AND NOW FOR SOME WORDS FROM DR. JOSEPH MURRAY...

Dr. Joseph Murray, one of the nation's prominent authority on celiac disease, appears in this Mayo Clinic overview of celiac disease.

Dr. Murray makes two points that deserve special attention. First, he says that small amounts of gluten can result in physical damage even when a patient doesn't notice any symptoms. Second, he says that, because of the hereditary component of celiac disease, close relatives of people diagnosed with the condition should also be screened. I mention the first point because many people may rely too much on symptom detection as a way of guessing whether they've consumed gluten; I mention the second point because it can be difficult to persuade first- and second-degree relatives to participate in conventional testing for celiac disease. Perhaps the voice of authority in this video can help to make the case.

The Mayo Clinic's web materials on celiac disease can be found here.



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WHO WE ARE TODAY

An Italian study finds that celiac disease is nearly twice as frequent among females than males. The study appeared in The American Journal of Gastroenterology (AJG) (April 2008).

The June/July issue of Living Without includes an interview with Dr. Alessio Fasano, who was instrumental in coming up with the "1 in 133" study that found that celiac disease was far more prevalent in the United States than previously thought. Fasano offers the following update:

Keep in mind that in 2003 when the study was completed, there were only about 40,000 people diagnosed with celiac disease in the United States. Since that time, due to increased awareness, the rate has doubled every three years. Today, we’re close to 100,000 diagnosed—and counting. We estimate there are about 3 million people in the United States with this disease. Think about that. There is no other pathology that is so frequent—not Crohn’s disease, cystic fibrosis, ulcerative colitis, multiple sclerosis, rheumatoid arthritis. Nothing even comes close.

So...2,900,000 Americans with celiac disease may still be undiagnosed.

CELIAC SURVEY RESULTS

Last month, cookbook author Connie Sarros shared survey results gleaned from 589 respondents in a variety of locations. The survey doesn't strike me as very formal or scientific, but I still think something can be gained by considering the results.

Asked what is the most difficult thing about being celiac, the biggest plurality weighed in with eating out (105). Runner-up responses were eating at friends' homes (24) and gluten-free foods have a bad taste (20).

The most difficult situation: eating out at restaurants (109) followed by weddings and events where there are set menus (35) and those darn business meetings (25).

Non-sushi eaters (223) outnumbered sushi eaters (106). (Too bad, I think, as sushi can make eating out a lot easier—as can GFRAP.)

People trying to lose weight (239) outnumbered people trying to gain weight (75) and those lucky people who are happy with their weight (155). Exercisers (293) outnumbered non-exercisers (194).

Post-diagnosis, the most help came from

Internet - 173
Support group - 94
Family member - 51
Doctor - 27
Other - 23
Dietitian - 19
Friend - 19
Nutritionist - 3
I didn't get any help - 1

A question about the top two benefits of being in a support group resulted in the following responses:

We all share information, tips and advice - 71
I don't feel so alone - 29
I get personal support and talk about my symptoms and challenges - 29
We share recipes - 28
We get up to date product information - 27
I feel I am helping others - 21
I go for the social contact - 19
I go because we have vendors and I can buy products and taste free samples - 18
I get the latest medical information about celiac disease - 16
I go because we have speakers regularly - 14
Find out where to buy gluten-free foods locally - 3
I love the support group newsletters and e-mails - 11
Find out which local restaurants are serving gluten-free food - 12
Find out the current food laws - 2
I'm too shy to go to a meeting - 1

Asked if their extended families really understood the gluten-free diet, respondents weighed in as follows:

Yes - 57
Most - 55
Some - 79
Very few - 16
No - 48

Regarding how respondents really feel about the diet, the top answers were positive

62 My body feels so much better. The diet is better than being sick.
38 I am at peace with the diet
33 The whole family is eating so much healthier now

until the fourth place response:

24 Resentful, this diet stinks!

Favorite pre-packaged breads were...None, they all taste terrible! (82). After that came Whole Foods (41) and Kinnikinnick White Sandwich Bread (38) and Local Gluten-Free Bakery (27).

The favorite packaged cake mixes came from the Gluten-Free Pantry (142), followed by Namaste (95) and Pamela's (57).

Connie's new survey can be filled out here.

MY HERO!
















The Staten Island restaurant Tuttoriso joined GFRAP last year on the advanced level, which means that, like Lilli and Loo, it has made an extra investment to assure all that its gluten-free menu is indeed gluten-free. Pictured above is Tuttoriso's delicious Italian hero, which I recently enjoyed with an ice cream soda and some "homemade" baked goodies to go. Among Tuttoriso's strong points are its bakery offerings: breads, cakes, cookies, muffins, etc. You can drop in for a meal, but you can also drop in for something simpler, like a drink or snack.

