sunday, June 29, 2008.

A half-mile walk or ride north of the Bellmore LIRR station, the event is on the schedules of the New York City Celiac Disease Meetup Group (NYCCDMG) and the Long Island Celiac Disease Meetup (LICDM).

As you may know, Joan's bagels (now sold in plastic bags rather than hard plastic containers) come frozen and require about 22 minutes of baking. So bring coolers suitable for traveling with them or any other available products, including English muffins that are free of eggs and dairy as well as wheat. I don't know how much of Joan's stock will be available, but you probably can't go wrong showing up early.

Can't make it to the grand opening? Joan's products recently became available in New York City at Health Nuts stores in Manhattan (1208 2nd Ave
New York, 212-593-0116) and Queens (211-35 26th Avenue
Queens, 718-225-8164). She also maintains lists of her New York and non-New York retailers. And you can sometimes find Joan as a vendor at support group meetings and other events in the greater metropolitan area. Here she is at last year's Long Island Vendor Fair.


















Photo: David Marc Fischer

S'MAC ATTACK!

The East Village mac-and-cheese haven S'MAC will sell its gluten-free Nosh All-American ("a tasty blend of American & Cheddar cheeses") for $2 (it's normally $5.75) on Tuesday, June 24, 2008, as part of its second birthday celebration!

Happy Birthday, S'MAC—and thanks to Erin at Gluten-Free Fun (and the New York City Celiac Disease Meetup Group (NYCCDMG)) for spreading the inflation-beating word.

Specify that you want the gluten-free version (the regular is $1) and remember: The breadcrumbs at S'MAC are always gluten-free (made from corn flakes)!

GLUTEN MADNESS! (A VIDEO DOUBLE FEATURE)

I love the expression of donut envy that you eventually see in this video.

Craving a forbidden food can definitely push someone right to the edge.



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If you've got a favorite gf donut, feel free to share!

SHAMELESS SHIRT PROMOTION

Some people think that being gluten-free is tough. But do you know what is really challenging about the diet? Spelling the words related to it!

Really. Take it from a blogger. Just when you feel you're on top of gastroenterologist, along comes endomysial to throw a wrench in things. Then there's little gliadin, big ol' transglutaminase, and even the otherwordly xanthan to chew on. And don't even get me started on the whole celiac-coeliac rivalry. Too much has already been lost over that dispute!

At least we don't have to bother spelling spelt.

In order to enhance your gluten-free spelling ability, we at the Gluten-Free NYC Boutique recommend learning the gluten-free alphabet, available in assorted items including shirts...
















...mousepads...

















...and magnets!

















And we still can't get over this magic moment from the recent Scripps Spelling Bee in Washington, DC. That's Sameer Mishra, this year's champion.



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A REPORT FROM DR. ALESSIO FASANO

On Medscape you can find Dr. Alessio Fasano's article "News on Celiac Disease: Where Are We? Where Are We Going?". This report summarizes developments in celiac disease research as discussed at Digestive Disease Week 2008.

Highlights:

"Celiac disease is now considered an autoimmune disorder triggered by the ingestion of gluten and similar proteins of barley and rye in genetically susceptible subjects."

Three studies suggested that intestinal permeability is also part of the celiac formula, helping to explain why only some people with the genetic disposition test positive for celiac disease.

"A group from Italy showed that the duodenal microbiota of children with celiac disease who were exposed to gluten was radically different from the microbiota of children with celiac disease who were on a gluten-free diet."

Gluten sensitivity (as opposed to celiac disease) "may be related to activation of the innate immune system without the involvement of the adaptive immune response."

An Italian study "showed preliminary data suggesting a protective role for delayed gluten introduction on the onset of celiac disease in genetically at-risk infants."

In at least some diagnostic cases, it might be time to question whether certain blood tests might make a biopsy diagnosis unnecessary.

Work continues on medical therapies for celiac disease.

PLEASE NOTE Dr. Fasano has a significant stake in Alba Therapeutics, which is seeking a medical treatment for celiac disease.

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).

TELEPHONE TRICIA THOMPSON TODAY!

Tricia Thompson (right) is a dietitian with expertise regarding celiac disease and the gluten-free diet. Currently serving on the dietary advisory board of Gluten-Free Living, she notably studied cross-contamination in popular brands of oats. Today she's slotted to be interviewed at 3pm EST today on Get Fit Radio with Shannon and Rob Yontz .

Thompson welcomes questions via the toll-free number 866-472-5792. Even if you happen to miss the live webcast, it seems that you will be able to hear a podcast or read a transcript via the website.

BUSH ADMINISTRATION FINALLY COUGHS UP FDA FUNDING

UPDATE 11 JUNE 2008 Republican Senator Arlen Specter says the Bush administration is "drastically hindering" the FDA's ability to quickly get increased funding.

Salmonella in tomatoes is dangerous, but apparently even a deadly panic-inducing bacterium can have a good side: Its recent outbreak seems to have "persuaded" the Bush administration to request more support for the Food and Drug Administration (FDA).

