Gluten-Free Cartoonist

Did you know that there's a gluten-free cartoonist (and caricaturist and blogger) in West Virginia?

Meet Danielle Corsetto! For the moment (at least) here's a section of her comic strip Girls With Slingshots—(over 18 recommended) and here's her gluten-free food rating blog Gluten-Free Foods That Don't Suck. Helluva blog name, Danielle!

Encore: "A Gluten-Free Christmas"

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CDFan

Here's a video (2:37) from Hilary/zeldafan about celiac disease and the estimable Celiac Disease Foundation (CDF).

Just one thing: It's pronounced SEE-lee-ack. Okay?

Chicago Tribune Exposes Poor Labeling

Sam Roe and Ted Gregory's article "Tribune investigation prompts stores to pull food items" (December 20, 2008) is the latest in the Chicago Tribune's look at labeling practices.

Says the article: "In one of the nation's largest examinations of undisclosed ingredients in food, the Tribune reviewed thousands of items at more than 60 locations, finding dozens of products obviously mislabeled. The newspaper also conducted 50 laboratory tests—more than the U.S. Department of Agriculture and the Food and Drug Administration combined over the last several years—to try to determine precise ingredients."

Can you believe how little testing the USDA and FDA do?

Many of the cases in the article have to do with milk, but there are some items of special interest to those on wheat-free or gluten-free diets. Perhaps the most important is the finding that "Oats are often tainted with wheat." This is well-known in wheat-free and gluten-free circles, but research supporting the claim only surfaces sporadically. And the article draws attention to one of the big flaws of current labeling regulations: The cross-contamination of wheat with oats is not something that must be disclosed, no matter how substantial it might be.

The Tribune tested six brands of oat cereal, and all had hidden gluten, most likely traces of wheat....

By law, labels need to disclose only ingredients in the product's formulation. Substances that might slip in through cross-contamination do not have to be declared, though more and more companies are putting such warnings on labels.

Tricia Thompson, author of "The Gluten-Free Nutrition Guide," said many people suffering from celiac disease, which can cause stomach cramps, know to avoid oats. But oat products, she said, should warn that they might contain wheat.

None of the six oatmeal products tested by the Tribune clearly warned consumers about the possibility of wheat, a major allergen.

But after the Tribune informed New York based-HappyFamily that its HappyBellies Oatmeal Cereal contained gluten, chief operating officer Jessica Rolph said she would relabel the product.

She added that consumers have been asking her company whether the cereal contains wheat. "Parents are definitely concerned about this," Rolph said.

The oats that tested highest for gluten in the Tribune examination were made by the Quaker Oats Co. Spokeswoman Candace Mueller said Quaker is aware that cross-contamination can occur in its oats, but "we are confident that our labels are accurate and our products are safe."

Thanks a lot, Quaker Oats.

Some good news for New Yorkers: "New York state authorities test many imports for mislabeled food, but few other regulators do." However, the article goes on to say that "With few checks on foreign labels, many imports pose a significant risk to U.S. children with allergies" and offers this cautionary note: "'If I had a food allergy, I wouldn't eat imported foods,' said Dan Rice, director of the New York state food laboratory."

Now I'm curious to see the results of all 50 lab tests.

ADDENDUM (12/21/08) From an email on the international celiac disease mailing list, it seems that the findings for oats were as follows.

920 ppm Quaker Old Fashioned Rolled Oats
190 ppm Jewel (Albertson's) Old Fashioned Oats
160 ppm McCann's Imported Steel Cut Irish Oatmeal
130 ppm HappyBellies Baby Oatmeal Cereal
79 ppm Whole Foods 365 Organic Rolled Oats
36 ppm Country Choice Irish Style Oats

None of them would qualify as gluten-free according to the current international standard of 20ppm maximum.

"Top 10 'Yuppie' Conditions"

Or, "An Article Diminished By Lousy Headlines"

Lauren Cox's ABC News story "Top 10 'Yuppie' Conditions" (December 17, 2008) has a lousy headline that encourages readers to think of the 10 conditions as (air-quote) "conditions" and a poor sub-headline that seems to confuse "Wheat Allergy or Celiac Disease or Gluten Allergy"—but beyond that, I guess it's all right.

Cox offers "10 of the most besmirched conditions patients wish would be taken more seriously," starting with a section on celiac disease even though that darn sub-headline also mentions allergies.

The article cites Elaine Monarch of the Celiac Disease Foundation (CDF) to the effect that "in 2004 the National Institutes of Health convened a consensus conference about celiac disease. The doctors estimated that 97 percent of people who have it have not been diagnosed, and that one out of 133 people likely had the condition." Okay. And it also quotes Dr. Alessio Fasano (who has a personal interest in research and development) as saying, "It deserves all the respect that we give to the other diseases that we spend so much time and money on." Also okay, despite the lack of disclaimer.

