DIGESTIVE DISEASE WEEK 2007

Nearly two weeks ago, nearly 17,000 medical types converged on Washington, DC for Digestive Disease Week 2007.

So what was the buzz on celiac disease? Dr. Alessio Fasano's overview "Highlights on Celiac Disease,the 'New Kid' on the GI Block" can be found on Medscape.

For me, the highlights of the highlights include the following:

Recovery of the small intestine is often incomplete after a gluten-free diet and the resolution of symptoms.

Clinical presentation among seniors (65 and older) can differ from clinical presentation among younger adults (18-30).

Baboons may provide an animal model of human celiac disease for research.

HLA genotypes DQ2 and DQ8 are found in nearly all celiac disease patients. [NOTE It is very common to test positive for DQ2 and/or DQ8 and be negative for celiac disease.]

Dr. Peter Green of the Celiac Disease Center at Columbia had a hand in many of the studies cited by Dr. Fasano.

I expect to learn more about at least some of the findings at a later date.

D. COLUCCIO AND SONS


















Years ago I fell in love with Le Veneziane gluten-free pasta. This Italian import was on sale at the Fairway on the Upper West Side. The orange-y color was a little strange but the taste and al dente texture was sensational--especially when it came to the tagliatelle (ribbons wound like a bird's nest). The pasta soon vanished from Fairway, but my fond memory of it lingered like a spaghetti strand caught in a colander.

So I was thrilled to learn about the Brooklyn grocery D. Collucio and Sons thanks to a tip from Suzanne on the message board at the New York City Celiac Disease Meetup Group. Suzanne wrote that Coluccio's carries Le Veneziane as well as Scotti pasta.

Last Saturday I took the N train to the New Utrecht Avenue stop and walked over to D. Coluccio's at 60th Street near 12th Avenue. My beloved tagliatelle wasn't there, but I did find five types of Le Veneziane pasta:

Anellini (small rings used in soups and salads) 8.8 oz @ $3.09
Ditalini (tiny tubes used in soups) 8.8 oz @ $3.09
Eliche (screws) 8.3. oz @ $3.09
Penne Rigate (slant-cut ridged tubes) 8.8 oz @ $3.09
Spaghetti 17.6 oz @ $5.25

I also found these two types of Scotti pasta:

Penne Rigate 8.8 oz @2.95
Spaghetti 8.8 oz @ $2.95

I purchased samples of each and then bid a fond farewell to Coluccio's.



















And then I walked back to the N train and headed for Coney Island.

Photos: David Marc Fischer

SHAMELESS SHIRT PROMOTION

May is for the mamas; June is for the papas. And so are a bunch of items at the Gluten-Free NYC Boutique. Like this lid!
















And this shirt!
















They're both at the home of the GF Alphabet.
















And now for a Public Service Announcement for fatherhood!


Source (00:30)


Designs: Debbie Glasserman Design

EVENTS PAST AND FUTURE

















See the above picture? That's the look of thousands of dollars being raised for the Celiac Disease Center at Columbia University at last weekend's L. Lodico Walk for Celiac Disease. "We had about 90+ people and raised over $5900 (pledges are still coming in)," wrote organizer Lina Lodico on the message board of the New York City Celiac Disease Meetup Group. Congrats to Lina, who organized the walk with the support of the Long Island Celiac Sprue Support Group Chapter #23. She hopes to do even better next year.


The New York City Chapter of CSA/USA continues to hold its dinner get-togethers, with the next dinner scheduled for Gus' Place on Thursday, May 31, at 6:30 pm. Leaders Merle Cachia and Mary Ferry state that reservations must be made by Tuesday, May 29 and recommend arriving at 6:15 pm "in order to make a leisurely choice from the menu." For more information, call Merle at 212-662-2464 or Mary at 212-304-1026.


North of the city, there's another walk coming up on Sunday, June 3. This annual event, one of a nationwide series of walks overseen by the University of Maryland Center for Celiac Research, will take place at Rockland Lake State Park (Parking Lot #1) in Congers, New York. Registration is at 9 am; the walk starts at 10 am. Proceeds will go to the University of Maryland Center for Celiac Research and the Celiac Disease Center at Columbia. Erin's got the skinny at Gluten-Free Fun.


And coming up on the afternoon of Sunday, June 24 is the 9th Annual Family Picnic of the Westchester Celiac Sprue Support Group. It's scheduled for Sleepy Hollow's Kingsland Point Park, which adjoins Metro North's Philipse Manor Station. Phone 845-486-7088 if the weather is iffy. (There is no rain date.)

