Vinegar Revisited. Again.

Distilled Vinegars are Gluten-Free, Just Check Others

The dietitian Tricia Thompson, who did the research that measured significant wheat contamination in oat brands including McCann's, recently collaborated with other gluten-aware dietitians in addressing concerns about the possibility of gluten in vinegar.

Their findings—summarized in Tricia's blog post, "Vinegar: When Is It Gluten-Free?"—were generally consistent with research published in Gluten-Free Living suggesting that the vast majority of common vinegars are gluten-free.

The main points:

Distilled vinegar is gluten-free, no matter what the source material may be, because (the ancient and medically reliable process of) distillation separates all proteins from the final product.

"Vinegar" simply listed as an ingredient can be considered safe—made from apples.

Check non-distilled and flavored vinegars. The most common non-distilled vinegar that would be of concern is malt vinegar; some Asian black rice vinegars might also merit concern.

The contributors to this recent statement are all dietitians notable for their expertise concerning celiac disease: In addition to Thompson, they include Cynthia Kupper of GIG, Melinda Dennis of Boston's Celiac Center at Beth Israel Deaconess Medical Center (CCBIDMC), author Mary K. Sharrett of Nationwide Children's Hospital of Ohio (NCHO), Anne Lee (formerly of the Celiac Disease Center at Columbia University--CDCCU), and Pam Cureton of the University of Maryland Center for Celiac Research (UMCCR).

This Sunday: Chef to Plate Awareness Campaign

Support Your Local "Gluten-Free Aware" Restaurant!

In case you hadn't heard...this Sunday offers an opportunity to say "thank you" to restaurateurs who support people on gluten-free diets. Organized by the Gluten Intolerance Group (GIG), the Chef to Plate National Awareness Campaign urges you to patronize these supportive restaurants [PDF] on Sunday, May 3, 2009. The goals of this event are to

Spread national awareness of celiac disease and gluten intolerance conditions during May, Celiac Awareness Month

Spread recognition and awareness of restaurants with gluten-free menu options

Bring Peace of Mind to persons with gluten intolerances when dining out

Join restaurants across the country in a day of awareness

If you'd like to join with others on Sunday evening, the New York City Celiac Disease Meetup Group (NYCCDMG) will gather for a prix fixe banquet at GustOrganics.

Mangia!

"Hospital Stays Made Safe"

GIG Offers an Online Dietary Guide

I continue to feel that "there ought to be a law" when it comes to providing medically appropriate food to people in institutions such as hospitals, nursing homes, and prisons. It just seems to be common sense that people on medical gluten-free diets receive gluten-free food in medical institutions—or anywhere else where they have little or no ability to control food procurement or preparation.

So far there's no such law, but at least the Gluten Intolerance Group (GIG) recognizes the problem. As has been reported, including Nancy Lapid's Celiac Disease Blog, GIG recently created an online guide called Hospital Stays Made Safe [PDF]. It's not a cure-all, but at least it's a step in the right direction.

And it's one of numerous online publications offered by GIG. Check 'em out!

For an idea of what we're up against, here's a glimpse of some "normal" hospital food. (The footage comes from across the proverbial pond, where Prince Charles and Coeliac UK have also advocated on behalf of hospital patients.)



Source (00:35)

More Extreme Fundraising!

What does one have to do to raise money (and awareness) in support of a gluten-free cause?

We've seen a walk on the Appalachian Trail.

We've seen a swim through the waters off Alcatraz.

And now Michele Wallick (who has written for Gluten-Free Living) and her husband Greg, of GF Adventures, are sailing 7,000 nautical miles across the Atlantic from Cape Town, South Africa to the Brazilian islands of Fernando de Noronha.

They hope to raise $14,000 for the Gluten Intolerance Group (GIG) and the University of Maryland's Center for Celiac Research (UMCCR) while raising awareness that an estimated 2,700,000 Americans with celiac disease remain undiagnosed.

Well, they certainly caught my attention. I wish them well!

Do you think sailing is a breeze? Consider this video, and remember that you can make donations here!



Source (6:06)

Gluten-Free, Politically

It's a very good morning over at Gluten-Free NYC, filled with the promise of positive change—and not just because of enthusiasm over Barack Obama's victory. As the nation moves toward a fresh start and the possibility of more unity, it strikes GFNYC that a health policy that raises public awareness of celiac disease is something that both Democrats and Republicans can agree upon.

