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

Thorn on the Air

Michael Thorn of the Suffolk County Celiacs writes that he can be heard on the air starting Sunday on the following stations at the following times:

WHLI (1100AM) 9am
WKJY (98.3FM) 6am
WBZO (103.1FM ) 7am
WMJC (94.3FM) 7am
WLVG (96.1FM) 7am
WRCN (103.9FM) 6am & 11pm

Photo: David Marc Fischer

LONG ISLAND UPDATE

Michael Thorn of the Suffolk County Celiacs recently announced the date of the third Long Island Vendor Fair: Sunday, April 16, 2009! The first and second editions were great, so mark those calendars, okay?

In the meantime, please be advised that veteran vendor Joan of Joan's GF Great Bakes (JGFGB) is slotted to appear at the Health Nuts in Bayside (211-35 26th Avenue) this Sunday, July 13, 2008 [from about Noon 'til 5].

A tip if you go to Bayside: Make sure you have the address! Don't do what I did on the day of the JGFGB grand opening in Bellmore: I drove there without the address and desperately prowled the streets of Bellmore until blogger, New York City Celiac Disease Meetup Group (NYCCDMG) organizer, and homegirl Erin phoned and navigated me in.

Here she is with Joan's son Howie. In Howie's other hand is one of Joan's gluten-free faux flying saucers, made especially for this fun occasion.

















Here's Howie with Joan herself!


















Here's a cookie platter featuring Joan's gluten-free graham and chocolate chip and cow cookies. Don't be deceived by the looks of those sweet bovine bites: The cow cookies are dairy-free too!

















Not shown: Joan's bountiful bagel buffet, Joan's onion rolls, Joan's pizza, etc., etc. Everything was delicious—and it was good to see the turnout, including such luminaries as NYCCDMG assistant organizers Ben and Liz, celiac awareness pin creator Aileen Markowsky, Nassau support group leader Jim Blank of the CSA's Long Island Chapter (which is having a July 18 meeting that will also feature Joan), and Erin's mom—another homegirl! More photos can be found here.

Photos: David Marc Fischer

GLUTEN-FREE VENDOR FAIR 2007

On Sunday I attended the second Gluten-Free Vendor Fair hosted by the Suffolk County Celiacs. I can't cover every aspect of this impressive event, but here's an overview.

The fair took place in Roosevelt Hall of SUNY Farmingdale. This is a view of the vendor entrance, where you can barely see the Suffolk County Celiacs greenshirts "guarding" the door.



















Outside the main entrance, cherry blossoms blew in the breeze.



















Inside--past the Marble Slab Creamery of Lindenhurst ice cream stand at the entryway--there was a big, big crowd. How big? Late in the afternoon, organizer Michael Thorn was excited to hear that the number was around 1400, which he said was double the attendance of last year's event!



















In the crowd were lots of familiar faces, including Lou Zimet, a member of the Westchester Celiac Sprue Support Group, and Dr. Peter Green, who came across as calm, cool, casual, and convivial before the first of his two presentations.



















Also present (unless I'm mistaken, which is, of course, always a possibility) and other "cast members" from Generation Gluten-Free: Sue Goldstein...Pat MacGregor...Beth Hillson of Gluten-Free Pantry...George and Ceil Chookazian of Foods by George. Hm. Too bad there wasn't an autograph table!

I noticed Ann Whelan of Gluten-Free Living, too. And nutritionist Anne Roland Lee of the Celiac Disease Center at Columbia University.

I spotted a bunch of other New York City people, including the amazing Erin of Gluten-Free Fun, who very thoughtfully handed out New York City Celiac Disease Meetup Group stickers to keep us from having identity crises. (I forgot to tell Erin some nice things but I'll try to make up for that this week.) And I overcame my usual shyness to say "hi" to Kelly of the CeliacChicks. (Yet I forgot to tell her that, outside the building, I had seen a little celiac chick looking incredibly precious in Chick Couture.)

Among the dozens vendors, one of the main attractions was Joan's GF Great Bakes. That table was buzzing with folks buying bagels as well as chocolate chip cookies and English muffins. (The muffins--which, I hear, sold out pretty fast--are egg-free and dairy-free as well as gluten-free.) Here's Joan herself!



















And here's an action photo at the table of another welcome returnee from last year: Everybody Eats. Love those crusty breads!



















Not far away was Caffe Baldo's Joanne...



















...supervising the distribution of some of her specialties--including her famous pizza! (Check out the cheese, please.)



















