Turnaround for the French Meadow Bakery?

Back in 2006 the French Meadow Bakery finally got in hot FDA water for marketing spelt bread as wheat free. Lately it's attempted to appeal to wheat-free and gluten-free consumers with products that are authentically gluten-free. So far I've seen the GFCO-certified frozen brownies and cookie dough...and now I've seen a video that discusses celiac disease and the gluten-free market.

It's not too bad and worth watching, though one can find quibbles with it. The video presents gluten as something as damaging as Drano to people with celiac disease; I'm not expert on the subject, but I think Drano is actually more dangerous. It also claims that celiac disease is uniquely treatable by diet, but I believe that people with food allergies fall would qualify.

But enough prattling. Let's go on with the show!



Source (9:45)

Choose a Charity!

Triumph Dining Fundraising Follow-Up

Triumph Dining aimed very high when it tried to give away 15,000 cards to raise $10,000 for a gluten-free cause, but I'm pleased to note that Triumph plans to donate $1,000 after giving away 1,500 cards—and you get to choose the recipient (if you share some info about yourself)!

You've got until October 15.

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

Celiac Disease in Men (and Women)

Did JFK have celiac disease? Adam Voiland of U.S. News and World Report uses that question as the hook in "Celiac Disease in Men Threatens Bone Health," a September 19, 2008 overview of celiac disease that emphasizes its effects on men and draws upon the research of Dr. Peter Green. "One of Green's articles, published in the Scandinavian Journal of Gastroenterology (SJG), shows that celiac disease appears to progress faster in men, deprive men's bodies of more needed nutrients, and cause particularly acute damage to bones," writes Voiland.

Regular readers of this blog should already know that adults diagnosed with celiac disease should be tested for osteoporosis, and that people with low bone density (especially when the cause is a "mystery") should seriously consider being tested for celiac disease. People diagnosed with coexisting celiac disease and osteoporosis have a good chance of improvement after going on a gluten-free diet that includes calcium. As Voiland puts it in his article, "For people who do have both diseases, research has shown that adopting a gluten-free diet halts the progression of osteoporosis and even improves bone density by 10 percent, Green says."

Discount on Baked Goods at Whole Foods

Select locations of Whole Foods in the greater metropolitan area are offering $2 discounts on items from the Whole Foods Market bakery section through the end of October. The "Take $2 off purchases of $10 or more" promotion includes gluten-free goods baked by Whole Foods as well as other items, such as those made by Foods by George and Aleia's. So if you've been curious about Aleia's but turned off by the Whole Foods markup, this discount might lessen the pain.

The offer applies in some—but apparently not all—locations in Connecticut, New Jersey, and New York, including all five—yes, five—Manhattan locations. (Apparently there's a new Whole Foods in Tribeca at 270 Greenwich Street.) To the best of my knowledge, no other boroughs are represented.

Tuttoriso covered in Staten Island Advance

Staten Island Advance reporter Pamela Silvestri writes up the GFRAP restaurant Tuttoriso in her September 18, 2008 article "Defloured."

Silvestri writes, "It is important to recognize the importance of Tuttoriso for Staten Islanders, particularly those who suffer from specific carbohydrate, milk protein or wheat allergies. Most importantly, this is one of the few Staten Island restaurants where significant items -- breads and a respectable variety of baked goods -- are being made from scratch. Without a doubt, this vertical control over ingredients helps indemnify a business geared to those with food allergies."

Silvestri praises the baked goods and home cooking as well as the restaurant's efforts to cater to people on special diets, but she also notes slow service (somewhat understandable considering the home cooking) as well as the lack of complimentary "welcoming" appetizers (an absence certainly not unique to this GFRAP restaurant).

I can see where Silvestri's coming from, but I'd like to stress just how good the gluten-free sandwiches, desserts, and drinks can be. (I'm still making my way through the menu, so I'm not yet ready to pass judgment on many other offerings at Tuttoriso.) If you haven't yet sampled the restaurant's breads and baked treats, I urge you to make the journey to Tuttoriso and give them a try—especially while the weather is still pretty good. Only a short walk from the ferry landing, Tuttoriso is a great destination for gluten-free day-trippers, date-trippers, and tourists as well as commuters ferrying between Staten Island and Manhattan. Kerrie at Gluten-Free in the Shaolin goes so far as to call the restaurant a "gift."
















Photo: David Marc Fischer

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.

Shameless Shirt Promotion

When I launched the Gluten-Free NYC Boutique last year, I planned to donate a portion of the revenue to a gluten-free cause. So today I'm very happy to announce that the first donated portion is on its way to the Westchester Celiac Sprue Support Group (WCSSG). If you're a regular reader of this blog, you already know I'm a fan of this support group, which has played a critical role in improving the lives and the health of people with celiac disease in the greater metropolitan area. The check is in the mail, WCSSG!

