My Note to the FDA

I'm Not Sure It Got There, Though!

Last week I finally submitted some comments to the FDA about its proposed gluten-free food labeling research. I thought I'd figured out the submission process, but now I'm not so sure.

Anyway, as promised, I'm sharing it with you as well. I made an effort to address the FDA's concerns, but I have a sneaky feeling that some of my remarks might've been considered off-topic. Still, I hope they're not too crazy—and I hope they provide some food for thought. Here goes!

I am a clinically diagnosed person with celiac disease who has been on a gluten-free diet for more than eleven years. I maintain a blog called Gluten-Free NYC.

I would be glad to see any new, thoughtful research on labeling food to make shopping and dining easier for people on medical gluten-free diets.

My suggestions probably relate most to “ways to enhance the quality, utility, and clarity of the information to be collected.” They are based on my experience, including communication with many others who are gluten-free.

Basically, I encourage you to work hard to make the most of the study by “asking the right questions.”

So please consider the following nine points when formulating your questions:

1. Many labeling discussions involve coming up with labels such as “gluten-free” to represent measurements, but I ask you to please consider the option of also including the actual measurements on labels, perhaps expressed as a range reflecting the variance that can be found when measuring products. Certainly sharing the high-end (or worst-case scenario) of the range should be considered. The University of Nebraska food allergy lab used by the Celiac Sprue Association and directed by Steve Taylor might be a good source of information about taking this approach. Something else to consider is research on the reliability of different measurement techniques, which continue to evolve. A presentation about this was made at the 2006 International Celiac Symposium held in New York City. I think the presenter was Enrique Mendez of Spain’s Centro Nacional de Biotecnologia.

2. Find out what people think “gluten-free” or “gluten” signifies. I think many people might not realize that the main concern about gluten in food has to do with specific medical conditions, not weight control or something proven to be inherently unhealthy for the general population.

3. On a related point: Consider including educational information on labels to explain why people might want to go on a gluten-free diet. This is important in terms of informing the population about celiac disease, a severely underdiagnosed condition, as well as debunking misunderstandings that people might have about gluten in food. The information could be included on some labels, but it could also be offered via a toll-free number and a website. This could boost the dissemination of medically sound (NIH?) information explaining why gluten is being measured in the first place.

4. In preparing this questionnaire, consult with gluten-free associations in other countries (such as Canada, Finland, and Italy) to learn from their experiences.

5. Consider including dates on labels to indicate when they were printed. This could boost consumer confidence about how well products live up to the most recent standards.

6. Look into using label or bar code information to help determine price differences between products and their gluten-free equivalents. There is a possible tax deduction based on the difference, but it can be a burden for individuals to have to calculate a year’s worth of price differences every year. Perhaps this could lead to a standard deduction option for gluten-free diets.

7. Look into using bar code information to enhance consumer ability to research the gluten content of the product and also enhance the ability of retailers to identify which products are suitable for gluten-free diets.

8. Address areas where current allergen labeling has been inadequate. A possible example might be Quaker Oats, which is one of many oat lines that test positive for gluten even though the labels do not warn about wheat content.

9. Question why barley content hasn’t been added to the “problem ingredient” list. It is not one of the main allergens, but it is one of the main sources of gluten contamination, which concerns about 1% of the population.

Thank you for considering these points and good luck in taking swift, sensible actions to assist a growing segment of the population.

Got comments for the FDA? The cutoff date is May 5, 2009.

And thanks to Ben Cappel for #5!

Prepping a Parent

Let's say you've managed to build an accommodating romantic relationship—what about "the parents" and other family members? I've previously noted how Jane Grubin accommodates her son-in-law Ben Cappel's diet. That might be the kind of thing that's in store for Ann Goldberg and her family, judging from her Chabad.org column "Midnight Ironing."

Of course, GFNYC's sympathies go out to Chabad and all others harmed by the recent violence in Mumbai, including those terrorized at the Cama & Albless hospital for women and children.

More on Wellshire Farms

A Look at the Findings

Following up on Friday's post, let's focus on some of the Chicago Tribune's test findings.

The Tribune wrote the following in a kind of sidebar:

The FDA doesn't define "gluten free," but generally "free" means a product contains none of the substance in question. The FDA has proposed adopting a 20 parts per million standard. In July, an international health commission recommended a similar standard.

