Thursday, January 31, 2008


Yikes! I just noticed that the blog Gluten-Free Girl was nominated for a Bloggie for Best Food Weblog—and the voting halts at 10 pm EST tonight, January 31, 2008.

So if you're gonna vote, hurry up and do it here!


A recent email exchange made me think of my chili-cooking history.

During college I used to make chili all the time, especially on weekend afternoons, using a James Beard recipe as a starting point and a stack of LPs or a martial arts movie as an accompaniment. The chili was an everything-but-the-kitchen-sink kind of concoction, involving ground beef and kidney beans and a very rich blend of herbs and spices and even sugary stuff like molasses.

After college, slicing the peppers caused a memorable mishap that I won't go into here.

Later—during my Brooklyn years—I found a recipe in The New York Times (July 28, 1985) that I couldn't resist trying. How could I resist, when veteran food writer Craig Claiborne introduced the recipe with the lede To be blunt about it, certain recipes are far more memorable than others?

More than twenty years later, I haven't forgotten the recipe though I only prepare it every now and then. It's a classic Texas-style chili, a spicy beef stew that is made without beans using cubed, not ground, beef. And the only tweak needed to make it gluten-free simply involves using gluten-free flour. Make sure you give yourself plenty of time, especially for trimming the meat right.
5 pounds lean chuck
1/2 cup olive oil
1/2 cup gluten-free flour
1/2 cup chili powder
2 teaspoons ground coriander
2 teaspoons ground cumin
2 teaspoons dried oregano
2 to 3 tablespoons finely minced garlic
5 cups fresh or canned chicken broth, approximately
Salt to taste, if desired
Freshly ground pepper to taste

1. Carefully trim off and discard all fat from the meat. Cut the meat into very small cubes.

2. Heat the oil in a heavy, deep kettle and add the beef cubes. Cook, stirring, until the meat loses its raw look.

3. Sift together the flour and chili powder and sprinkle this over the meat. Stir so that the pieces of beef are evenly coated.

4. Sprinkle with the coriander, cumin and oregano. Add the garlic and stir to blend. Add the broth, salt and pepper and bring to the boil. Let cook over low heat three to four hours or until the meat is exceptionally tender. Stir often from the bottom to prevent sticking and scorching. If necessary, add more broth. The dish should not be soupy.

Serves 8-12, with optional side dishes such as rice, Mexican beans and hot table sauce.
And here's a recipe tip that I've been meaning to share: The New York Times is full of great recipes that are either gluten-free or easily converted to gluten-free. At least that was the case several years ago.

And here's some martial arts action to go with that. (It's a trailer for the nightmarish Master of the Flying Guillotine.)

Source (1:42)

Tuesday, January 29, 2008


Should GF Diet Cost Be a Medical Expense?

Last year the study Economic burden of a gluten-free diet by Anne Roland Lee (right) and others at the Celiac Disease Center at Columbia University (CDCCU) found that "gluten-free foods have poor availability and are more expensive than their gluten-containing counterparts." According to the study, gluten-free bread and pasta cost twice as much.

So should the added cost of gluten-free food be covered by New York State health insurance policies? Empire Plan (UnitedHealth) has actually covered Mike Stickelmyer and perhaps a dozen other people for the additional cost of gf food...until this year, according to "Who picks up the gluten-free tab?"—an article by Cathleen Crowley in Albany's Times Union (January 28, 2008).

Crowley writes that New York's Insurance Department is investigating the change and quotes Barbara Jordan of The Celiac Disease Resource explaining that "Our food is our medication, basically." Jordan offers comparisons with policies in other countries, saying that Australia reimburses for food and Italy gives individuals with celiac disease extra days off work plus $2,000 annually for food costs.

But things are different in New York State, especially as of 2008. Crowley offers the following remarks:
"There's a very narrow category of diseases that require a special diet," said David Ernst of the state Department of Civil Services, which oversees the Empire Plan. "But celiac does not fall into that category."

"Celiac disease is viewed as more of an allergy, where if the individual avoids the gluten products, but they can still thrive on other types of food," said MVP [Health Care] spokesman Gary Hughes.

Many foods are naturally gluten-free, like plain fish, meat, chicken, rice, fruits and vegetables, said Kristin Marshall, spokeswoman for [the HMO] CDPHP.

"Because these members can also eat these foods, as can the celiac-free population, this condition does not qualify," Marshall said.
But I think part of the point is that those foods wouldn't necessarily be covered—only the difference in costs would be covered. This could be particularly helpful for families, where the costs of medically safe foods can be especially high.

Crowley also points out that people on gluten-free diets might have some recourse in other areas:
Celiac sufferers have some other financial options, including a tax deduction or paying food costs with pre-tax dollars. If their out-of-pocket medical expenses exceed 7.5 percent of their adjusted gross income ($3,750 for a $50,000 income), the gluten-free food costs can be deducted. Or, they can pay for gluten-free food through a flexible spending account.
My opinion? Health insurers should certainly help people on medical diets that are more expensive than average diets. Also, the government should calculate standard food deductions for those diets so that people who are thinking of asking for a deduction don't have to spend year after year collecting receipts and cooking up their own calculations. There's a kind of cruelty involved in requiring individuals to go through such a bookkeeping exercise when they might be spending their time doing something much more worthwhile—and healthy. Giving people the option of standard food deductions would, I think, be a very helpful practice.

There are other possible approaches to softening the blow of gluten-free food costs, such as government subsidies of food providers. I believe that practice exists abroad, too.