As you might recall, GFNYC supported Barack Obama but noted that both of the big party presidential tickets could offer improvements for people with celiac disease. Gluten Free Blog expressed a similar position in favor of Obama.

As John McCain and Sarah Palin return to their regular jobs as senator and governor, they can still follow through on their concern for "special needs" households, including those affected by celiac disease and associated conditions, including Down Syndrome and, possibly, autism as it is currently being diagnosed.

Palin in particular should also be aware that millions of Americans may still be undiagnosed with celiac disease, as her prominent supporter Jane Swift and her outspoken advocate Elisabeth Hasselbeck are known to have the condition. So perhaps the Anchorage GIG group can do something with that.

Closer to home, Kemp Hannon retained his seat in the New York State Senate. He has recognized that early screening for celiac disease is an idea worth consideration.

As far as the national government is concerned, GFNYC notes that Representative Nita Lowey, Senator James Inhofe, and Senator Ben Nelson all remain in office. They might not agree on much, but each has advocated on behalf of people with celiac disease.

Also remaining in office is Senator Hillary Clinton, an advocate of universal health care whose husband Bill recently talked up the value of "gluten-free" cassava.

Presiding over all of these politicians will be Barack Obama, a supporter of preventive medicine and universal health care for children who recognizes that some government programs are worth additional funding even during budgetary crises. GFNYC hopes that the FDA's ability to enforce food labeling accuracy will improve under his administration.

Celiac disease might not mean much to the general population in the great scheme of things. But sensible, progressive policies regarding celiac disease should find a place on the agenda as American leaders search for ways to build unity and consensus.

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.

Outback Alert: GIG/GFRAP Responds

Some Questions Remain Unanswered

In response to disclosures that at least some Outback restaurants have been using bread to fight the clumping of brown sugar, Cynthia Kupper issued the following statement Wednesday morning:

Gluten-Free Diners,

Gluten-Free Restaurant Awareness Program (GFRAP) and Gluten Intolerance Group of NA (GIG) would like to advise you what we have been doing to resolve the issue about bread being used in some brown sugar containers at various Outback Steakhouse locations to prevent hardening of the brown sugar.

This issue came up a few months ago. As soon as we heard about it, we immediately contacted Outback Corporate offices and followed the chain of emails showing the corrective actions taken at that time.

Recently this issue has come up again. I sent the notices posted by Connie Sarros to Outback and again very promptly, they responded (on a Sunday -- no less). I have continued to send every post on the subject and am addressing the issue at the top levels of Outback, all the way down to the local restaurant.

Since it has come to Outback's attention that this was not an isolated case, they are in communication with all restaurants to change this practice at a number of levels, including adding information into their regular communication and training channels. As with all things in large corporations, it takes time to see the change fully implemented -- but they are working on it.

It is important that the local restaurants not only understand the potential dangers of this practice, but also follow the corporate policies set in place. GFRAP has a strong relationship with Outback regarding their menus and training. We communicate with them on a weekly basis. Rest assured this issue will be resolved.

GFRAP and the GFRAP participating restaurants appreciate feedback about your dining experiences and the program. Please feel free to send comments to: www.glutenfreerestaurants.org/feedback.php.

Cynthia Kupper, RD, Executive Director
Gluten Intolerance Group of North America

This statement leaves some important questions unanswered. Examples:

What items identified as gluten-free are potentially contaminated because brown sugar is an ingredient?

How, exactly, is the problem being addressed?

How will the public be notified when the problem has been addressed?

Kupper writes that the problem came up some months ago, but there is evidence that the problem existed as far back as April 2006. How did the problem exist—and persist—for so long, even after corrective measures were taken? How will this flaw be fixed going forward, with regard to Outback as well as the other GFRAP restaurants?

What does Outback have to say about this?

Outback Alert

Brown Sugar May (or May Not) Be Cross-Contaminated

It is possible that some Outback restaurants might bring their brown sugar into contact with bread to prevent clumping. So it seems that, for the moment, people on gluten-free and wheat-free diets should inquire at individual Outbacks as to whether any part of an order that is supposed to be gluten-free might be made with the cross-contaminated sugar. One item to ask about would be the sweet potato; I'm not sure what else might be made with brown sugar.