The USDA, which has jurisdiction over meat products (including those below), has no policy specifically addressing "gluten-free" claims. The agency OKs labels before products go to market....

The Tribune bought three popular Wellshire Farms products advertised as "gluten free" and sent multiple samples to a lab for testing.

Chicken Bites: Tested at 204 parts per million and 260 ppm

Chicken Corn Dogs: Tested at 116 ppm and 2,200 ppm

Beef Corn Dogs: Tested at 191 ppm and 1,200 ppm

Wellshire Farms provided the Tribune with its own testing results, conducted in the spring. Their results showed: chicken nuggets tested at 200 ppm, chicken corn dogs 150 ppm, and beef corn dogs 120 ppm.

Prior to the adoption of the 20 ppm standard, the standard for many was 200 ppm, which might explain why Wellshire Farms claims the 200/150/120 levels (though I think that 200 ppm for the chicken nuggets was really pushing it).

Setting those numbers aside, the Chicago Tribune story, which seems credible, strongly suggests that, in practice, test levels are actually very variable with the possibility of highly problematic levels of contamination.

This makes me lean more toward labeling standards that include a ppm rating that indicates the probable level of gluten plus the possible high level, based on up-to-date testing (using the most appropriate testing equipment, which varies according to product). I'm not sure if a score of <20/120 or (in the case of the beef corn dogs, perhaps 120/1200) would be the best solution, but something in that direction should be seriously considered. And, as Ben Cappel has suggested, label dates would be good to heighten understanding of how up-to-date (or out-of-date) a food rating might be.

WABC Eyewitness News Goes to Miller's

WABC's Eyewitness News recently paid a visit to Miller's Gluten Free Bread Co. in Rochelle Park, New Jersey. The video is here.

Thanks to Erin of the New York City Celiac Disease Meetup Group (NYCCDMG) for the lead. You can find more coverage courtesy of Ben Cappel at the CeliacChicks website.

NOTED My sympathies to go the Coluccio, Dupont, and Milito families on their recent losses. You may know the Coluccios as purveyors of imported Italian gluten-free pasta in Brooklyn.

"NAVIGATING THE GLUTEN MINE FIELD"

Ready for a sequel to my recent posts Meet the Parents and Diets and Relationships?

Food writer Jean Stevens of New Jersey's Herald News starts her article "Navigating the gluten mine field" (February 27, 2008) by showing how well Jane Grubin accommodates the gluten-free diet of her son-in-law, Ben Cappel. The article covers a lot of gluten-free ground and ends with a glimpse of pizza envy between a Passaic educator and his wife, who was recently diagnosed with celiac disease.

They might pick up some pointers about coping from this accompanying slide show

Stevens also has an overview of "Gluten-free local businesses" and a blog post entitled "Gluten-free in Passaic, Fair Lawn, and beyond!"

LILLI AND LOO: A META-REVIEW!

As you might already know, the Asian restaurant Lilli and Loo recently joined the roster of the Gluten-Free Restaurant Awareness Program (GFRAP) on the advanced level, which means that the restaurant receives "intensive assistance in menu review by qualified nutrition experts" along with GFRAP's basic "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." So far Lilli and Loo is the only non-chain restaurant in Manhattan on that level, and I can say from my own experience that this eaterie is worth multiple visits.

When the restaurant first came up with its gluten-free menu, Maggie and her associates offered a banquet's share of diverse options, but since then the menu has expanded to include even more choices, including one of my favorite types of Asian cuisine.

Many items on the restaurant's evolving gluten-free menu have already been favorably received by A Gluten-Free Guide, CeliacChicks, Gluten-Free Fun, and Allergic Girl. Probably the stand-out item has been the cool and refreshing Saigon Spring Roll appetizer. A fun new addition is the Rock Shrimp Tempura. Not to be confused with classic tempura, which is known for the lightness of its batter, this appetizer is more like an outstanding version of popcorn shrimp, presenting the restaurant's whole tasty shrimp within a thick, crunchy coating enlivened by a drizzled mayonnaise sauce. Filling out the appetizer options are edamame (steamed salted soy beans) and Thai Chicken Lettuce Wraps, which involve wrapping lettuce around a mix of chicken, pineapple, and vegetables.