Sunday, January 27, 2008


Follow-Up Interview Scheduled for WNYC this Thursday


This post is long, but I hope it's worth putting on the Web. It's basically a critique of a Harper's item that consists largely of unsubstantiated criticisms of the Food Allergy and Anaphylaxis Network (FAAN), which to the best of my knowledge remains an excellent resource for people seeking reliable and scientifically supported information about food allergies. (I expect that much of this will be addressed on Thursday on WNYC's The Leonard Lopate Show, which has arranged a 12:40 pm interview with the well-regarded allergist Dr. Hugh Sampson (right) in response to the outcry over the Harper's piece and Lopate's subsequent interview with the piece's author, writer Meredith Broussard.)

I am not a member of FAAN, but I'm close to one person who is. She became part of the group after her child was diagnosed at a very early age with serious allergies to eggs, wheat, and dairy. FAAN, which was itself still in its infancy, helped this new mother learn how to manage the situation inside and outside her home by reading labels, being prepared to use an EpiPen in case of anaphylactic shock, and communicating her child's needs to others in their immediate and extended communities, where they lived and where they traveled.

Knowing of this very positive experience with FAAN, I've referred to the organization in this blog, mainly when writing about the current scientific understanding of spelt being prohibited on wheat-free and gluten-free diets. I've also considered FAAN to be a model organization when it comes to informing the general public about food allergies and facilitating communication among families, medical professionals, and others in the food allergy community. In a world where there is a lot of misunderstanding about allergies (and a lot of vagueness as to what does and does not qualify as a food allergy), I am sure that FAAN has helped countless people with food allergies to stay healthy and well-informed about their conditions.

That's why I was surprised to learn about the hostility towards FAAN in the January 2008 Harper's. The item in question, "Everyone's gone nuts: The exaggerated threat of food allergies," might look, at a glance, to be a six paragraph dissection of an FAAN pamphlet. But on closer inspection, it turns out to consist largely of a bunch of vague and insufficiently supported claims that could do more harm than good. I join with many people in finding the article to be seriously flawed, yet I've seen Harper's itself trumpeting the article on its homepage as "One of the reasons why HARPER'S is essential reading."

I think not.

In the first paragraph, Broussard writes the following:
Of little concern to most parents or educators only a generation ago, food allergies are now seen as a childhood epidemic. The American Academy of Pediatrics recently began recommending that peanuts be withheld until a child turns three; hundreds of food-allergy nonprofits and local parents groups have formed; and six states have passed laws requiring food-allergy safety measures in their schools, with similar legislation being considered in Congress. Children are even being recruited to help this supposed threat, as in this [FAAN] brochure, which enjoins young students to 'Be a Pal' and protect the lives of their classmates. But the rash of fatal food allergies is mostly myth, a cultural hysteria cooked up with a few key ingredients: fearful parents in an age of increased anxiety, sensationalist news coverage, and a coterie of well-placed advocates whose dubious science has fed the frenzy.
I won't take issue with Broussard's catalog of things being done on behalf of children with allergies. I'm open to AAP recommendations, the formation of parents groups and food-allergy nonprofits, legislation to protect students who have allergies, and brochures that encourage students to look out for the health of their classmates. Aren't you?

What I do question is Broussard's framing supposition—that food allergies are seen as an epidemic—and her corollary pronouncements regarding a mythical rash of fatal food allergies concocted by fearful parents and dubious science as well as sensationalist media coverage. I don't see any support for a claim that any reasonable party sees food allergies as an epidemic (as opposed to a significant health issue), and, as will be shown, I mainly attribute the brochures, legislation, advocacy groups, and AAP recommendations to concerned parents and mainstream, supportable, science—not to quackery or sensationalist news coverage.

Broussard continues by contending that "FAAN has successfully passed off as fact its message that food allergies have become more prevalent and dire." Yet the following statements do not support her contention; they merely make a mountain out of a statistical mole hill.

Broussard writes
Since 2005, more than 400 news stories have used FAAN's estimates that allergic reactions to food send 30,000 Americans to emergency rooms each year and that 150 to 200 ultimately die. The group derived these figures from a 1999 study of a rural Minnesota community, in which 133 people over a five-year period were determined to have suffered anaphylaxis—an allergic reaction that can mean everything from going into shock to developing an itchy mouth. Yet only nine people in the study ever required hospitalization for anaphylaxis from any cause. As for the death estimate, just one person died of anaphylactic shock, prompted not by food allergies but by exercise. The Centers for Disease Control and Prevention, in its most up-to-date figures, recorded only 12 deaths from food allergies in all of 2004. When asked about these statistical discrepancies, FAAN founder and CEO Anne Muñoz-Furlong said focusing on any number misses the point: "One child dying from food allergies is too many."
I've read that Broussard misused her CDC figures, but even if her numbers hold up they do not necessarily make a case that FAAN exaggerates the threat of food allergies to any significant extend. Let's compare FAAN's upper-range figure of 200 deaths to the figure of 12 offered by Broussard. In some situations the difference of 188 people might seem huge, but in this case it's a difference of 188 in a population of about 301,139,947. So FAAN says that, at worst, about 0.006641% of the population suffers fatalities, while the CDC says that 0.000398% of the population suffers fatalities. Neither the FAAN figure nor Broussard's CDC figure would seem to be what health policy makers might consider to be a high priority or what Broussard dubs "a statistical discrepancy."

Nevertheless, the saving of even one life in 301,139,947 can (and should) still be viewed as having a very high value. So it's understandable—and very honest—for the head of FAAN to take the position that "One child dying from food allergies is too many" in justifying the kind of education and preparation and policy-making that FAAN advocates.