Outback has offered a gluten-free menu [PDF], made in coordination with the Gluten Intolerance Group (GIG) and then GIG's Gluten-Free Restaurant Awareness Program (GFRAP), for a number of years. The GFRAP roster currently includes 786 Outback restaurants.

Questions about possible cross-contamination in the brown sugar seem to have arisen at least as far back as April 2006. More recently, the blog Grain Damaged reported that cookbook author Connie Sarros offered the following in her "Newsletterette."

Last month, I posted that Outback Steakhouse places a piece of wheat bread in their brown sugar to keep it fresh. I called four different Outbacks in my area and all four agreed that they do place a piece of bread in the bag of brown sugar. Since that time, I have learned that each Outback Steakhouse determines whether or not to add the bread; this decision is based on how quickly they use up the brown sugar and whether or not the bread is needed. It is possible that the Outback near you may not use the bread. It is best to ask the manager once you arrive at the restaurant or call ahead.

On the International Celiac Disease Mailing List, Betty Barfield (President of the North Texas Gluten Intolerance Group (NTGIG)) shared correspondence she had with Gina Marcoff, Vice President of Training & Development for Outback Steakhouse. Marcoff acknowledged the issue in the correspondence.

The restaurants really do handle the brown sugar differently. This practice was brought to our attention recently, and it is something that we need to be aware of for those who are gluten intolerant. We are preparing to film a training video for October's meeting, and we've decided to focus on gluten intolerance, so it's a great topic for us to address!

A mailing list member from Indianapolis chimed in with the following:

Outback has long been a "friend" to people with celiac -- so I hope that folks won't just be too afraid to go there now. At least in our city, they have such a positive attitude toward making sure their GF Menu is safe -- and I think this helpful attitude is a top-down way of doing business.

This is what I found out about our local Outback:

-- YES, they do put piece of bread in the brown sugar to keep it fresh.

-- BUT, when someone orders from the GLUTEN FREE menu (again, this is the policy at our local Outback -- it does not speak for others), the waiter codes that order as gluten free, and they know to open a fresh bag of brown sugar, and that is what is put on the sweet potato.

-- In fact, she told me that the manager of their restaurant location is usually the one who manages the plating of all GF orders, and he is STRICT! If anyone else is doing it, he watches over like a hawk.

*** As for me, I will know now to always ask, at any Outback (and perhaps ANY restaurant now!), if they ever put bread in the brown sugar. But it seems an easy and straightforward thing to ask -- and probably not too much trouble to also ask (if the case) that a new package of brown sugar is opened for one's potato -- or just decide to leave it off. Mostly, I really encourage people to COMMUNICATE with and not boycott their local Outbacks -- which, I think, was also the sentiment of Betty Barfield's note as well.

I will try to add updates about this as they become available. It is a shame that this problem—which seems relatively minor as far as potential cross-contamination is concerned—has existed for so long, and that neither GFRAP nor Outback has been very proactive in addressing and correcting it. I'm glad that Outback plans to deal with it on a corporate basis a month from now, but I'd feel a lot better if I knew that the company were dealing with it immediately—and I'd feel even better if Outback had taken care of this problem already. It might be time for a soup-to-nuts review of Outback's—and GFRAP's—standards and practices.

Something else can be learned from this: Mixing bread and brown sugar to break up the sugar seems to be a common practice even though this source says that the bread isn't necessary. So that's something else to keep in mind when trying to avoid cross-contamination. And, if bread isn't even necessary to do the job, then it would be good to spread the word about that—perhaps starting with Outback.

"Gluten-free diets gaining in popularity"

Recent Article in USA Today

"Meet the latest dietary bad boy: gluten," starts Kim Painter's USA Today article "Gluten-free diets gaining in popularity" (August 17, 2008).

Painter notes that "Marketers estimate that 15% to 25% of consumers want gluten-free foods — though doctors estimate just 1% have celiac disease, the best-defined and most severe form of gluten intolerance, says Cynthia Kupper, executive director of the non-profit Gluten Intolerance Group of North America (GIG)." Painter also quotes American Dietetic Association spokeswoman Dee Sandquist as saying that there is "a fad aspect" to the diet among college students.

Painter cites Dr. Alessio Fasano as noting that 110,000 Americans have been diagnosed with celiac disease, up from 40,000 in 2003—but that about 2,890,000 remain undiagnosed. He notes that, besides those people, there are those who may react poorly to gluten even though they do not test positive for celiac disease. Sandquist surmises that others might feel better on a gluten-free diet because they may be eating more fruits and vegetables and less fast food and processed food.