And remember: You can find designer Debbie Glasserman's Gluten-Free Alphabet (below) and other designs at the Gluten-Free NYC Boutique.

Vendors Announced for Westchester Support Group Meeting

Meeting Scheduled for Sunday, September 21, 2008

As mentioned previously, the scheduled speaker for next week's meeting of the Westchester Celiac Sprue Support Group (WCSSG) is Dr. Peter Green, who is to offer "an update on the diagnosis, treatment, ancillary conditions and research into a cure for celiac disease," as the group's newsletter puts it. "Come early if you want a seat—there is usually an overflow crowd for this important presentation of the most important information available," the newsletter advises.

The meeting takes place from 2-4pm at Phelps Hospital in Sleepy Hollow, NY. Discounted copies of the book Celiac Disease: A Hidden Epidemic will be available. Also represented as vendors are Joan's GF Great Bakes (you might want to bring a cooler to keep the bagels and such frozen) and Everybody Eats, Kettle Cuisine, Gluten Free Gourmet Solutions, and Three Dogs Gluten-Free Bakery (formerly Baking with Brodie).

NFCA Fundraising Campaign

Matching Grant Can Yield $90,000!

I almost forgot that today is Celiac Awareness Day—the birthday of celiac disease research pioneer Samuel Gee!

How might one celebrate this event? Well, having just covered the recent webinar about Gluten in Medication led by the National Foundation for Celiac Awareness (NFCA), I figure it's a good time to mention that the group is in the midst of a fundraising campaign to raise $45,000 by September 24, 2008. A donor will match that amount, raking in $90,000 for the NFCA.

A nice thing about this effort is that the NFCA's Vanessa Maltin has described some of the ways the money would be used. Helpful!

Just to give you an idea of where the money will go, here are a few of the programs:

*Gluten in Medications.* Do you know all of the ingredients in all of the medicines that you take? Probably not! Current United States regulations do NOT require manufacturers to label the inactive ingredients in drugs. These inactive substances are called excipients and can be any one of a number of starches including wheat, corn, potato or tapioca. To help the celiac community and medical professionals understand the problem of gluten in medications, the NFCA partnered with the American Society of Health System Pharmacists. Together, our groups have held two educational sessions for doctors and pharmacists and have created resources for both patients and medical professionals.

*School Lunches.* Are you the parent of a child with celiac? If so, this resource is for you! With the help of the United States Department of Agriculture, the NFCA developed guidelines to help children and parents navigate their school's meal program. The guidelines explain federal laws and provide step-by-step instructions for getting a child special gluten-free meals at school. Additionally, the NFCA is working with an amazing group of school nurses and school psychologists to create a Getting Started Guide for Teachers to help ensure that every child is safe in the classroom.

*Related Diseases.* Celiac disease is directly related to several other diseases and conditions. The NFCA has worked with leading researchers and organizations to provide the latest information on how celiac disease and the gluten-free diet is related to these conditions. Diseases include: Dermatitis Herpetiformis, Type 1 Diabetes, Thyroid Disease, Infertility, Osteoporosis, Depression, Sjogren's Disease, Juvenile Idiopathic Arthritis, Intestinal Cancer, Peripheral Neuropathy, Down Syndrome, Turner Syndrome, William Syndrome, Liver disease and migraine headaches.

*Lifestyle Improvment Webinars:* The NFCA is working with a variety of professionals to bring you two sets of lifesytle seminars. All are available free of charge and can be viewed by anyone in the world! All you need is a working internet connection and a computer! There are two sessions every month. One is for New Patients. The others will be a variety of cooking lessons that will teach you to best utilize gluten-free products! Get excited!!

*Athletes for Awareness:* The NFCA has pulled together some of the top Athletes with celiac disease to bring you the Athletes for Awareness blog and PSA. Every month these 4 superstar athletes will share their stories of living with celiac disease while participating in competitive sports.

You can donate here.

Gluten in Medication Seminar: Follow-Up

I liked today's online seminar on Gluten in Medication. It was refreshing to get the medical overview from Dr. Daniel Leffler of Boston as well as the perspectives of pharmacists Priti N. Patel and Gerry McAvoy.

In Vanessa Maltin's remarks, she described the difficulty she recently faced when trying to get answers about gluten in medications. After weeks, she still hadn't gotten clear answers.

I think Vanessa's experience is common and symptomatic of bad practices permeating the marketing and regulation of over-the-counter and prescription medications. The regulation of those items is the responsibility of the FDA, but (as pointed out at the seminar) the FDA has not enforced rules about identifying sources of botanical ingredients—even though such rules have been in place since 1975. 1975! On top of that, the rules are not even as helpful as those governing food labeling. That's sad, considering that whereas people should be eating food to stay healthy, people should be taking medications to improve or at least stabilize their endangered health. They might not be well enough to interrogate manufacturers about gluten content, and their conditions might not afford them the time it might take to properly vet medications regarding their safety in terms of gluten.