Furthermore, Broussard makes what I call a "fatality fallacy," focusing on death as opposed to the overall impact of a health concern. Whether or not one considers any number of deaths prevented by the use of EpiPens and other procedures advocated by FAAN, it would still be misleading to evaluate food allergy policy only in terms of fatalities, when the actual experience of having a food allergy has more to do with preventing an array of alarming symptoms, non-lethal as well as lethal. This point of view is especially relevant to those of us who have celiac disease, as we rarely risk anaphylaxis but nevertheless suffer significant health problems when our medical diets are violated.

Next, Broussard vainly gainsays this factual FAAN statement regarding kids with food allergies: "Sometimes, if they eat even a tiny amount of the food they're allergic to, they can become very ill ... even die!"

Broussard uses somewhat debunked reports of a single incident—of a teen girl with a peanut allergy (and asthma) dying after kissing a boy who had eaten peanut butter—to support her contention that "there is simply no evidence that a food allergen can do serious harm if not ingested." But the truthful FAAN statement did not even claim that a food allergen could do serious harm if not ingested, and it did not refer to the "kiss of death" story.

Even Broussard's use of the "kiss of death" anecdote is problematic. As pediatric allergist Dr. Mike Pistiner told Sloane Miller (a.k.a. Allergic Girl, right) at
Allergens can be transferred through saliva, so the second-hand exposure threat is real but entirely avoidable. Rosemary Hallett and colleagues at the University of California Davis School of Medicine reviewed data collected on 379 subjects with self-reported immediate nut or seed allergy and found that 20 subjects (5.3%) reported that they experienced reactions from kissing. Most of these reactions were mild but 20% did experience respiratory symptoms (Hallett et al. N Engl J Med 2002; 346:1833-4). Studies in other countries showed that people with food allergies reported that they experienced allergic symptoms after having "close physical contact (for example, kissing) with someone who recently ate something they were hypersensitive to(Eriksson et al. Journal of Investigational Allergology and Clinical Immunology. 2003 13(3):149-154).

In 2006, Maloney and colleagues conducted a study measuring the amount of peanut protein in 1 ml of saliva at certain times after eating a peanut butter sandwich and following various interventions. The study showed that soon after eating peanut butter salivary levels of peanut protein were high enough in some to cause a reaction. Additionally, 13% of subjects had detectable peanut protein in the saliva after 1 hour. No subjects had detectable salivary peanut protein several hours later and after eating a peanut-free meal. This study supports the reports of patients experiencing symptoms after kissing and demonstrates that oral contact with saliva, such as from sharing utensils or cups, can contain significant amounts of allergen and should be avoided. Additionally this study gives some guidance as far as interventions that can reduce the risk of a reaction other than complete avoidance (Maloney et al. JACI. V 118, (3) 719-724).
Broussard writes triumphantly that asthma was the real cause of the teen girl's death, but she does not address the possibility that asthma can be part of an anaphylactic reaction. As Pistiner tells Miller:
Anaphylaxis can trigger asthma attacks that are notoriously difficult to treat. Wheezing, cough, chest tightness, and shortness of breath commonly occur during an asthma attack but are also life threatening symptoms seen during anaphylaxis (Wang. Clinical and Experimental Allergy, 37, 651-660). In some cases, respiratory symptoms can be the only manifestation (Moneret-Vautrin et al. Allergy. 2005: 60: 443-451). Anaphylaxis presenting in this way must be quickly treated with epinephrine. Prior to the advent of albuterol, epinephrine was the drug of choice for asthma exacerbation. When in doubt, use your epinephrine and call 911.
That, incidentally, is precisely the type of lifesaving information that FAAN offers.

In Broussard's attempt to criticize FAAN, she names it as one of an unspecified number of organizations that have helped changed the perception of food allergies to something resembling "a Newsweek cover (pictured) showing a pigtailed girl in a gas mask with a carton of milk in one hand and a peanut-butter sandwich in the other." Then she writes "But all we know for certain now is that more parents think their children suffer from food allergies." But Broussard doesn't substantiate that grand statement—and she doesn't seem to show any awareness that FAAN actually educates parents about what is and isn't a true food allergy.

Surveying incidents of "chumminess...within the world of food-allergy advocacy," Broussard writes that FAAN's sponsors include pharmaceutical companies with interests in devices such as the EpiPen, but fails to specify how this situation—typical in the health field—involves anything reprehensible.

She also notes that "Just about all the leading food allergists also have ties to FAAN or the Food Allergy Initiative (FAI)." I'd imagine that ties with leading food allergists would be a very good thing, but Broussard seems to think otherwise: "This intimacy helps explain why suspect statistical findings get published." But she doesn't offer such suspect findings. Instead, she writes "For instance, the coauthors of an oft-cited study on the dangers facing food-allergic children at restaurants were Anne Muñoz-Furlong's husband, who serves as a top FAAN executive, and a FAAN medical board member whose research is funded in part by FAI. The latter is also an editor at the leading allergy journal where the study appeared; the journal's editor-in-chief is head of FAI's medical board." That's not much of a "For instance," since it only shows the chumminess but offers no examples of "suspect statistical findings" being in the oft-cited study. I am sure that FAAN is not above criticism, but it really seems to be above Broussard's criticism, which lacks substantiation.

Broussard starts her conclusion by writing "There is no question that food allergies are real. Yet instead of creating the healthy, happy children shown here, exaggerating the threat may actually do as much harm as the allergies themselves." She then refers to anxiety and fear among food-allergic children, and adds that "Such psychological distress is exacerbated by parents, who report keeping their children away from birthday parties and sending them to school in 'No Nuts' T-shirts." Wrapping up, she alleges that, "Having been fed a steady diet of fear for more than two decades, we have become, it appears, what we eat."