Dr. Peter Green (right) of the Celiac Disease Center at Columbia University (CDCCU) stresses the importance of getting an exact diagnosis from a doctor, which is best done while on a gluten-inclusive diet.

If, as the article suggests, the growing "popularity" of gluten-free diets might offer more and better dining options, just imagine how much better it would be if the millions of people with undiagnosed celiac disease received correct diagnoses. Their health would improve while their numbers would enhance a fad-proof gluten-free market.

A sidebar identifies the following trouble signs that one should discuss with a physician:

• Frequent diarrhea
• Frequent constipation
• Frequent bloating
• Unintended weight loss
• Failure to grow (in children)
• Anemia
• Unexplained fatigue
• Frequent headaches
• Bone or joint pain
• Itchy skin lesions
• Tooth enamel defects
• Mouth ulcers

KEEPING KIDS HEALTHY: CELIAC DISEASE


















The celiac disease episode of Keeping Kids Healthy turned out to be an outstanding opportunity for families to learn about celiac disease, so I'm very sorry I didn't post about WNET's Saturday morning broadcast sooner than Friday night.

You can, however, get an idea of the episode in this very post and the episode's web page, and even order the episode on DVD for private or public screening. The segment used two case studies—one revolving around a little girl (Emma Teitelbaum), the other involving a teenage boy (Colin Leslie)—to discuss symptoms of the condition, the length of time that can pass before doctors even suspect it, ways that families can adjust to a gluten-free diet, and the reasons for family testing and continued family vigilance even when tests come out negative. (Celiac disease, which has a strong genetic association, can manifest at any time.)

Among those appearing on the segment were the show's host, Dr. Winnie King, as well as Dr. Peter Green (pictured), Dr. Govind Bhagat, and Cynthia Beckman of the Celiac Disease Center at Columbia University (CDCCU), and George Chookazian of Foods by George.

Like Susan Cohen's video Generation Gluten-Free, this episode of Keeping Kids Healthy seems very comfortable with its subject matter. Just about my only quibble is that it refers people to the Celiac Sprue Association but doesn't mention more organizations, such as the Gluten Intolerance Group (GIG), that have a better track record in terms of accuracy.

Photo of television: David Marc Fischer

DOCTORS WITH DH: BRIEF TALES OF LONG DIAGNOSES

I'd like to share two tales of dermatitis herpetiformus (DH) that I've heard over the past months.

An internist who was experiencing an itchy skin rash consulted several doctors before getting a DH diagnosis.

A dermatologist(!) who was experiencing an itchy skin rash consulted several doctors before getting a DH diagnosis.

Yes, it's true: Even doctors--and even dermatologists--have trouble getting a DH diagnosis!

Perhaps the most prominent DH specialist in the United States is Dr. John Zone of the University of Utah, which is located somewhere east of New York City. Here are patient and doctor pages from the Celiac Disease Center of Columbia University, which is located in New York City.

And here is the DH page of the Gluten Intolerance Group (GIG).

HEY, STATEN ISLAND!

Staten Island now has an Outback of its very own--and also a Carrabba's Italian Grill of its very own--at the Staten Island Mall!

Both chains offer gluten-free menus created in cooperation with the Gluten Intolerance Group (GIG).

Here's a gluten-free menu for Outback (PDF) and here's a gluten-free menu for Carrabba's (PDF).

TED'S MONTANA GRILL

Ted's Montana Grill offers special guidelines for patrons on the gluten-free diet (as well as other special diets). When I visited the midtown Manhattan location during the holiday system, the staff seemed totally clueless, but more recently I stopped by and spoke with chef Jesse, who seemed much better informed. He said that restaurant headquarters might actually be preparing bona fide special diet menus, which I imagine would be at least as user-friendly as the guidelines its been using.

Gluten-free locals and tourists could benefit greatly if the Manhattan location of Ted's Montana Grill proves itself reliable. Located in the Time-Life Building, it's convenient to museums, Rockefeller Center, City Center, Carnegie Hall, and Times Square and the upper theater district. It would be great if the restaurant heightened its credibility by coordinating its efforts with GFRAP and/or the Gluten Intolerance Group Corporate Restaurant Program.