Photo: Lina Lodico

POUGHKEEPSIE JOURNAL ARTICLE

Gluten-free kudos go to freelance writer Carolyn Torella for her article "Kids adjust to life with celiac disease" (May 20, 2007). Unlike recent items run by The New York Times and NPR, Torella's article suggests (albeit in a very understated way) that there's a real health crisis out there:

About 2 million, or 1 in 133, people in the United States have celiac disease, but it could be under-diagnosed, according to the NIH, as many of the symptoms could be attributed to other health problems.

The article reports on the family of Soul Dog owners Jenny and Adam Teague as well as some other "case studies." In the instance of one thirteen-year-old girl who was diagnosed in February 2006, it notes that she already cooks for herself (good for her!) and also benefits from the support of her friends (good for them!).

There is also a good set of resources on the right sidebar of the article.

CELIAC SPRUE UNDER THE MICROSCOPE

Here's a quickie presentation on what happens to the small intestine when a person with celiac disease is not on a gluten-free diet. Click here for the Dr. Peter Green version. And here's a blues version.



Source (2:40)


PS Best wishes for the L. Lodico Celiac Walk for Celiac Disease!

FOLLOW-UP: GLUTEN-FREE VENDOR FAIR 2007

Now that Erin of Gluten-Free Fun has overcome certain horrific technical difficulties, she's posted a fun slideshow of last month's Gluten-Free Vendor Fair. Welcome back to blogland, Erin!

Other coverage can be found at vendor Mike Eberhart's Gluten Free Blog.

I neglected to mention a bunch of things myself...but...I note that Natural Feast was another vendor who journeyed some distance to attend--from somewhere up in New England!

And remember how I mentioned that Mr. Ritt's was on the move to Millville, New Jersey? This weekend is the official grand opening of the new Garden State site of this gluten-free bakery (at Second and Vine Streets; 856-825-8770), purveyors of assorted baked goodies including sachertorte, linzertorte, cheesecake, and (my favorite) moist cakes with buttercream frosting.

From earlier this year, here's a shot of work on an exterior mural at the bakery's new digs, which for now will be open on weekends and "by appointment."

















Photo courtesy Mr. Ritt's

FIBROMYALGIA AND IBS: CELIAC DISEASE IN DISGUISE?

Could some people diagnosed with fibromyalgia actually be suffering from celiac disease? The National Fybromyalgia Association seems to think so. The May-August issue of its magazine Fibromyalgia Aware includes an overview of celiac disease written by Elaine Monarch of the Celiac Disease Foundation.

Available on PDF, the article--"Are You the One?"--cites nationally recognized research to establish how nearly 3 million Americans are estimated to have undiagnosed celiac disease, then states

A study by one nationwide celiac disease support group* indicated that among adults ultimately diagnosed with celiac disease, 9 percent were orginally diagnosed with fibromyalgia and 30 percent with IBS. Since many patients with CD have muscle aches, joint pains, GI symptoms, and fatigue, it is understandable that those people might get a label of fibromyalgia.

In addition to the tender points exam, the diagnosis of fibromyalgia is based on a number of symptoms that can be due to other conditions--celiac disease among them. This is further evidence that different so-called "silent" symptoms need to be taken seriously by physicians and thoroughly evaluated before a diagnosis of fibromyalgia (or IBS) is given.

People diagnosed with celiac disease typically experience greatly improved health when excluding wheat, barley, and rye from their diets. Diagnostic testing for celiac disease should, however, take place while one is still eating those foods.

* Cited in Dr. Peter Green's book Celiac Disease: A Hidden Epidemic.

SHOP RONG?

What's this I see?



















A tiny gluten-free section? At ShopRite??



















But wait! How did this product get here??



















I took up the matter with the Customer Service desk. I was assured that the problem would be addressed.

Sure enough, the Arrowhead Mills gluten was gone when I returned two days later...but look at what had gotten cozy with a bag of GF Pancake Mix!



















I again paid a visit to Customer Service, which was friendly and concerned enough to correct the problem on the spot.

I'm sure that eventually (maybe already?) everything will be all right at ShopRite.

Photos: David Marc Fischer

LEAD BREAD

It helps to have a sense of humor when trying out gluten-free products and recipes.



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As for gluten-free hard crust rolls, my first choice is Everybody Eats, though Against the Grain Gourmet Foods offers an interesting, flakier, alternative. (I'd like to see them try a croissant.)

NPR HEARTS GLUTEN, IGNORES SICKLY MILLIONS

If May is truly Celiac Disease Awareness Month (some have said it's October; I say it's every month), then this might be the worst Celiac Disease Awareness Month ever.