But besides better headlines, something that would actually have helped earn respect for celiac disease would have been a more coherent presentation that conveys the costs of celiac disease going underdiagnosed. Cox might even have noted that testing for celiac disease might help people with at least four of the other nine "Yuppie" conditions:

'Yuppie Flu' or Chronic Fatigue Syndrome*
Epstein-Barr
Social Phobia and Social Anxiety Disorder*
Tennis Elbow
Anxiety vs. Generalized Anxiety Disorder
Restless Leg Syndrome
Irritable Bowel Syndrome*
Seasonal Affective Disorder
Fibromyalgia*

Yes, celiac disease can be suspected in people with the four asterisked conditions. At least that's the point of view of the CDF, and, in the case of social phobia, doctors at Italy's Institute of Internal Medicine at the Catholic University of Rome.

Even More on Wellshire Farms, Whole Foods, and Labeling

Here are two more updates related to the revelations regarding substantial levels of gluten that have been found in Wellshire Farms products labeled as gluten-free.

* There's word that the Celiac Sprue Association (CSA) facilitated the testing of the products and found that Wellshire Farms seemed unconcerned about the alarming levels of gluten.

* Glutino president Steve Singer issued a statement saying in part that "the Tribune's report [November 21 and November 23, 2008] is a great step forward to making sure we all join this effort to protect Americans and our children living with food allergies."

Regarding the FDA in general:

* Mark Schlosberg and Elanor Starmer of Food & Water Watch declared "Food safety must be a first priority under the new administration. This is one area where individuals should not - and cannot - go it alone" in an Op-Ed piece in the San Francisco Chronicle.

* Representative Charles Dingel (D-Michigan) stated that the House Committee on Energy and Commerce "has found that FDA not only failed in its basic mission, but refused to admit its failures and take steps to protect Americans from unsafe food and drugs."

* The FDA attempted to stand up for itself.

Shameless Shirt Promotion

The Gluten-Free NYC Boutique continues to put the GF in GiFts with a wide range of products including a new set of sweats! Check 'em out here.

"GF Alphabet" and Other Special Designs by Debbie Glasserman Design

"Celiac Disease and Gluten Sensitivity"

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The William K. Warren Medical Research Center for Celiac Disease (WMRCCD) in San Diego recently held another educational meeting. Thanks to YouTube and UCTV you can virtually attend the meeting, which featured Dr. Martin Kagnoff, Dr. Kimberly Newton, and Dr. Susan Algert, a registered dietician. Like last year's installment, the video is long but informative—and highly recommended!

Kagnoff's talk, "Celiac Disease and Gluten Intolerance: How to Tell the Difference" surveys many basics, including a discussion of differences between oats and wheat, barley, and rye. I was surprised by his estimate that about 15%-20% of all cases of celiac disease have been diagnosed—I've heard the that diagnoses were much lower than that—but not surprised by his remark that "there is a huge amount of individuals walking the face of the United States who have celiac disease and don't know it." In his discussion of the frequency of celiac disease he says that mild cases are more common than severe cases, and notes that Japan is unusual in being nearly free of the condition due to genetic factors. He also devotes much time to issues related to testing, including the advisability of family screening and the problems posed by people who go gluten-free before they've been tested. He acknowledge the phenomenon of gluten intolerance or sensitivity but noted that very few studies have been done on the subject so far.

Newton's talk, "Growing Without Gluten: Update on Pediatric Celiac Disease," offers an overview of special issues regarding child patients. She lists possible non-gastronomical manifestations as enamel defects, mouth sores, short stature, delayed puberty, low bone density, arthritis, headaches, ADHD, depression, epilepsy, dermatitis herpetiformus, anemia, and inflammation of the liver. Something she mentions that I've heard elsewhere is that the tTg test (very popular with Kagnoff) may not be as reliable as anti-gliadin tests when used on children under two years of age.

Algert's "Tips on Eating Gluten-Free" includes advice to include many non-processed foods that can often be found along the perimeter of the store, as they are naturally gluten-free.

The Q&A session includes an interesting comment on advice for pregnant women who want to protect infants from celiac disease. In Newton's answer, she acknowledges the study that recommended introduction of gluten during months 4-6 of breastfeeding, but also noted forthcoming studies suggesting that waiting more than 12 months might be more advisable. Also during the Q&A period, Kagnoff discusses trials of treatments for refractory sprue and notes that dozens of peptide sequences can trigger the damage associated with celiac disease.

Breaking: Genetic Link with Type 1 Diabetes

I admit I don't quite understand the ramifications of this, but it seems worth noting that a British study published in the New England Journal of Medicine (NEJM) (December 10, 2008) found that juvenile diabetes and celiac disease had more in common genetically than the researchers had expected.

The study, "Shared and Distinct Genetic Variants in Type 1 Diabetes and Celiac Disease," concludes that "A genetic susceptibility to both type 1 diabetes and celiac disease shares common alleles. These data suggest that common biologic mechanisms, such as autoimmunity-related tissue damage and intolerance to dietary antigens, may be etiologic features of both diseases." This may help to address the question of why there is an "association" between celiac disease and Type 1 diabetes.