Another one of Tuttoriso's strong points is its location. A short walk from the ferry terminal as well as Richmond County Bank Ballpark, home of the Staten Island Yankees, the restaurant is very convenient for downtown Staten Islanders as well as commuters and other ferry travelers—especially during the warm weather months.

Have you ever taken the Staten Island Ferry? Currently free, it's a classic "cheap date" of New York City.

You board the ferry in downtown Manhattan. (If you take the 1 train, make sure you're in one of the front cars at the South Ferry stop.)
















On one side of the ferry you can get a great view of the bridges connecting Manhattan and Brooklyn. On the other side, you can get a view of this charming old lady. Even at her advanced age, she's especially photogenic in the morning.
















After about 25 minutes, the ferry arrives in Staten Island. There's something very sexy about the way the ferry makes its landing.
















To get to Tuttoriso, you can leave the ferry terminal to the south and take a right on Richmond Terrace; the restaurant will be on the left. You can get out of the ferry terminal by foot...
















...or I guess you could take a bus one stop. They're timed to receive ferry passengers.

















Here is the Tuttoriso storefront...
















...and here's a funky mural on the inside!
















Did I mention that potato salad is on the menu?
















Here's my favorite Tuttoriso cake so far.
















If you have to wait for the ferry to Manhattan, you can enjoy the beautiful fish tanks in the Staten Island terminal.
















EXTRA Tuttoriso owner Helen also hosts the Staten Island Celiac Organization at the restaurant. The next meeting takes place on June 12. Helen also plans to fill out the restaurant's schedule with an assortment of other special events—I believe gluten-free karaoke might be a possibility!

THE WORLD'S LONGEST GLUTEN-FREE CAKE?

People in Pula, Croatia, celebrated International Coeliac Day with what might be the world's longest gluten-free cake. The video is a long, too, but perhaps it can provide a lot of food for thought as to ways to raise awareness.



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S'MAC!



















I can't quite get over the fact that the latest GFRAP restaurant in New York City specializes in mac-and-cheese. Mac-and-Cheese, people! But I'm trying my best, and I'll continue to visit l'il ol' S'MAC as the unbelievable truth sinks in.

S'MAC really seems to have its act together in terms of serving its gluten-free items. Over the counter you can see an advisory about what is and isn't gf, and how much it'll cost.

Out of the six items I've enjoyed off the S'MAC "recommendations" menu, my favorite is the Cajun: cheddar, pepper jack, andouille sausage, green pepper, onions, celery, and garlic. Each bite of sausage yields a distinctive burst of flavor that still manages to complement the rest of the dish.

Out of the eleven other "recommendations," the choices include 4 Cheese (cheddar, muenster, gruyere, and pecorino), Napoletana (fresh mozzarella, roasted tomatoes, roasted garlic, and fresh basil), Masala (cheddar, American, tomatoes, ginger, onions, cilantro, cumin, and Indian spices), and Buffalo Chicken (cheddar, American, boneless chicken pieces, and hot sauce with bleu cheese optional). But more variations are possible, as you can "build your own" by choosing among 14 cheeses and 17 mix-ins, including tuna, slab bacon, shiitake mushrooms, kalamata olives, and fresh rosemary.

Consider rounding out your mac-and-cheese order with a mixed green salad. (Gluten-free desserts are not yet available.) And even though you might not be able to resist digging into your dish when it's served hot and bubbly, remember that there are rewards to letting a portion of the dish cool down, allowing the cheese to regain its substance and distinctive flavor.

My only wish at the moment is that the dishes come more clearly marked as gf or not gf. I've been told that the gluten-free elbows are small compared to the gluten elbows, but it'd be great to have a clearer indicator of which orders have gluten and which don't. (If you just walked into the restaurant for the first time, ordered gf elbows, and somehow got the wrong order, how would you know? Or if someone forgot to specify gf for you, how would you know?) Not that I've seen or heard about any screw-ups while sampling dishes on three recent visits. I'm just sayin', is all. And remembering a mishap at Jules Thin Crust Pizza.

Read more about S'MAC from CeliacChicks and Gluten-Free Guide.

Photo: David Marc Fischer

DIGESTIVE DISEASE WEEK 2008

If you've had trouble seeing your gastroenterologist this week, the reason might be Digestive Disease Week 2008, currently taking place in San Diego from May 17-22. (Yes, yes...I know that isn't a full week, but don't blame that on me!)

Looking over reports from the event, the news item that strikes me the most is that a study has found that the criteria for diagnosing celiac disease might be too stringent and in need of revision. Currently, diagnosis relies on blood tests and a biopsy. As reported at Science Daily,

Researchers studied 145 patients suspected of having celiac disease to determine if the current diagnostic criteria are too narrow. Seventy-one of the patients were found to be endomysial antibody positive, and of those only 48 met the criteria under the current definition of celiac disease. The remaining 23 patients were divided randomly into two groups. One group was placed on a gluten-free diet and the other continued a regular diet that included gluten.