Recently there's been a lot of good coverage of celiac-related issues, but so far this month there have been at least two items in major media outlets that touch on celiac disease but miss the big (medically urgent) story:

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.

I already covered Tuesday's New York Times story, "Jury is Still Out on Gluten, the Latest Dietary Villain" and expressed my concern that the article neglected to mention the large number of undiagnosed people suffering from celiac disease while perhaps downplaying the fact that celiac diagnoses are a concern of informed mainstream medical professionals, not just "alternative" practitioners. I was afraid that the article might make gluten-free dieting come across as a mere fad rather than as a cure for millions of people who are overdue for medical diagnoses.

Yesterday NPR came out with another story that concerns me for similar reasons. Allison Aubrey's "For Most People, Gluten Isn't a Diet Enemy" is full of mixed messages, but its mix of gluten advocacy with tidbits about gluten intolerance does not acknowledge that most people who are clinically ill from gluten have not yet been diagnosed. One could go away from the article with the false impression that everyone who should be on a gluten-free diet is already on the diet, and anyone else is just being a faddist.

The piece opens with "You've probably seen them in the grocery store aisles: 'gluten-free' labels. Food manufacturers have added thousands of items in the last few years." Then it proceeds to celebrate the sheer goodness of gluten, especially as it applies to pizza-making Cornell food science professor Joe Hotchkiss.

Hotchkiss says it's the gluten that makes the dough strong and chewy. With its ability to hold ingredients together, it's no wonder it has been added to so many things....

Nothing is more inviting than the smell of baking bread. Hotchkiss says he loves the taste, and he can't imagine why anyone would choose to eliminate wheat, and therefore gluten, from their diet.

"For the average person who is not sensitive to this protein, there's no reason to avoid it," Hotchkiss says.

The exception, he says, would be people who are allergic to wheat protein or have sensitivity to gluten.

Oh yeah: There are those teeming millions.

The story then discusses how "evolving ideas about nutrition mean more people are experimenting with wheat-free diets." It says

The demand first came from people who have celiac disease, an autoimmune condition which requires sufferers to eliminate wheat from their diet.

But lately, there's been a segment of shoppers who are just curious.

And then the story ventures into fad-land.

These customers are looking to eliminate certain ingredients. When something like oat bran or sugar comes into the spotlight, some consumers build their diets around getting as much of the ingredient as possible or avoiding it completely. This may be part of what's happening with gluten now.

"It's rather interesting that the whole celiac disease problem has created a celiac fad diet," says Dr. Leo Treyzon, who specializes in gastrointestinal disorders at the UCLA.

About 2.5 million Americans are thought to have celiac disease. The prevalence is a little less than 1 percent of the population. The disease causes serious irritation and inflammation of the gut. For those people, avoiding gluten is not a fad. It actually stops the disease.

But Treyzon says a lot of other people are diagnosing themselves with gluten intolerance. And some report less bloating or stomach cramps on a wheat-free diet.

"If they feel better when they don't ingest gluten, there's no harm from doing that," he says.

Then the article mentions how difficult it is to stay on the diet, asserts that there's no reason for people to worry about poisoning from contaminated, and concludes with Hotchkiss and the glories of gluten.

Hotchkiss says the pet-food contamination may raise awareness of the need for inspections. But he says there's no need to fear gluten. It's not a dietary villain for most of us.

"I think the old nutrition advice is still the best," Hotchkiss says. "Eat a little of everything and a lot of nothing!"

And when it comes to pizza, Hotchkiss says he likes it best topped with anchovies and fresh mozzarella.

How falsely reassuring! It's true that gluten doesn't seem to be a dietary villain for most people, but it is a dietary villain for about 2.9 million Americans who may be undiagnosed despite the availability of reliable testing. Many of the people "trying out" gluten-foods may not be simply curious or faddists but actually be desperate to find a solution to symptoms associated with celiac disease.

So while NPR managed to reassure its listeners that they need not fear gluten, it squandered an opportunity to raise awareness that millions of Americans could actually benefit from testing for gluten intolerance.

NEW YORK TIMES ARTICLE

The New York Times (May 8, 2007) includes an article by Kate Murphy entitled "Jury Is Still Out on Gluten, the Latest Dietary Villain." I've got mixed feelings about it.

First of all, I want to go over some basics. As the article states down in its 13th paragraph (out of 24), "The prevalence [of celiac disease] in North America was previously estimated at about 1 in 3,000, but several studies published in the last three years indicate that it is closer to 1 in 100--and 1 in 22 for those with risk factors like having an immediate relative with celiac disease." The article quotes Dr. Peter Green as saying that "Chances are now that people actually know someone who has it."