The institutions represented at the seminar—the National Foundation for Celiac Awareness (NFCA), the American Society of Health-System Pharmacists (ASHP), the St. Johns University College of Pharmacy (STUCP), and the Celiac Center at Beth Israel Deaconess Medical Center (CCBIDMC)—all seem to be onboard when it comes to reforming the system, including the FDA, which needs to be strengthened to be better able to uphold its own standards.

One piece of information offered at the seminar was that the FDA has built a database currently listing ingredients of more than 4000 medications. Out of those medications included in this Daily Med database, 1320 contain starch, which seems to be the main "warning flag" for those on the lookout for gluten. Of those, only three have wheat identified as a source for the starch—but 66% of the starch sources are not identified at all. So we just don't know about those.

It's possible that the danger from gluten in medications is relatively minor, but at present we just don't know enough because of the poor practices in the industry that keep the content of the products a mystery, even in defiance of long-existing regulations. Those regulations interfere with the ability of medical professionals to prescribe and dispense drugs knowing that they will do no harm. And the situation is worse when it comes to supplements, according to Patel and just about everyone else who knows how the industry works, because supplements are governed by even fewer regulations.

Three online sources of information offered at the seminar are Gluten and Medications, Celiacmeds.com, and the NFCA site. I know that Clan Thompson also maintains lists of over-the-counter and prescription drugs. Between those resources and the FDA database, there might be some unnecessary duplication of effort that might be rechanneled into the creation of more accurate and comprehensive listings that would be freely accessible to the public, especially with adequate funding. A similar list could be established for food.

Gluten in Medications: Free Online Seminar

The National Foundation for Celiac Awareness (NFCA) plans a free online seminar on Gluten in Medications from 11:30am-1:00pm EST on Friday, September 12, 2008. You can register for it here. [Update: Try this for registration.]

The NFCA's Vanessa Maltin writes

On Friday, September 12, Stop & Shop, in collaboration with the National Foundation for Celiac Awareness, will host a Gluten in Medications Education Session, sponsored by the American Society of Health-System Pharmacists (ASHP).

Attend this FREE, live session and learn everything you need to know about gluten in medications! All you need is a phone line, Internet connection and computer! If you're reading this, I'm guessing you have all three!

* * *

The program will focus on educating pharmacists, other medical professionals (physicians, nurses, and dietitians) and the public about celiac disease, the issues of gluten in medication, and how celiac disease may affect normal absorption of both prescription and non-prescription drugs.

Who should attend: Pharmacists who practice in hospitals and health systems, community pharmacies, chain and grocery stores pharmacies; as well as pharmaceutical company representatives, national pharmacy organizations, medical professionals, and others interested in learning more about this topic. This means all of you out there with celiac!

Learning objectives: Upon completion of the CE program, attendees will be able to: define celiac disease and its pathophysiology; articulate the suspected incidence of celiac disease; List signs and symptoms; describe potential sources of gluten in medication; identify reactions celiac patients may have from drugs; describe current United States and International guidelines for labeling; and discuss ways that pharmacists and pharmaceutical manufacturers can help patients with celiac disease use medicines safely.

* * *

Session Speakers:

Welcome
Alice Bast, National Foundation for Celiac Awareness Executive Director

What is Celiac Disease?
Daniel Leffler, M.D., Director of Clinical Research, The Celiac Center at Beth Israel Deaconess Medical Center

Gluten in Medication & When is Gluten-Free Really Gluten-Free?
Priti N. Patel, Pharm.D., BCPS, Clinical Professor, St. Johns University College of Pharmacy

Excipients & Stakeholders
Gerry McEvoy, Pharm.D., ASHP Vice President, Drug Information

Parallels with the Food Allergen Labeling and Consumer Protection Act & What You Can Do to Help Celiac Patients
Vanessa Maltin, Director of Programming & Communications, National Foundation for Celiac Awareness

ACT is Gluten-Free

Here's info that can put a smile on your face: "All of our current ACT products are gluten-free," a Consumer Affairs Representative from Chattem informed me today.

Be Prepared!

I admit it: I don't have an emergency preparedness kit. Do you?

We should all have a "go kit" that's actually ready to go. It's not a big deal. Think of it as a way to store certain things—like water, a battery-operated radio, a working flashlight, and gluten-free nutrition bars and vitamins and medications—in one place, just in case. Having a "wheelie" contraption to help you move them around is a good idea too.

So put together a "go kit" ASAP! Don't put if off!!

Here are the recommendations from the Department of Homeland Security (DHS), no less.

Oh—and Happy National Preparedness Month 2008 to one and all!



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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?

A Gluten-Free Tip

Here's a tale of a man who gives gluten-free restaurant patrons a good name—especially if his credit turns out to be good!