There is some sense to Broussard's conclusion, but it too suffers from poor and unsupported rhetoric. I have no doubt that some children with food allergies suffer from disproportionate fear and anxiety and that the behavior of some parents feeds into it. However, she provides no persuasive argument for generically laying the blame on parents. Neither does she offer a persuasive argument that blame should be laid on FAAN and its alleged embrace of "dubious science," when FAAN actually relies on current allergy research and consistently encourages parents to consult with medical professionals.

Perhaps incidentally, Broussard does a somewhat better job with her opening allegation that sensationalist news coverage is a key component of misapprehensions about food allergies. Stories like the "kiss of death" and images like that of the Newsweek cover show how media can wallow in rarities and extremes instead of sober coverage.

But Broussard's own article typifies another kind of problematic media trend: generically portraying people on medical diets as misguided. Claiming to be against sensationalism and ungrounded fear, she chooses the wrong target in FAAN, which is grounded on medical research. Recognizing that there are indeed children with serious food allergies, she shrugs off the seriousness of those allergies and consequently heightens suspicions that people claiming food allergies are deluded or exaggerating, possibly making it harder for people with true food allergies to let go of their fears and anxieties and trust others with their health.

The outcry over Broussard's opinions swelled considerably when she followed up on the article with a one-on-one interview on WNYC's The Leonard Lopate Show. There have been more than 190 comments in response, most of them critical of Broussard and Lopate, who hit a low point when he thoughtlessly chuckled while imagining a food allergy challenge that involves the child trying the food in question while being watched for a severe reaction. (This type of testing can be very frightening.)

For a while after the radio interview, Broussard allowed comments to appear on her blog, but after the mostly critical comments showed up she appeared to consign them to the Memory Hole, disabling the comment function.

Friday, January 25, 2008


Following on the heels of the excellent video What You Need to Know about Celiac Disease and the Gluten-Free Diet, University of California Television (UCTV) now offers "Diabetes and the Gastrointestinal Tract," part of a book tie-in series called Taking Control of Your Diabetes.

The commercially supported video, featuring host Dr. Steven Edelman and guest Dr. James Wolosin, offers some basics about the gastrointestinal (GI) system and some GI conditions that are more likely to affect people who have diabetes.

Following a discussion about heartburn, acid reflux, and endoscopies, the conversation moves on to gastroparesis (around the 8:00 mark) and then celiac disease (around the 11:00 mark).

As the video states, people with Type 1 diabetes are more likely than the general population to have celiac disease; the same goes for people with first-degree relatives who have been diagnosed with celiac disease. (Even if you have a different type of diabetes, there's probably about a 1% chance of having undiagnosed celiac disease.)

Around the 14:40 mark there's a segment where a woman with diabetes raves about Whole Foods and talks about how her gastroparesis (delayed gastric emptying) went away after she adopted a gluten-free diet. (Heartburn also can go away after someone with celiac disease goes gluten-free.)

The coverage seems largely sound to me except for Dr. Wolosin's remarks differentiating people with celiac disease who show extreme sensitivity to gluten and people who do not show symptoms, saying that some people in the latter group can cheat a little bit on their diets every once in a while. Basically, almost all people with celiac disease who follow a gluten-free diet are likely to be accidentally contaminated every now and then (see my own confession, for instance), so it's probably not a great idea to compound the problem by giving patients a license to cheat intentionally, especially when damage to the body (such as bones and the intestines) can occur long before being noticed through symptoms. Cheating on the diet every now and then, like smoking every now and then, isn't likely to kill anyone, but it's still not the kind of thing I like to hear a doctor advocating.

As the video continues, the doctors also discuss ulcers, fatty liver, and colon cancer screening. The video ends with a summary.

Source (28:29)

Wednesday, January 23, 2008


Ten years ago, I was stuffing my mouth with a piece of cake that my mom had baked for me when I got a phone call from my internist.

What he told me changed my life. He informed me that I had been confirmed as positive for having celiac disease. He advised me that, to be healthier, I would have to adopt a gluten-free diet, giving up eating anything made with wheat, barley, rye, or oats.

So much for the cake.

The following months—and years—proved to be a time of adjustment and recovery after ten years of wondering why I was feeling so sick and so very, very tired. I taught myself how to be gluten-free using the resources I could find back then: Jax Peters Lowell’s book Against the Grain, materials from the Celiac Sprue Association (CSA), and visits to support group meetings in New York City as well as Westchester. I also subscribed to the international celiac disease mailing list and did research on what was then called "the information superhighway," where there was much less information than there is now.

Much of the information was consistent, but there were inconsistencies, too. Was vinegar gluten-free? How about buckwheat and millet? What about distilled liquor, like gin and vodka? I figured I would sort through those questions over time. (The answers turned out to be mostly yes, yes and yes, and yes.)

In the meantime, I followed the policy of When in doubt, don’t. I started off on a very limited diet and added foods as I confirmed that that were gluten-free, phoning and emailing companies to get that information for myself. I also did my best to contact restaurants and caterers in advance of a visit so I could heighten my chances of being served safe foods.

So how have I done over the past ten years? All right, I suppose.

I was probably best at avoiding any intentional departures from the diet. I used various strategies to pull that off: I remembered how bad I felt before I went gluten-free, I told myself I would feel better by remaining gluten-free, and I kept myself from getting so hungry (and far away from gluten-free food) that I'd make a bad choice out of desperation. Basically, I accepted the limits of my medical diet and remained open to discovering new and delicious foods within those limits.