Okay. We've sampled the bagels. We've sampled the pizza. What else might one expect to find at a Long Island food fair?

Chinese food, of course! One of the more popular (and generous) tables was for New York City's own Gourmet Land. I'm still being told that GFRAP membership is in the works--can't be soon enough, as far as this blogger is concerned.



















As for the sweet treats, I'll start with Julianna's Delectible Fruit. I particularly enjoyed her raspberry and blueberry jams--gifts for my mom--and I was blown away by her story: She received her diagnosis about a year after earning a degree in Pastry Arts. Ouch!

I accidentally erased my shot of Julianna and her goodies, but...um...here's Julianna's jalopy?



















Near Julianna was the table for Massapequa's sugar-free and gluten-free Low Carb Bakery, where (near the end of the day) I managed to grab a wonderfully creamy morsel of an almond-topped cheesecake.



















Close to the center of the room was an amazing sight: a box of gluten-free cannoli shells from John of Mama's Italian Restaurant in Oakdale. See the picture? That's just the top layer!



















Also represented: chocolate.

At the Legal Sea Foods table, I discovered that the chain now offers a rich flourless chocolate cake.



















The chocolatier Heather, of Centerport's Azure Chocolat, shared a table with her ebullient friend Nicole Bubolo, a.k.a. The Benevolent Baker. When I was finally ready for my shot, Nicole was off at the cooking panel, so I had to settle for a blurry picture of Heather and her webmaster Alex, who is Nicole's husband. Got that? He actually hit the road to resupply the Azure Chocolat table after supplies ran out.



















That wouldn't have worked for Tuesday of Empire Torte, who came down from Massachusetts...



















...to dole out platters of her intense chocolate morsels.



















Some others traveled great distances. A Kinnikinnick contingent came all the way from Edmonton, Alberta--and managed to catch Christopher Plummer in Inherit the Wind on the way. And coming in from the Philly area was Mr. Ritt's...



















...which (I learned) is on the move to Millville, New Jersey--more on that at a later date, I hope.

In the meantime, here's the Rittsmobile, back from a recent trip to Detroit!



















I wish I could show you the Cherrybrook Kitchen chariot, but I guess I screwed that up, too. I also failed to take a shot of what I believe is a vintage Silly Yak bumper sticker. But, as I prowled through the crowded parking lots, I did see this on one car's passenger window.



















Hey...did you make it all the way to the end of this post? If so: Way to go!

Photos: David Marc Fischer

PEOPLE ARTICLE

The current issue of People--dated June 11, 2007, it asks "What Happened to Lindsay Lohan?" on the cover--includes a two-page article devoted to celiac disease. The issue is unlikely to appear on the magazine's website, but it should be readily available at newsstands, libraries, and waiting rooms. More on the waiting rooms later.

Sharon Cotliar's article "No Wheat, No Worries" combines facts about celiac disease with short profiles of two California moms with kids diagnosed with the condition. The medical experts quoted in the article are New York's own Dr. Peter Green, director of the Celiac Disease Center at Columbia University and co-author of Celiac Disease: A Hidden Epidemic, and Atlanta's Dr. Cynthia Rudert, medical advisor for the Celiac Disease Foundation. The two moms are Sarah Givens and Danna Korn. Danna, the founder of Raising Our Celiac Kids (ROCK), is also author of Kids With Celiac Disease, Wheat-Free, Worry-Free, and Living Gluten-Free For Dummies.

The article defines celiac disease as "an autoimmune ailment, triggered by gluten, that damages the lining of the small intestine." Opening with a classic-sounding case of celiac disease in a three-year-old whose symptoms included severe anemia and belly distension, it covers the challenge of switching to a gluten-free medical diet as well as recent improvements in labeling and product availability that make the adjustment easier.

From a medical perspective, the article states that celiac disease "may affect as many as 1 percent of Americans...although many may be misdiagnosed and some suffer from only minor symptoms." It refers to Dr. Green (pictured) as saying that the time between onset and accurate diagnosis averages 11 years. It also mentions that women are twice as likely to have celiac disease and lists some of the manifestations: fatigue, anemia, infertility, osteoporosis, some cancers, vitamin deficiencies, abdominal bloating and pain, both diarrhea and constipation, and even irritability.

The story also includes a photo of Danna and her family with a toaster (marked GLUTEN-FREE...Good for me!), another shot of Danna with Sarah Givens and her daughter, and a funny sidebar image showing gluten-containing foods marked with yellow CAUTION tape.