From Science Daily's coverage:

Professor David van Heel, from Barts and The London School of Medicine and Dentistry, said: "These findings suggest common mechanisms causing both coeliac and type 1 diabetes - we did not expect to see this very high degree of shared genetic risk factors."

Richard A. Insel, MD., Executive Vice President, Research, at JDRF, said: "These studies demonstrate that type 1 diabetes and celiac disease share far greater genetic overlap than had been appreciated, which helps explain the high prevalence of both diseases occurring simultaneously in an individual, and provide new avenues for understanding the cause and mechanisms of both diseases."

Note that a 2006 study published in Diabetes Care found that 12.3% of children with juvenile diabetes also had celiac disease, and recommended that all children with juvenile diabetes be tested for celiac disease.

CeliActivism: Health Care Reform

The Obama transition team welcomes input

During the second half of this month, Tom Daschle and the Obama transition team will welcome public input on its health care policy. Much of the attention at the forthcoming health care community discussions will probably be on how more people (especially children) can receive affordable health insurance, but this might be an ideal time to become more aggressive about finding ways to heighten awareness of celiac disease.

As you might recall, Barack Obama supports preventative medicine and judicious government spending. I would imagine that he is also looking to create "success stories" during the initial phase of his presidency.

I think that a celiac disease awareness policy would achieve those goals because

* More than 2,000,000 Americans of all ages (about one percent of the population) are estimated to have celiac disease that is undiagnosed or misdiagnosed even though they may be experiencing symptoms.

* Diagnosing and treating celiac disease in the undiagnosed children can help them develop normally, avoiding illnesses such as osteoporosis.

* Diagnosing and treating celiac disease in the undiagnosed general population can also prove beneficial, fending off osteoporosis as well as chronic fatigue, thyroid disease, and some forms of cancer, along with many other health issues.

* Decreasing the "time to diagnosis" from its current length of about 10 years can eliminate unnecessary tests and medical visits.

* Celiac disease can be initially screened through simple and relatively inexpensive blood tests.

* Celiac disease is treatable by diet, not medication or operations or procedures.

* The Obama administration does not need to initiate an awareness program from scratch. It can shape a policy that is informed by the examples of other countries, especially those in Europe.

* By raising awareness at a point in time when the vast majority of people with celiac disease are unidentified, the Obama administration can measurably accelerate the rate of diagnosis—in other words, it can point to results.

I hope that this type of message makes its way to people who can see the reasoning in it and take action to make it happen. If you agree, please think of how you can help to get the message across, whether it's through a community health care discussion, contact with sympathetic political figures such as Kemp Hannon, Nita Lowey, and Hillary Clinton, or contact with an advocacy group such as the American Celiac Disease Alliance (ACDA) and National Foundation for Celiac Awareness (NFCA).

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!



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Newsweek Web Exclusive: "A New Diet Villain"

Newsweek has posted a "gluten-free trend" online story, "A New Diet Villain" (December 3, 2008).

Unlike this week's WCBS-TV story, Karen Springen's article serves up a substantial helping of information on a gluten-free diet as the legitimate treatment for celiac disease, but the "trend" slant still downplays that angle along with the very important message that most people with celiac disease still need to be diagnosed.

DO YOU REMEMBER? Is gluten really a new diet villain, as the Newsweek headline claims? The New York Times ran the story "Jury is Still Out on Gluten, the Latest Dietary Villain" on May 8, 2007.

CeliaCalendar: Westchester Support Meetings

Author-chefs Annalise Roberts and Connie Sarros will be the guest speakers at Sunday's meeting of the Westchester Celiac Sprue Support Group (WCSSG). Billed as a "Holiday Food and Baking Spectacular," the meeting will also feature the following vendors:

Soul Dog Restaurant and Bakery
Three Dogs Gluten-Free Bakery
Miller's Gluten Free Bread Co.
Whole Foods Bakehouse
Katz Gluten Free

The meeting takes place at 2:00 pm on Sunday, December 7, 2008 at Phelps Memorial Hospital.

Also on the WCSSG schedule: a New Patient Meeting (with dinner) at the Whole Foods Market in White Plains at 7:30 pm on Thursday, January 22, 2009(!).

WCBS-TV Covers Gluten-Free Diet

Reporting on the gluten-free diet, Kirstin Cole of WCBS-TV notes that "1 out of every 100 Americans is estimated to be allergic [sic] to wheat gluten" but doesn't point out that the vast majority of them are still in need of diagnosis and treatment. That is an urgent health message that needs to be disseminated.

Instead, her story "Consumer Watch: Gluten-Free ... Fact Or Fiction?" (December 1, 2008) mainly asserts that masses of consumers—she doesn't offer estimates of how many—are fueling a gluten-free marketing boom even though they don't understand what a gluten-free diet can and can't do. Interesting and provocative, sure, but not "news" (as it's been reported elsewhere) and not especially helpful to the sick, undiagnosed millions estimated to be living in the United States.

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.