Still, I have to admit that I've accidentally gone off the diet. Most of the time that involved tiny amounts of gluten. When I was pretty new to the diet, I had a spoonful or two of a soup before I realized barley was in it and I put it aside. On a later occasion, I had one bite of a fish before questioning a restaurant yet again and finally finding out that, yes, there was some flour in it.

In another case, I was probably eating miniscule amounts of gluten on a regular basis. When I ate sushi, I had no idea that the tiny flying fish roe called tobiko was made with soy sauce until I read about it on the mailing list and confirmed it myself. After that, there was no more tobiko in my life.

Then there were the mashed potatoes at an organic restaurant downtown. Someone at New York magazine had emphasized how accomodating the place was for special diets (writing something like "Gluten-free? No problem!") so I went there optimistically only to find that the restaurateurs actually had no idea what the diet required. But they seemed receptive, so I wrote up a detailed gluten-free food preparation guide that I think they laminated and posted in the kitchen. (This was long before the establishment of GFRAP, the Gluten-Free Restaurant Awareness Program.) I enjoyed eating there on a number of occasions—learning that quinoa goes well with chili—but then visited with some gluten-free friends, one of whom quickly found out that the mashed potatoes were being made with a rice milk or soy milk with some barley enzyme in it. That wasn't supposed to happen at that restaurant, where I had started to take gluten-free awareness for granted! Eventually the place shut down, removing the option anyway.

Probably the most gluten I ate was somewhere in a cross-contaminated loaf of millet bread from Florida's DeLand bakery. Lots of people had said it was delicious but, holding true to the doubt dictum, I avoided the bread for years because of allegations that it contained gluten. However, eventually I felt healed enough to give it a try—two weeks before a doctor appointment when I would get my blood tested. I don't think I can always tell when I've eaten gluten, but after two weeks of this bread I did experience fatigue, grouchiness, and loose bowel movements. Then my blood test turned out to be positive for the first and only time since it had normalized during my first year on the diet. Later I heard that Disney (or somebody) had DeLand bread tested for gluten and found it to be contaminated. The bakery subsequently changed the marketing of its products so that fewer gluten-free people would be deceived, but that only happened after years and years of bad practices (and ill and confused consumers). Bad, bad DeLand!

Other than that, two other instances come to mind. Years ago a girlfriend and I made a detour on the way home from a vacation so we could try out a GFRAP restaurant where I ordered cake for dessert. I couldn't believe how "normal" the cake was, so I repeatedly asked whether it was really gluten-free, only to be assured that it was. Instead of eating all of it, I took it back home, ate some more, and finally checked with the restaurant one more time. I finally got through to the owner, who regretfully told me that I had been served the wrong dessert. (That restaurant is no longer on the GFRAP roster.)

Most recently, I went on a road trip to try out another GFRAP restaurant, Jules Thin Crust Pizza (JTCP), with two other gluten-free people. On our way back, two of us started to feel funny in the ol' abdominal zone. I followed up over the phone and found out that part of our order had not been gluten-free. As is my practice in this kind of situation, I suggested some ways the restaurant could avoid that kind of mishap and contacted GFRAP to let it know my feelings. I'm hopeful that Jules Thin Crust Pizza will do better in the future. Just remember to look for this stamp when you order gluten-free pizza there.

And I think that's about it for my dietary successes and screw-ups over the past ten years.

Of course, I didn't do it alone. Most or all of my experiences have been dependent on those around me, too—from acquaintances and loved ones to restaurant workers and caterers to people who create programs and do research and make policies that make it easier to identify and obtain gluten-free foods. I'm grateful to them all, and I'm also grateful to my internist and my current roster of specialists for helping me stay on my path to improved health.

Photo: David Marc Fischer


Many samples of tuna sushi purchased in New York City in October 2007 contained dangerous levels of mercury, according to an investigative report by Marian Burros in today's New York Times. The levels, caused mainly by industrial pollution, were especially alarming for tuna sold in high-end restaurants, such as Blue Ribbon Sushi, which are thought to make tuna sushi from larger (older) bluefin tuna rather than smaller albacore and yellowfin tuna, which tend to contain less mercury.

Some article excerpts:
Recent laboratory tests found so much mercury in tuna sushi from 20 Manhattan stores and restaurants that at most of them, a regular diet of six pieces a week would exceed the levels considered acceptable by the Environmental Protection Agency.

Sushi from 5 of the 20 places had mercury levels so high that the Food and Drug Administration could take legal action to remove the fish from the market.

"No one should eat a meal of tuna with mercury levels like those found in the restaurant samples more than about once every three weeks," said Dr. Michael Gochfeld, professor of environmental and occupational medicine at the Robert Wood Johnson Medical School in Piscataway, N.J.

The owner of a restaurant whose tuna sushi had particularly high mercury concentrations said he was shocked by the findings. "I’m startled by this," said the owner, Drew Nieporent, a managing partner of Nobu Next Door. "Anything that might endanger any customer of ours, we’d be inclined to take off the menu immediately and get to the bottom of it."

Although the samples were gathered in New York City, experts believe similar results would be observed elsewhere.

In 2004 the Food and Drug Administration joined with the Environmental Protection Agency to warn women who might become pregnant and children to limit their consumption of certain varieties of canned tuna because the mercury it contained might damage the developing nervous system. Fresh tuna was not included in the advisory. Most of the tuna sushi in the Times samples contained far more mercury than is typically found in canned tuna.

Over the past several years, studies have suggested that mercury may also cause health problems for adults, including an increased risk of cardiovascular disease and neurological symptoms.

No government agency regularly tests seafood for mercury.