Patients were biopsied again after one year following their respective diets. Investigators found that the patients on the gluten-free diet were asymptomatic, and that their endomysial antibodies disappeared as did their small intestinal mucosal inflammation. However, the patients on a regular diet continued to experience symptoms. These patients continued to be endomysial antibody positive, and showed further deterioration of the small bowel membrane, mucosal inflammation and gluten-induced lesions in the bowel.

According to Markku Maki, MD, professor of pediatrics at the University of Tampere, Celiac Disease Study Group, Tampere, Finland, patients on the gluten-free diet elected to continue the diet after the yearlong study, and the patients on the regular diet elected to eliminate gluten from their diet and over time became symptom free, endomysial antibody-free and experienced healing of the mucosal membrane.

Researchers believe that over time, patients who are endomysial antibody positive may develop the gut injury that makes up the current criteria for diagnosing celiac disease. "By redefining the criteria for celiac disease, we can treat patients before they begin to experience the most severe symptoms and signs of the disease," said Dr. Maki.

So it seems that there is now documentation that if you have a positive endomysial antibody test (EMA) while not qualifying for a celiac diagnosis under current criteria, you might still show measurable signs of improvement by adopting a gluten-free diet or, conversely, show measurable signs of decline by continuing to eat gluten. In either case, a positive EMA might well justify continued medical supervision.

In the same Science Daily article is an item about the first double-blind test of AT-1001, a drug that Alba Therapeutics hopes will treat celiac disease by keeping gluten from crossing the intestinal mucosa. "Daniel Leffler, MD, clinical research director at the Celiac Disease Center at Beth Israel Deaconess Medical Center in Boston, said that while the subjects did improve, the primary study outcome was not met. But he added that the findings are promising enough that investigators are currently conducting a larger trial over a longer time period," says the article.

Another study covered in the article looked at whether two particular enzymes could help patients digest gluten. This study seems to have shown some promise as well.

Science Daily also reports on the promise of confocal laser endomicroscopy (CLE), which uses a tiny microscope at the tip of an endoscope to provide informative real-time images that can reduce the need to wait up to a week for results. CLE enabled researchers to find 39 cases of celiac disease in 1,771 patients.

ADDENDUM Read more here and here.

"A GLUTEN FREE STATUS QUO"

Today is International Coeliac Day (as Gluten-Free Fun notes. In celebration of this event, here's a recipe for a very special video: Take a gluten-free pizza crust from Rustic Pizza, mix well with High School Musical, and add junior and senior high school students from Newmarket, New Hampshire. Enjoy!



Source (3:59)

SHAMELESS SHIRT PROMOTION

Father's Day is on the way—make sure it's not topless!
















Find gifts for Dads and others at the Gluten-Free NYC Boutique.

Design: Debbie Glasserman

NEWS FROM ACROSS THE RIVER

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

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

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

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

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

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


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


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


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

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

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

NEWS FROM ACROSS THE POND

I've noticed some interesting news from the United Kingdom, where the Queen's subjects waste much time spelling celiac as coeliac.

I know. I know. I shouldn't let this spelling issue distract me from sharing the news that the National Institute for Health and Clinical Excellence (NICE) now advises that patients suspected of having Irritable Bowel Syndrome (IBS) should be tested for celiac disease (or something called "coeliac disease") as part of the diagnostic process. This blog has repeatedly noted that celiac disease can be mistaken for IBS.

This item mentions the NICE guideline and also draws attention to a home screening test for celiac disease, available in the UK, that has been measured to be 96% accurate. It advises users to consult with physicians to confirm the diagnosis.

In another development, Coeliac UK is working with the Hospital Caterers Association "to improve its provision of gluten-free meals." Coeliac UK, which kicked off its Awareness Week "Food Without Fear" campaign today, produced a Coeliac UK Toolkit to provide guidance to food providers in venues such as schools, hotels, airlines, and restaurants as well as hospitals. It has also launched a competition throughout the UK "to create an innovative gluten-free dish," as this item this item puts it. Here's more on the subject.

Jolly good news, don't you agree?

RISOTTO INSPIRATIONS

Back in March, I blogged about a Risotto Challenge to be held in Brooklyn. You can read about the outcome (and possibly get some risotto inspiration) here and here.

And here's a video showing the preparation of a gluten-free Mushroom-Basil Risotto served at O'Reilly's Canungra Valley Vineyards (CVV) of Queensland, Australia. The CVV restaurant seems to be making an effort to include gluten-free foods among its menu items.

Don't fret over catching the ingredients—there's a list at the end of the video.



Source (4:47)


And here is the plating.



Source (00:54)

HAPPY CELIAC AWARENESS MONTH!