In the early online coverage of Lilli and Loo, the glazed Borneo Orange Chicken came across as a favorite—and I like it too. But oh, how excited I was to find crispy Thai Fish added to the menu! As a longtime fan of various versions of Asian whole fish, I'm especially fond of the crispy variations. At Lilli and Loo, it's served in a two-way style, with numerous separated and boneless chunks atop the rest of the fish, which is still on the bone. So, if you're not used to eating this dish, you can enjoy the separated pieces and also learn to pull the rest of the tasty, moist meat away while leaving most or all of the bones behind. And don't be afraid to poke around the cheeks in the fish head for the tiny, subtly flavorful morsels you might find there. (Note that when ordering this type of dish, it can be helpful to talk with the waitperson about how many of you intend to share it, to make sure that you'll get the right size of fish.)

I'm still exploring the other items on the menu, looking for ways to mix-and-match cuisines or just commit to one type throughout. I've been pleased by the mild Asian Chicken Curry and Masaman Chicken Curry as well as the Pomegranate Teriyaki Grilled Chicken, although I was sorry to find that it wasn't glazed in the way I associate with teriyaki cooking. I also enjoyed the change-of-pace represented by the sweet Shrimp with Fresh Mango (again with tasty shrimp, right), which could function almost like a dessert in a meal shared by several people (an ideal way to enjoy the fare at Lilli and Loo).

And then there are the Happy Hours. It's been tough work, but for your sake, dear reader, I've been making my way through the Lilli and Loo cocktail menu. My favorite so far is the lychee martini.

As CeliacChick Kelly and Allergic Girl Sloane have noted, Maggie and the rest of the gang at Lilli and Loo are eager to please and willing to accommodate other dietary requests. Just try to give them a "heads up" to ease matters for everyone concerned. And, speaking of heads, I agree with Kelly that the loo at Lilli and Loo is worth a visit, too. (Thanks to Ben Cappel for coming up with the "loo" angle.)

Something else that's exciting about Lilli and Loo is that it is just one of the restaurants and food enterprises in which Vanessa Phillips and her family have a hand. From talking with Vanessa's father, I understand that the family hopes to serve gluten-free customers in various NYC locations, including the Upper West Side. Having GFRAP restaurants there would certainly help to complement the string along the Upper East Side. CeliacChick Kelly has been covering some of the most recent developments.

MEETUP: GLUTEN-FREE FOOD IN NEW JERSEY

Ben Cappel, head of the Jersey City Celiac Disease Meetup Group (JCCDMG) and member of many other celiac disease meetup groups, is organizing and facilitating transportation to a very promising vendor fair (and shopping opportunity) in collaboration with the Gluten-Free Market of Fair Lawn, New Jersey.

The current line-up for the vendor fair includes Everybody Eats, Outrageous Foods, Shabtai Gourmet, Mr. Ritt's Bakery, Epicure Gourmet, and Full Flavor Foods (of Michigan).

The event is scheduled for noon on Sunday, January 27, 2008. Transportation may be available from the Grove Street PATH Station around 10:30 AM. There will also be a dinner at Maggiano's Little Italy in Hackensack, though please note that the restaurant is not in the Gluten-Free Restaurant Awareness Program (GFRAP).

Interested? See the pages of the Jersey City Celiac Disease Meetup Group (JCCDMG) and the New York City Celiac Disease Meetup Group (NYCCDMG) to register and get more information.

BREAKING: FAIR WEATHER FOR HEATHER!

And now for some good news: The bar Heathers got a green light for its liquor license renewal at Monday night's Community Board 3 committee meeting!

When the bar came up on the agenda, the committee looked over the bar's complaint history, heard supportive remarks from two community members, acknowledged a letter of support cosigned by yours truly and Ben Cappel of the New York City Celiac Disease Meetup Group, and asked several choice questions of bar owner Heather Millstone.

Then came the announcement that the committee was willing to go ahead with the license renewal! After fretting over this situation for months, I was happy to see Heathers and the committee come to a resolution that would not interfere with the bar's flow of gluten-free cider and beer.

So it's time to celebrate--Lower East Side style! (Just remember: Keep the noise down and don't disturb the neighbors.)



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