Tuna samples from the Manhattan restaurants Nobu Next Door, Sushi Seki, Sushi of Gari and Blue Ribbon Sushi and the food store Gourmet Garage all had mercury above one part per million, the "action level" at which the F.D.A. can take food off the market. (The F.D.A. has rarely, if ever, taken any tuna off the market.) The highest mercury concentration, 1.4 parts per million, was found in tuna from Blue Ribbon Sushi. The lowest, 0.10, was bought at Fairway.

At Blue Ribbon Sushi, Eric Bromberg, an owner, said he was aware that bluefin tuna had higher mercury concentrations. For that reason, Mr. Bromberg said, the restaurant typically told parents with small children not to let them eat "more than one or two pieces."

Six pieces of sushi from most of the restaurants and stores would contain more than 49 micrograms of mercury. That is the amount the Environmental Protection Agency deems acceptable for weekly consumption over a period of several months by an adult of average weight, which the agency defines as 154 pounds.

According to a 2007 survey by the New York City Department of Health and Mental Hygiene, the average level of mercury in New Yorkers’ blood is three times higher than the national average. The report found especially high levels among Asian New Yorkers, especially foreign-born Chinese, and people with high incomes. The report noted that Asians tend to eat more seafood, and it speculated that wealthier people favored fish, like swordfish and bluefin tuna, that happen to have higher mercury levels.

The city has warned women who are pregnant or breast-feeding and children not to eat fresh tuna, Chilean sea bass, swordfish, shark, grouper and other kinds of fish it describes as "too high in mercury." (Cooking fish has no effect on the mercury level.)
An interesting aspect of the New York Times report is that it is accompanied by a chart that analyzes the mercury content in terms of parts per million (ppm) as well as serving sizes. Examining the chart, you can see that an ordinary difference in serving size can make a restaurant portion with a relatively low ppm more dangerous than a restaurant portion with a relatively high ppm. This might (or might not) point to a weakness in FDA labeling proposals that seem to define gluten levels only by ppm, not by serving size.

The news about high levels of mercury in sushi tuna comes at a time when Michael Bloomberg's city government seems to be focused largely on implementing strict restaurant inspections and getting fast food restaurants to disclose the calorie content of their foods. This is part of a trend: Other states and cities are considering legislating the disclosure of nutritional information on menus, too.

It seems to me that inspections of food quality at restaurants should include measures such as the sampling of fish for mercury levels, with follow-up actions consistent with health warnings from parties such as the FDA and the city's Department of Health and Mental Hygiene. Similar practices might also be warranted regarding issues such as the gluten or allergen content of foods. As I've suggested previously, something is lacking when most of an estimated 1% of the population might be "poisoned" by gluten in food but doesn't realize it, while governments have not established food preparer standards for good practices regarding gluten and allergens.

Here is a video about mercury contamination from the environmental group Oceana. Note that symptoms of mercury poisoning are similar to non-intestinal symptoms experienced by many people who have celiac disease. Medical testing is a good way to investigate the cause of symptoms in any particular case.

Source (7:14)

Monday, January 21, 2008


I don't understand much French, but as far as I can tell it looks like a groovy rock/ska/punk group called Marcel et son Orchestre performed at a Lille concert hall in a December 20, 2007 benefit concert called Symphonie san gluten/Gluten-Free Symphony on behalf of France's Groupe d'Etude et de Recherche sur la Maladie Coeliaque (GERMC)/Group for the Study and Research of Celiac Disease in coordination with l'Association Française Des Intolérants Au Gluten (AFDIAG)/The French Association of the Gluten Intolerant.

Here's a glimpse of the concert. In this video, the group gets around to performing the song "La Famille Ingall's" with the help of an orchestra and a chorus.

Source (6:44)

And here's more Marcel—a video in which the group appears to be traveling inside a giant loaf of bread (which I hope is gluten-free). Good stuff!

Source (3:35)

Saturday, January 19, 2008


Suddenly there are at least three very different fundraising events coming up for the Celiac Disease Center at Columbia University (CDCCU). Here they are, in chronological order.

Monday, February 4, 2008 (6:30–9:30 pm)

Cooking by the Book
13 Worth Street, New York, NY
Culinary team building, dinner, drinks
Registration: $220
RSVP by Monday, January 28 to Cynthia Beckman (cb2280 at
Mail a check payable to Trustees of Columbia University to
Cynthia Beckman
Director of Development/Administrator
Celiac Disease Center at Columbia University
Harkness Pavilion
180 Fort Washington Avenue
Suite 934
New York, NY 10032

Wednesday, March 5, 2008 (5:45 pm/curtain 7:00 pm)
Paul Taylor Dance Company with Foods by George
New York City Center
West 55th Street between 6th and 7th Avenues, New York, NY
Reception, silent auction, dance performance, dessert
$35/65/120 tickets ordered by mentioning code CDC at box office or through CityTix at 212-581-1212
Sponsored by The CeliacChicks

Sunday, March 9, 2008 (1:00-4:00 pm)
Bowling Bash
AMF Syosset Lanes
111 Eileen Way, Syosset, NY
Unlimited bowling, silent auction, refreshments
Adults and Teens $40, Children (12 and under) $25
Registration requested; for more info, contact Randi Albertelli at rsquared31 at

Thursday, January 17, 2008


As briefly noted in November, Green's beer is available at Risotteria in two varieties: The mellow, dark amber Discovery (a GFNYC favorite) as well as the blonde and bitter-when-warm Quest Tripel Ale. Both come in oversized bottles currently priced at $10 (as opposed to $6 for Bard's Tale, New Grist, and Redbridge).

Green's also makes Endeavour Dubbel Ale, a dark beer that is as close to a gluten-free Guinness stout that I've sampled so far. It's like a stout lite, if you can handle the concept.