Please, oh please, be aware that this month of May is one of two celiac awareness months!

I myself was made aware of this by a press release from the Celiac Disease Foundation (CDF) and Mary's Gone Crackers, which (as you may already be aware) has often provided its crackers at many area events.

The press release says

More than three million Americans are estimated to have Celiac Disease, yet 97 percent of people go undiagnosed. Those with Celiac Disease are unable to tolerate gluten, the common name for the natural proteins found in wheat, barley and rye.

Some common symptoms of Celiac Disease include:

* Recurring bloating, gas, or abdominal pain
* Chronic diarrhea or constipation or both
* Unexplained weight loss or weight gain
* Pale, foul-smelling stool
* Unexplained anemia
* Bone or joint pain
* Migraine headaches
* Behavior changes/depression/irritability
* Vitamin K Deficiency
* Fatigue, weakness or lack of energy
* Delayed growth or onset of puberty
* Failure to thrive (in infants)
* Missed menstrual periods
* Infertility – Male/Female
* Spontaneous miscarriages
* Canker sores inside the mouth
* Tooth discoloration or loss of enamel

Anyone who can identify with one of more of the symptoms listed may have Celiac Disease and should consult a doctor for more thorough testing, which typically starts with a blood test. In addition, anyone who has been diagnosed or has a family member who has been diagnosed with Type 1 diabetes, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, eczema, Sjögren’s syndrome, Peripheral neuropathy, thyroid disease, Dermatitis Herpetiformis, or osteoporosis may also be at risk.

The number of Celiacs is in fact greater than those with Crohn’s Disease, Cystic Fibrosis, Multiple Sclerosis and Parkinson’s Disease combined.

The CDF offers no less than 10 Ways to Raise Awareness. Use them wisely!

Full Disclosure: "Ask Me About Gluten" button designed by Debbie Glasserman Design for the Gluten-Free NYC Boutique

CELIACALENDAR

The Staten Island Celiac Meetup Group (SICMG) is having its next meeting—with pizza—at Tuttoriso on Thursday evening, May 8, at 7:00pm. Indicate your interest at the webpage for the meetup group.

The Greater New York City Celiac Support Group (CSA/USA) will meet at Outback (919 Third Avenue at East 56th Street) on Monday evening, May 12, at 6:30pm. RSVP by calling Merle at 212-662-2464 or Mary Ferry at 212-304-1026.

The New York City Celiac Disease Meetup Group (NYCCDMG) kicks off a Happy Hour at the East End Tavern (1589 First Avenue) on Wednesday evening, May 14 at 5:00pm. Drinks will include Redbridge ($4.50) and Magners ($3.50); pub food will be ordered from Peters'! Indicate your interest at the webpage for the meetup group.

The Westchester Celiac Sprue Support Group (WCSSG) holds an event with nutritionist Anne Roland Lee at DeCicco's (Ardsley) on Saturday afternoon, May 17 from 1:00pm to 4:00pm. Vendors include Everybody Eats and Joan's Gluten-Free Great Bakes.

The 2008 L. Lodico Walk for Celiac Disease takes place at Little Bay Park on Sunday morning, June 1, starting at 9:00am. Proceeds go to the CSA this year. Read about last year's walk here.

The WCSSG holds its annual picnic (weather permitting) at Kingsland Point Park (Sleepy Hollow) on Sunday afternoon, June 22, from noon to dusk. Metro-North's Philipse Manor station is just north of the picnic grounds.

ZAGAT TIME

You've still got time to participate in the 2009 Zagat Survey of New York City Restaurants.

If you register and vote by the May 18 deadline, you can give your favorite restaurant(s) a hand and get yourself a free copy of the survey when it comes out—but not a moment sooner!

S'MAC GOES GFRAP (AND OTHER GFRAP UPDATES)

Restaurants that claim to serve gluten-free food are not all alike. Some independently declare their own food to be gluten-free, while others open themselves up to guidance from the Gluten-Free Restaurant Awareness Program GFRAP.

The latest local addition to the GFRAP roster is S'MAC. This well-liked macaroni-and-cheese joint in the East Village is a one-star GFRAP restaurant, which means that its GFRAP guidance includes "a complete packet of education and training materials, a review of the restaurant’s GF menus, and the assistance of a Resource Person to answer questions." (The most involved level would be "three-star.")

S'MAC's gluten-free web page includes links to raves the restaurant has already received from members of the gluten-free community.

In other news, Bistango remains on an indefinite hiatus (perhaps returning mid-May or early June). And I am, sorrowfully, finally going to give up on Tropica, which was closed more than a year ago and reportedly due for relocation by early 2008.

And, finally, Risotteria is seeking waitstaff. Anyone who wants experience in the gluten-free food serving industry should contact the restaurant for more information.