Lindsey Ellerson Report on ABCNews.com

News Report on Prevalence Studies; GMA Story on Being GF

Yesterday ABCNews.com producer Lindsey Ellerson posted "Living With Celiac Disease: One Woman's Story." Subtitled "Gluten Intolerance Increasingly Common, According to New Mayo Clinic Study," the article covers a lot of ground: It profiles Vanessa Maltin, reports on the recent Mayo Clinic study on prevalence and mortality, and includes the very important message, "Celiac disease now affects nearly one percent of the U.S. population, [Dr. Joseph] Murray told ABC News, but the vast majority of people living with celiac disease, do not know they have it."

Also of note is the tag line for the article: "The author of this article was diagnosed with celiac disease in 2004." So hey, Ms. Ellerson (right): Thank you for being "out" as a gluten-free newsperson!

Ellerson shared her own story in the May 9, 2007 Reporter's Notebook article "Top Chefs Support Gluten-Free Living."

My personal experience with celiac disease involved only unprovoked fainting spells that occurred periodically during my third year of college while studying abroad in London.

After numerous unexplained episodes of passing out on the Tube, at the Tower of London and while touring Trafalgar Square, I flew home for some medical tests.

I soon learned I was so severely anemic that I would require a blood transfusion if I wanted to return to England to complete the semester. I remained in the United States and after three months of dizziness, lack of energy and nausea, doctors were able to make the diagnosis of celiac disease.

The online package also includes a May 12, 2009 Good Morning America segment on "What you can eat if you have to go gluten-free." I'm not so keen on this tie-in with Elisabeth Hasselbeck's book The G-Free Diet featuring dietitian Ashley Koff (described as "a contributor" to the book). It's not hard to see connections, as Koff, like Hasselbeck, seems very eager to broaden interest in being gluten-free to a very broad audience, as if finding the millions of undiagnosed people with celiac disease wouldn't be enough of an achievement at the moment. True, Koff says that people curious about their symptoms should see their physicians ("that's critical")...but then she goes on to talk about autism, sensitivity, and intolerance—subjects that aren't necessarily likely to get much validation from conscientious physicians at this time. Like Hasselbeck, Koff also tries to seize on a weight-loss angle for the diet. Furthermore, she touts a probiotics line that she works with, vaguely explaining that it is the only one "clinically shown to address all of the digestive problems." It all adds up to overselling, in my opinion.

Let's hope that, with informed newspeople like Lindsey Ellerson, ABC will develop and retain sources such as Dr. Murray and dietitians affiliated with celiac disease centers and not feel as much of a need to build up The G-Free Diet, which is more of a ABC celebrity book than a reliable health book.

Gluten-Free Cooking on Emeril Green

Vanessa Maltin of the National Foundation for Celiac Awareness (NFCA) announces a segment of Emeril Green on gluten-free shopping and cooking to be aired Tuesday, October 7, 2008 at 8:30pm on Discovery Green.

During this episode Emeril will help a newlywed couple learn to cook delicious gluten-free food. The wife was recently diagnosed with celiac disease and wants to make sure she can cook awesome food for her new husband! Emeril takes the couple on a shopping trip through the new Whole Foods store in Virginia and just happens to bump into Vanessa in the bakery! Vanessa will share tips for gluten-free cooking and baking and offer advice on various gluten-free grains and flours.

In the episode you'll learn to make Pizza, Gazpacho, Italian Salad, and a delicious Pasta dish.

Emeril's previous gluten-free coverage includes a segment on New Orleans cuisine and a segment on gluten-free, dairy-free, and nut-free cooking for a toddler, as previously noted at Gluten-Free in the Shaolin.

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

A BIG WEEK FOR CELIAC TV


















As has been reported elsewhere, it seems that today (Wednesday) Joy Bauer will present a Today show segment on gluten-free diets for kids.

And CNN Newsroom is in the midst of a celiac week featuring daily segments hosted by anchor Heidi Collins, spokesperson for the National Foundation for Celiac Awareness. Here's the schedule:

Monday: What is celiac disease?
Dr. Aline Charabaty of Georgetown University Medical Center's Division of Gastroenterology will join CNN's Heidi Collins in the Newsroom to discuss the basics of celiac disease, diagnosis and treatment with a gluten-free diet.

Tuesday: "Non-Gastrointestinal Complications of Celiac Disease"
Dr. Richard Mandel of the Center for Advanced Orthopedics in Philadelphia will discuss the orthopedic complications of celiac disease and celiac patients can improve bone health. Also in the CNN Newsroom, Dr. Robert Mangione, dean of the St. Johns University College of Pharmacy, will explain how gluten in medication can impact celiac patients and discuss the immediate need for labeling of gluten in medication.

Wednesday: "Gluten-Free School Lunches"
Rep. Steve Kagen (D-WI) will offer tips for safely sending celiac children to school and federal school lunch requirements to provide gluten-free meals.

Thursday: "Hope with Celiac Disease"
Vanessa Maltin of the National Foundation for Celiac Awareness and Beyond Rice Cakes author will be on CNN discussing new resources available to help patients cope with celiac disease including cookbooks, video podcasts, cupcake parties and celiac camps.

Friday: "Gluten-Free Dining in Restaurants"
Tips for managing food allergies at restaurants and how patients can ensure a safe dining experience.

Photo: David Marc Fischer

CNBC ON THE MONEY SEGMENT

CNBC recently featured an upbeat On the Money segment (Friday, October 5, 2007) in which Scott Cohn reported on the improving situation for gluten-free consumers following a long period of being ignored by corporate America. The item quotes Vanessa Maltin of the National Foundation for Celiac Awareness (NFCA) to the effect that the market is projected to reach $1.7 billion by 2010. Maltin also praised Bell & Evans and Bob's RedMill for their gluten-free products.

Coverage also included interviews at GFRAP restaurant Risotteria. One interview cited soy sauce as a source of "hidden gluten"—okay...but she also mentioned "all the preservatives" in canned foods, which might not have been the best example as it sounds like an exaggeration. Cohn mentions that an estimated 3,000,000 Americans have celiac disease and also mentions that there are an additional 10,000,000 Americans with "gluten intolerance." I'm not sure where he got that latter figure.