But the article does not say something else that is true: Among the 1 percent estimated to have celiac disease, only a very low percentage--perhaps 3 percent--has been correctly diagnosed. That, to me, remains the big story: Nearly 1 percent of the population--from infant to senior--remains unaware that it has celiac disease. That is what I call a national health crisis.

Instead, the article focuses on people who go on gluten-free diets because they feel better on the diet (or think they might feel better on the diet) despite testing negative for celiac disease or not even testing for it at all. There's nothing in the article that suggests that going on such a diet would, by itself, be harmful. So I suppose the article comes across as part health article, part trend piece, and part marketing report (as it discusses the increasing availability of gluten-free products).

I'm not sure why I feel a little disappointed by the article beyond its failure to hammer home the existence of a real and quantifiable health crisis. But it might have to do with some of its phraseology. Here's a paragraph that got under my skin:

Nevertheless, it has become a popular dietary villain. Gluten-free foods are popping up on grocery-store shelves and restaurant menus, including those of national chains like P. F. Chang’s and Outback Steakhouse. Warnings of gluten’s evils are common on alternative medicine Web sites and message boards.

The use of the phrase "popular dietary villain" strikes me as inappropriate and not supported by the article. There's no statistic to show that the gluten-free foods are popular--and I don't think they are. Gluten-free labeling is actually increasing largely because people with celiac disease have fought long and hard for this reasonable practice. The sentence associating vague "warnings of gluten's evils" with alternative medicine could give readers the false impression that the warnings aren't also associated with mainstream medicine. And I think that the almost obligatory roll call of common substances that contain gluten--salad dressings, ice cream, peanut butter, adhesives on envelopes, and lipsticks and lotions--might've been better researched. Most if not all peanut butters are, to my knowledge, gluten-free, and I've been hearing that the warning against adhesives on envelopes might lack substance, too.

Another misleading sentence: "But with supermarkets brimming with gluten-free breads, cereals, cakes and cookies and restaurants serving gluten-free pastas, pizzas and beer, it has become far less difficult to stay on a gluten-free diet." I'd like to dare Ms. Murphy to show me supermarkets brimming with gluten-free baked goods. Not even Whole Foods qualifies. And as for restaurants serving gluten-free pastas, pizzas and beer? They're still very rare.

I do share the concern of quoted University of Texas gastroenterologist Dr. Don W. Powell that "A lot of alternative practitioners like chiropractors have picked up on it and are waving around magic silver balls, crystals and such, telling people they have gluten intolerance." A consultation with an informed gastroenterologist can be invaluable in diagnosing or ruling out celiac disease using a panel of blood tests possibly followed by an intestinal biopsy.

SPRUES BLUES

In this video, Dr. Joel Greenson and The Blue Genes set diagnostic advice to music.



Source (2:59)

FUNDRAISING WALK IN QUEENS

The L. Lodico Walk for Celiac Disease is scheduled to take place at Little Bay Park in Queens on Sunday morning, May 20, 2007. (For the urban explorers who--like me--haven't yet been to the park: It offers a striking bridge view!)

The event organizer is Lina Lodico (who had a table at the recent Gluten-Free Vendor Fair), with sponsorship from the CSA's Long Island Celiac Sprue Support Group, Chapter 23. I understand that gluten-free vendors and other attractions will be at this event.

Registration materials can be found here. Participants are encouraged to arrive at 9 am on the day of the event; the walk lasts from 10 am to noon.

Proceeds go to the Celiac Disease Center at Columbia University and the Celiac Sprue Association (CSA).

The event is listed on the calendar of the New York City Celiac Disease Meetup Group.

ELISABETH HASSELBECK: PREGNANT AGAIN!

On Monday's The View, Elisabeth Hasselbeck announced that she has another bun in the gluten-free oven!

Here's the magic moment. (No, not that magic moment!) You just have to wait for some of the preliminary material to pass. And the "educational" portion of this post comes below the video.


Source (4:13)

This is as good a place as any to take note of connections between undiagnosed celiac disease and infertility/childbirth issues. Studies seem to have yielded varied conclusions, but as recently as August, 2005, Gastroenterology reported on a study that found that "undiagnosed celiac disease is associated with an increased risk of intrauterine growth retardation...low birth weight...very low birth weight...preterm birth...and caesarean section.... In contrast, those diagnosed with celiac disease before their births were not at increased risk for these adverse fetal outcomes."

And here's an older (2002) overview of fertility and pregnancy issues by Michelle Melin-Rogovin. Whether or not the interpretation of the data has since been thrown into doubt, it still makes sense to be on the lookout for celiac disease in cases of infertility (male and female) and other pregnancy and childbirth concerns.