These beers are important (and worth trying) because they represent a flavor revolution in gluten-free beers available in the United States. I don't have anything against beers that emulate popular American brews such as Budweiser and Coors, but I also value the varied flavors of Green's beers.

Besides Risotteria (where I recently sampled a gluten-free jelly roll), look for Green's beers at the following NYC locations. (Call in advance to make sure they're available.)
American Beer Distributing Co.
256 Court St.

Apple Plus
329 Church St.

191 5th Ave.

Eagle Provisions
638 5th Ave.

Fairway Red Hook
480 Van Brunt St.

Spuyten Duyvil Grocery

218 Bedford Ave.

Croxley Ale House
28 Avenue B

The Ginger Man (where I just had a $9.50 Endeavour)
11 East 36th St.

New Beer Distributors
167 Chrystie St.

The Room
142 Sullivan St.

Heliopolis Market

32-16 Broadway
Queens (Astoria)

35-02 35th St.
Queens (Astoria)
Green's beers are distributed by Merchant du Vin.

Tuesday, January 15, 2008


In time for its very first Valentine's Day, the Gluten-Free NYC Boutique is happy to introduce a very huggable gluten-free bear!

For different sorts of gluten-free fun, here's the new GFNYC Boutique boxer shorts...

...and the new, All-American, GFNYC Boutique thong!

Shop the Gluten-Free NYC Boutique. Because nothing says "sexy" quite like gluten-free white undies!

Sunday, January 13, 2008


At least two Whole Foods events are coming up in the area shortly. One is in White Plains; the other is in downtown Manhattan.

On Wednesday, January 16, 2008, the Whole Foods Market in White Plains (110 Bloomingdale Road) will donate 5% of the day's net proceeds to the Westchester Celiac Sprue Support Group (WCSSG). So if you shop there, part of the money you spend will support one of the best support groups around! From 3:00 to 7:00 pm, you can also enjoy gluten-free vendor sampling, kids' activities, and a book signing from WCSSG board member Rory Jones, co-author of Celiac Disease: A Hidden Epidemic, which is soon to be out in paperback. Other WCSSG board members will also be present.

And on Friday, January 18, 2008, from 6:30 to 9:00 pm, the Whole Foods Culinary Center on The Bowery will host a gluten-free dessert class featuring recipes for Fruit Crisp, Anti-Bread Pudding, and Bourbon Chocolate Pecan Pie. The cost: $55. You can make reservations here.

Friday, January 11, 2008


Vincent Gruppuso, founder of the Long Island-based dessert company Kozy Shack Enterprises, died on December 29, 2007 from complications of diabetes, reports The New York Times.

Kozy Shack is notable for being one of the first mainstream food companies to market its high-quality desserts—most notably its signature rice pudding (pictured)—with a "Gluten Free" label. All of its flans and puddings are gluten-free and Kosher; the Kozy Shack line also includes No Sugar Added products.

If it's safe for you to eat Kozy Shack desserts, why not treat yourself to one in honor of Vincent Gruppuso?


I recently read some emails on the international celiac listserv that helped me to understand why there seem to be at least two celiac disease awareness months.

Let's start with a message from Beth Hillson, president of the American Celiac Disease Alliance (ACDA), about May being Celiac Disease Awareness Month:
In response to the question about May as Celiac Awareness month -- the overwhelming majority of celiac organizations and all of the Celiac Research Centers in the United States recognize May as National Celiac Disease Awareness Month.

Internationally, the Association of European Coeliac Societies (AECS) recognizes Celiac Disease in May and celiac events are held throughout the world to raise awareness.
(The association represents 26 countries of the EU - including Andorra, Austria, Belgium, Croatia, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Netherlands, Norway, Portugal, Romania, Russia, Slovakia, Slovenia, Spain, Sweden, Switzerland, and UK)

The May observance in the United States was chosen to coincide with our international colleagues. It was also done in recognition of the many other medical conditions related to celiac disease that are observed in May. Celiac disease is still relatively unknown and being able to draw connections between these medical conditions and celiac disease helps to elevate its importance and enhance awareness. Some of the other May health observances include:

Digestive Diseases Awareness Month
Digestive Diseases Week
Food Allergy Awareness Month
Food Allergy Week
National Arthritis Month
National Osteoporosis Awareness and Prevention Month
Women's Health Week and Women's Health Check-up day

Organizations, Research Centers, and Companies supporting the May observance:

Celiac Disease Foundation
Gluten Intolerance Group
Westchester Celiac Sprue Support Group
American Celiac Disease Alliance
National Foundation for Celiac Awareness
University of Maryland Center for Celiac Research
University of Chicago Celiac Disease Program
Celiac Disease Center at Columbia University
Wm. K. Warren Celiac Disease Research Center UC San Diego
Bob & Ruth's Gluten-Free Dining & Travel Club
Ener-G Foods, Inc.
Enjoy Life BrandsT
Foods by George
Gluten-Free Living
GlutenFree PassportR
Kimball Genetics
Living Without
Pamela's Products
Prometheus Laboratories, Inc.
Savory Palate, Inc.

Its worth noting that October is Breast Cancer Awareness Month. It is extremely difficult for any condition, to compete for attention at that time. And since recognition and attention are key to raising awareness, May is a better fit.

Congresswoman Nita Lowey (NY) introduced legislation in 2004, 2006, and again, this year (H.Con.Res. 70) which emphasizes the designation of May as National Celiac Disease Awareness Month. That legislation now has 29 cosponsors and more are expected once Congress returns later this month.