This is good news here at GFNYC, which covered the troubled state of the FDA in this December 2007 post. As you can imagine, the policy turnaround is important to gluten-free people because the FDA is supposed to play a key role when it comes to ensuring that gluten-free food and medication really are gluten-free as well as safe in other respects. The more that gluten-free food hits the market, the more gluten-free "territory" the FDA will have to cover.

Here's a New York Times report on the matter. A highlight:

The announcement comes after a series of food and drug safety problems led a panel of outside advisers to the agency to conclude that American lives were in danger because the F.D.A. lacked the money, the staff and the scientific expertise to protect them.

House Democrats have held 14 hearings over the past 17 months to highlight the agency’s shortcomings and urge the administration to propose additional money to address them, requests the administration has refused until now.

"Tonight’s admission by the F.D.A. that they need $275 million to shore up their broken system is a step in the right direction," Representative Bart Stupak, Democrat of Michigan, said Monday night.

And here's a Wired report with attitude.

THE BOOMING GLUTEN-FREE FOOD MARKET

Journalists and food marketing gurus continue to tout the booming gluten-free market, as evidenced by the Annys Shin's Washington Post cover "Food Allergies Trigger Multibillion-Dollar Specialty Market", which comes complete with a photo including gluten-free Rice Chex and Mi-Del Arrowroot Cookies.

Some article highlights:

The market for food-allergy and intolerance products is projected to reach $3.9 billion this year, according to Packaged Facts, a New York research firm. And the market for gluten-free foods and drinks is expected to hit $1.3 billion by 2010, up from $700 million in 2006, according to research firm Mintel....


"Rice Chex . . . was truly our effort to meet the needs of these consumers," said Kevin Farnum, director of sanitation, quality and regulatory operations for General Mills. "We know there is a great demand among consumers to have free-from labeling."

Other major food manufacturers such as Kellogg's and Campbell Soup also sell products safe for people with food allergies and celiac, but they have been more cautious about embracing the free-from claim. Unlike with organic products, there are no government standards for what "free-from" means.

The steps General Mills took to insure that Rice Chex was gluten-free also illustrate how hard it can be for a large manufacturer to do so. In addition to tweaking the recipe, the company had to review its production process, from the time the rice is harvested to when the cereal is packaged, to be certain that gluten would not get into the product....


The National Association for the Specialty Food Trade [NASFT], a New York trade group, estimates that 300 of its 2,800 members offer more than 7,000 no-allergenic products, compared with five years ago, when about 50 members did, spokesman Ron Tanner said.

Increasingly, their customers don't necessarily have food allergies or celiac. They just think they do. "As much as 28 percent of U.S. citizens believe they are intolerant to some foods," said Mintel spokeswoman Joanna Peot. "This trend towards self-diagnosis has widened the 'free from' market from those who have to avoid certain foods to those who make a lifestyle choice for whatever reason."

MACAROON MACHINE, MACAROON KING

Here's some fun footage showing how gluten-free Jennies Macaroons are made in Brooklyn under the aegis of "Macaroon King" Arnold Badner, who is now branching out with Omega 3 Energy Bars.

For other food industry footage, check out these buns and these grains.



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SCHOOL LUNCH SURVEY

Want homework? A recently opened survey from the American Celiac Disease Alliance (ACDA) asks who provides gluten-free lunches for students through college.

A major goal of the American Celiac Disease Alliance (ACDA) is to improve the availability and access to gluten-free meals in schools for students with celiac disease. Recently, the ACDA was approached to work on a collaborative project which will help move us closer to achieving that goal. One of the first steps of the project is to determine the level of interest for gluten-free school lunches.

The ACDA has launched a brief online survey to find out who is providing lunch for student's with celiac disease - parents, school, or a combination.

If you have a child with celiac disease attending school, please click below to complete the survey.

Your input is vitally important to demonstrate that our children want and need gluten-free meals at school. The survey will close on July 2, 2008.

Thank you for helping us help our kids!

You can fill out the nine questions here.

GLUTEN-FREE BUSINESS WATCH

Joan's GF Great Bakes seems to be charging forward on gluten-free bagel power! Makers of outstanding bagels and English muffins as well as other ready-to-bake goods including pizza, Joan's recently made inroads into Big Apple health food stores (Health Nuts at 1208 2nd Avenue in Manhattan and 211-35 26th Avenue in Queens as well as Fit Food at 23 Nelson Avenue in Staten Island), made its packaging more convenient, and opened up a new kitchen in Bellmore, New York, where it will host a Grand Opening Celebration starting at 11am on Sunday, June 29, 2008. Members of The New York City Celiac Disease Meetup Group (NYCCDMG) plan to attend.

Another gluten-free pizza maker, Connecticut's Still Riding Pizza, recently got good coverage from News12 Connecticut.



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Want to launch a gluten-free business of your own? The New York Times recently got a behind-the-scenes glimpse at the decision-making behind the launch of "Wicked Good Company, which makes a line of all-natural (no corn syrup and gluten free) gourmet condiments, sauces and dips."

MEANWHILE On the West Coast, Danna Korn and her soon-to-be hubby Bryan Van Noy have launched SonicBoom, a firm that consults with corporations to improve employee health. It just got a write-up from the San Diego Business Journal Online.

Thanks to Michael Thorn for the SonicBoom lead.