The article ends with Dr. Rudert advising people who suspect that they have celiac disease to get a complete blood tests, and notes that diagnosis is confirmed with biopsies of the small intestine. It refers readers seeking more information to the National Institute of Health and Danna Korn's Gluten Freedom.

So what's to be done now that People has covered celiac disease? Michael Thorn of Suffolk County Celiacs suggests emailing the magazine "to thank them for the article, share a brief personal story and/or encourage them to cover adults with CD. Praise them for covering this very common disease and ask they they do more."

And here's something else you can do: When you're in a doctor's waiting room, look for the copy of People and leave it open to page 143, where the article starts. Better yet, find out if the article can be kept in the waiting room and otherwise made available for other patients to read.

Dr. Green has talked about raising awareness of celiac disease in doctor's offices. This People article could be very useful in achieving that goal.

PS The April 9, 2007, People briefly referred to celiac disease in an item on Elisabeth Hasselbeck.

More GF LI

TV and Radio Coverage

I thought I'd follow up on my post about Sunday's exciting gluten-free vendor fair by drawing attention to a couple of recent developments on gluten-free Long Island.

Here's Michael Thorn, vendor fair organizer and otherwise active member of the Suffolk County Celiacs, interviewed by Frank Brinka in an extensive Island Outlook radio segment.

And SuezBoss/Sue Moller of GlutenFreeLI appeared with News12 newswoman Mary Mucci in this Long Island Naturally segment (April 20, 2009) that involved visits to Joan's GF Great Bakes as well as GFRAP restaurants Caffe Baldo, Mama's Italian Restaurant, and Smoking Sloe's.

News12 item posted using ShareThis

OCTOBER 13: MACY'S DAY!

Here's something that looks like a win-win proposition from Macy's and the National Foundation for Celiac Awareness:

Shop for a Cause! Macy's has partnered with the National Foundation for Celiac Awareness to raise funds for awareness and research projects. And, it all involves shopping!

Donate $5 to NFCA and in exchange you'll receive a 20% off card from Macys that is valid on purchases on Saturday October 13. You'll be entered to win amazing prizes such as: a $500 gift card for Macys, home appliances, clothing and other incredible items. Click Here to join Shop for a Cause!

I did some calculatin' and found that you'd break even with a $25 purchase; after that, it's Macy's gravy. Not a bad deal, eh?

Thanks to Michael Thorn for the lead—now keep on spreading the word!

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.

STUDIES SUMMARIZED



Source (00:20)


Capsule Endoscopy Findings

Capsule endoscopy offers a detailed view of the entire digestive tract (see sample above). A Mayo Clinic study using capsule endoscopy showed that damage in the small intestine due to untreated celiac disease can vary significantly from patient to patient and not heal completely even after a year or more on a gluten-free diet. The degree of damage "did not explain differences in clinical presentation." (Clinical Gastroenterology and Hepatology, CNNMoney.com)


Oral Manifestations

A meta-study found:

Dental enamel defects are the oral lesions most closely related to CD. There are conflicting data on the association between CD and recurrent aphthous stomatitis. A correlation of CD with atrophic glossitis has been reported, although robust evidence in support of it is lacking. Patients with CD have caries indexes seemingly lower than healthy individuals, but they may experience delay in tooth eruption. Occurrence of other oral mucosal lesions in CD subjects is likely occasional.

and concluded that

Patients with systematic dental enamel defects should be screened for CD even in the absence of gastrointestinal symptoms. CD screening tests for patients with oral aphthae or idiopathic atrophic glossitis should be selectively considered during a medical evaluation that focuses on all aspects of the patient's status. (Journal of Clinical Gastroenterology)

Seniors

Israeli researchers identified a group of seven people with celiac disease who had been diagnosed after age 60 and saw signs of improvement in cognitive decline (previously attributed to Alzheimer's Disease) as well as other symptoms:

The most common presenting findings were weight loss, iron deficiency anemia, and diarrhea. Two patients suffered from severe early osteoperosis and 2 additional patients had elevated liver function tests. Neurologic manifestation was suspected in 3 cases. Two female patients presented with cognitive decline that was attributed to Alzheimer dementia but ameliorated after the initiation of gluten-free diet. The third patient had peripheral neuropathy that completely resolved after the initiation of gluten-free diet. Median lag in diagnosis was 8 years. Diet treatment led to complete resolution of symptoms in most cases and a significant weight gain.... (Journal of Clinical Gastroenterology, NewsRx)

Thanks to Michael Thorn

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.



Source (2:52)


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.