I hope this helps clarify why May is supported and endorsed as National Celiac Disease Awareness Month.
Before considering why others consider October to be Celiac Disease Awareness Month, let's pause to recognize Celiac Disease Awareness Day—September 13, the birthday of Samuel Gee, who is widely considered to be the "discoverer" of celiac disease.

As for October being Celiac Disease Awareness Month, that is basically the province of the Celiac Sprue Association (CSA) and the Canadian Celiac Association (CCA)—which is, nevertheless, having its national conference in May!

Of course, here at GFNYC, every day is Celiac Disease Awareness Day—and every month is Celiac Disease Awareness Month!

Wednesday, January 09, 2008


Celiac disease sometimes comes up in the media in surprising, even shocking, ways. A recent example has to do with the animosity between sports trainer Brian McNamee and pitcher Roger Clemens, who has been implicated by McNamee as a steroid user.

As part of a campaign to defend himself and attack McNamee, Clemens—a notoriously aggressive pitcher—recently played a taped phone conversation between himself and McNamee in front of the media. I'm having trouble figuring out how this stunt could actually help Clemens, but maybe I'm distracted by the fact that the conversation includes references to the ill health of McNamee's son, who has apparently been diagnosed with celiac disease as well as diabetes. Regardless of the fact that New York is a state where medical confidentiality is supposed to be extremely protected, is it proper for Clemens to "out" McNamee's child in this manner? ESPN writer Shaun Assael doesn't seem to think so.

Also, in playing the tape, Fox Sports (and maybe other media outlets) saw fit to bleep some of the words, but went ahead with those related to the health disclosure. Is that right? I feel bad about posting the video here (the second part is here), but hopefully I'm not compounding any damage by bringing up the issue at this point.

Source (8:46)

Tuesday, January 08, 2008


Adults diagnosed with untreated celiac disease should have their bone density checked because many—men included—have low bone density.
After adopting a gluten-free diet, such people often show dramatic improvement without taking osteoporosis medication such as bisphosphonates. However, physicians may still consider prescribing bisphosphonates to improve bone density.

Although many people appear to use bisphosphonates safely, concerns about the medication have come up periodically. Necrosis has received some attention, though I have been told that it is very rare. Jane Brody at The New York Times (July 5, 2005) reported on a possibile association of slow-healing non-traumatic stress fractures with the use of bisphosphonates for more than five years.

And now the FDA has issued an alert about severe bone, joint, and/or muscle pain while taking a bisphophonate:
FDA is highlighting the possibility of severe and sometimes incapacitating bone, joint, and/or muscle (musculoskeletal) pain in patients taking bisphosphonates. Although severe musculoskeletal pain is included in the prescribing information for all bisphosphonates, the association between bisphosphonates and severe musculoskeletal pain may be overlooked by healthcare professionals, delaying diagnosis, prolonging pain and/or impairment, and necessitating the use of analgesics.

The severe musculoskeletal pain may occur within days, months, or years after starting a bisphosphonate. Some patients have reported complete relief of symptoms after discontinuing the bisphosphonate, whereas others have reported slow or incomplete resolution. The risk factors for and incidence of severe musculoskeletal pain associated with bisphosphonates are unknown.

This severe musculoskeletal pain is in contrast to the acute phase response characterized by fever, chills, bone pain, myalgias, and arthralgias that sometimes accompanies initial administration of intravenous bisphosphonates and may occur with initial exposure to once-weekly or once-monthly doses of oral bisphosphonates. The symptoms related to the acute phase response tend to resolve within several days with continued drug use.

Healthcare professionals should consider whether bisphosphonate use might be responsible for severe musculoskeletal pain in patients who present with these symptoms and consider temporary or permanent discontinuation of the drug.
Bisphosphonates are marketed as Actonel, Actonel+Ca, Aredia, Boniva, Didronel, Fosamax, Fosamax+D, Reclast, Skelid, and Zometa.

Sunday, January 06, 2008


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.

Friday, January 04, 2008


Hey—it only took me two months to follow-up on one of my own posts and pay the verē chocolate factory a visit!

First of all, I want to clarify something: If you visit the factory, don't expect to see candies being made. But do expect to inhale the enticing aroma of chocolate as you exit the elevator and see a simple wall display of verē products.

Once you enter the verē production area, there's a table with free samples of yummy and unusual chocolates that are both gluten-free and suitable for diabetics!

On a display rack to the right, by the entrance to the Forbidden Zone where the candies are made, were bags of a new product, chocolate-covered clusters of popcorn and pumpkin seeds with a dash of pepper. Tasty Pumpkorn!

Verē's Factory Fridays, which may expand to other times, provide a great opportunity to sample its unusual and attractively presented candies, which include flavorful "brownies" and ultra-buttery truffles as well as clusters, to name some of the company's other temptations. For diabetics and/or people on gluten-free diets, it's a special pleasure to be able to enjoy a free tasting in a worry-free atmosphere.

Keep verē in mind for Valentine's Day and other special occasions! The factory is at 12 West 27th Street (between 6th Avenue and Broadway), 6th Floor.

Photos: David Marc Fischer

Wednesday, January 02, 2008


In recent weeks I spotted Alberto's Sicilian Cookies on sale at Long Island's Dr. B. Well Naturally and managed to taste all four varieties, from Alberto's original powdered Almond Cookies (pictured) to the Chocolate Covered Almond Cookies, White Chocolate Covered Pistachio Cookies and the White Chocolate Covered Espresso Almond Cookies.

Yes, if you're nuts about nuts (as I am), then there's a good chance you'll be nuts (as I am) over these nutty gluten-free cookies, which have a dense, chewy consistency and a mild marzipan-like flavor.

So far I haven't noticed them in NYC, but I do note that they can be ordered online—at least from October through March.