Boston's Healthy Villi Group Breaks with CSA

This summer, the Healthy Villi support group of Boston informed the Celiac Sprue Association (CSA) that, "After careful consideration, the Board of the Healthy Villi has voted to end our affiliation with CSA/USA. Our two groups are educating members with conflicting information. This does a disservice to both CSA/USA and the Healthy Villi."

In the letter conveying the decision, Lee Graham of the Healthy Villi cites the following:

Scientific evidence shows that distilled vinegars and distilled alcoholic beverages, regardless of the source grain, are safe choices in a gluten-free diet.

Currently, the clinicians of the Celiac Center of Beth Israel Deaconess Medical Center recommend avoiding consumption of oats for newly diagnosed patients, but only until it can be clearly demonstrated that celiac disease is well controlled. After this point, gradual addition of pure oats from a gluten-free facility may be attempted under a physician's guidance. Studies show that eating pure oats can be advantageous for celiacs as a way of adding fiber to their diet.

Current scientific consensus is that a food product measured to have less than 20 parts per million of gluten is suitable for the gluten-free diet.

The letter also states that "The American Dietary Association [sic], the Gluten Intolerance Group, and the Celiac Disease Foundation speak with one voice. They educate people with celiac disease with the same consistent information. CSA/USA takes a different stand."

Thanks to Michael Thorn for the info.

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.

Island Outlook on Celiac Disease

Kudos to Michael Thorn of the Suffolk County Celiacs and Frank Brinka of Island Outlook for a very good, up-to-date, and wide-ranging discussion of celiac disease. The running time is 30 well-spent minutes.

Island Outlook is a production of the LI Radio Group, where Eric Schwartz is Senior Account Executive. Kudos also to Schwartz, who is involved in a radio campaign to boost awareness of celiac disease.

GLUTEN-FREE VENDOR FAIR!

Congratulations to Suffolk County Celiacs for a successful Gluten-Free Vendor Fair!

At yesterday's event, throngs of celiacs grazed food samples inside a Long Island warehouse made available by generous host Comfy Cuisine.

At the booths, I was glad to see the familiar faces of the Celiac Chicks, Ann Whelan of Gluten-Free Living, Rory Jones (co-author of Celiac Disease: A Hidden Epidemic), and nutritionist Anne Roland Lee (who earlier in the week got raves from folks at the New York City Celiac Disease Meetup) as well as folks from the Ramapo Valley Brewery, Philadelphia's Mr. Ritts Bakery, The Silly Yak Shirt Co., Gluten Free Bread Basket, Inc., Plainview's Dr. B. Well Naturally (a.k.a. Safe Harbor Foods), and Whole Foods, which is about to introduce hearty nutmeal-raisin cookies and some new breads to its gluten-free inventory.

I wasn't able to sample everything at the fair. But I enjoyed the LifeField Buckwheat as well as the baguettes of Everybody Eats and the bagels of the East Meadow bakery Joan's GF Great Bakes (gfgreatbakes at yahoo dot com). Outstanding crusts in both cases--no wonder they were popular!

Meet Pedro Arroba and Bruce Bassman of Everybody Eats.
















Here's Joan (third from left) with some of the posse from Joan's GF Great Bakes.
















And here's the energetic and enterprising Suffolk County Celiac Michael Thorn. He says he doesn't photograph well, but I think that might just be a result of the bolts of inspiration forever shooting through his brain. Looks like he's just come up with another brilliant idea!















Photos: David Marc Fischer

LONG ISLAND VENDOR FAIR

A celiac vendor fair will be held June 11, 2006 on Long Island--and Michael Thorn (mthorn at BNL.GOV) of Suffolk County Celiacs has announced that the group will help train travelers get to the event from the LIRR's Pinelawn station!

Comfy Cuisine, the fair's host, will give out free food samples. So will Kinnikinnick. There will also be discounts on Celiac Disease: The Hidden Epidemic (by Dr. Peter Green and Rory Jones) and the new edition of Gluten Free: A Comprehensive Guide (by Shelley Case). Also expected: Mr. Ritts Bakery--all the way from Philadelphia!

Here are the basics:

Celiac Vendor Fair
100 Nancy Street, West Babylon
June 11, 2006 from 11am to 5pm

Train fare is $8 each way off-peak, or $7.60 each way if you order a web ticket that will be mailed to you in advance. (That's about $60.80-$64.00 for four, so one could make a case for celiac carpooling.) You can find the LIRR train schedule for Pinelawn here; double-check it on the weekend of the event.