A Big Apple Guide for People with Celiac Sprue and Others on a Gluten-Free Diet
Besides being stubbornly independent, GFNYC tries to be accurate and up-to-date, but feels obligated to offer this disclaimer: None of this information is medical advice. Also, GFNYC cannot take responsibility for errors or misinformation that might appear here. GFNYC encourages all readers to confirm information to their own satisfaction.
Just thought I'd offer a round-up of various items related to our neighbors north of the border....
At this week's Fancy Food Show in New York City, I enjoyed the gluten-free (and egg-free) butter crunch (sample at right) from Toronto's CocoMira.
Quebec microbrewery Les bières de la Nouvelle-France now advertises two gluten-free beers: Messagère pale ale and the new Messagère Red Ale. Judging from the website, it looks like the brewers expect distribution in the United States soon!
Thanks to Saskatchewan dietitian Shelley Case, I'd like to draw your attention to Health Canada's Celiac Disease: The Gluten Connection, a clear, concise, and recently produced overview of celiac disease. (For the inevitable United States comparison, click here to see materials produced as part of the Celiac Disease Awareness Campaign of the National Digestive Diseases Information Clearinghouse of the National Institutes of Health (NIH).)
This Seattle video about pediatric celiac disease covers a lot of potential symptoms including anemia, rashes, diarrhea, joint inflammation, malnourishment, moodiness, anxiety, depression, growth delays, and some forms of cancer.
It also includes something I'm not used to seeing or hearing about: A 13-year-old getting a bone density test. What I usually hear is that bone density tests are not recommended in many pediatric cases, largely due to a lack of corroborative data.
Anyway, it seems that many doctors postpone bone density tests until patients are old, even (in the case of women) post-menopausal. It still seems to make sense to me to do testing sooner because it's often easier to stop or reverse the bone-thinning process at an earlier age. I'd like to hear more about baseline tests for people in their 20s and 30s (if not sooner, depending on how reliable and informative the tests might be) with perhaps 10-year follow-ups in an attempt to nip any problems in the bud, when diet and exercise might still help the patient improve and avoid treatment with drugs. The tests might also help doctors find many undiagnosed cases of celiac disease.
Painter notes that "Marketers estimate that 15% to 25% of consumers want gluten-free foods — though doctors estimate just 1% have celiac disease, the best-defined and most severe form of gluten intolerance, says Cynthia Kupper, executive director of the non-profit Gluten Intolerance Group of North America (GIG)." Painter also quotes American Dietetic Association spokeswoman Dee Sandquist as saying that there is "a fad aspect" to the diet among college students.
Painter cites Dr. Alessio Fasano as noting that 110,000 Americans have been diagnosed with celiac disease, up from 40,000 in 2003—but that about 2,890,000 remain undiagnosed. He notes that, besides those people, there are those who may react poorly to gluten even though they do not test positive for celiac disease. Sandquist surmises that others might feel better on a gluten-free diet because they may be eating more fruits and vegetables and less fast food and processed food.
If, as the article suggests, the growing "popularity" of gluten-free diets might offer more and better dining options, just imagine how much better it would be if the millions of people with undiagnosed celiac disease received correct diagnoses. Their health would improve while their numbers would enhance a fad-proof gluten-free market.
A sidebar identifies the following trouble signs that one should discuss with a physician:
• Frequent diarrhea • Frequent constipation • Frequent bloating • Unintended weight loss • Failure to grow (in children) • Anemia • Unexplained fatigue • Frequent headaches • Bone or joint pain • Itchy skin lesions • Tooth enamel defects • Mouth ulcers
The guidelines and diagnostic algorithms described in the announcement can be extremely useful in helping doctors figure out whether patients have celiac disease. There is even a set of recommendations for diagnosing patients who are already on gluten-free diets. It's still advisable for patients to be on gluten-inclusive diets for a significant stretch leading up to the diagnostic period ("Serology may be falsely negative in patients who have already reduced the gluten in their diet," says the announcement), but it's good to have access to a backup strategy clearly outlined by Mayo Clinic (which does market its own tests).
The announcement states, "There are no typical celiac disease-specific symptoms; most people with the disease have general complaints such as intermittent diarrhea, abdominal pain, and bloating." But it does list numerous "signs and symptoms of celiac disease."
Failure to thrive in infants Anemia Thyroid disorders Chronic fatigue Unexplained short stature Depression Irritability Seizures/neuropathy Recurrent fetal loss/infertility Delayed menarche Early menopause Osteoporosis, osteopenia Oral sores Tooth discoloration or loss of enamel Vitamin deficiencies Myocarditis Hyposplenism Pulmonary hemosiderosis
Also of note:
"Up to 10% of untreated celiac disease patients may also have negative serology. When serology is uninformative or indeterminate, and there is substantial clinical doubt remaining, HLA [genetic] typing should be performed to help discriminate those patients for whom a diagnosis of celiac disease can be excluded."
"Mayo Medical Laboratories no longer recommends reticulin testing for the diagnosis of celiac disease. The sensitivity and specificity of this test for celiac disease are inferior to the other tests previously mentioned."
This Parents TV segment includes an interview with Dr. Peter Green and a look at a Celiac Disease Center at Columbia University (CDCCU) cooking event at Cooking by the Book. Dr. Green says that it's important for newly diagnosed children to have an accurate idea of what a gluten-free diet is, and he also notes that children who are diagnosed early tend to be the best when it comes to staying on the diet. The video also includes comments from CDCCU nutritionist Anne Roland Lee.
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.
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's a YouTube video of Heidi Collins's substantial October 15, 2007 CNN Newsroom overview of celiac disease featuring Georgetown University gastroenterologist Dr. Aline Charabaty, who talks about the range of symptoms (which can include diarrhea, bloating, fatigue, anemia, depression, malnutrition, infertility, osteoporosis, joint pains, abdominal pain, neurological disorders, non-Hodgkin lymphoma, gastrointestinal malignancies, and weight and growth problems), the fact that celiac disease can manifest at any age, difficulties in raising research money, and the presence of gluten in many items including some pharmaceuticals.
Written by Anne Underwood, the piece begins with the story of Alice Bast, founder of the National Foundation for Celiac Awareness (NFCA). She suffered fatigue, migraines, depression, weight loss, hair loss, dental problems, GI symptoms, and tingling in the extremities as well as a traumatic failed pregnancy before she received her accurate celiac diagnosis—after seeing nearly two dozen doctors.
The article refers to Dr. Alessio Fasano's 2003 estimate that about 3 million Americans (1 in 133) have celiac sprue, but notes that the condition "remains vastly underdiagnosed." It mentions that symptoms (such as anemia, osteoporosis and failure to thrive in young children) can go well beyond the digestive tract, and offers an explanation as to why Dr. Peter Green (pictured) would say, "Name the organ, and celiac disease can affect it." Underwood writes that, in response to gluten, the immune system in an affected individual "generates antibodies to an enzyme called tissue transglutaminase. This enzyme is an innocent bystander that acts on gluten in the lining of the intestine. But because the enzyme is also found throughout the body—in the skin, heart, thyroid, bones and nervous system—antibodies that attack it can direct their fire at any of these other organs, too."
Underwood emphasizes that the longer someone with celiac sprue remains untreated, the more problems are likely to develop, and also makes the point that, among autoimmune conditions, celiac sprue is one of the easiest to treat, as it involves maintaining a diet instead of undergoing surgery or treatments. (See this post for information about people who were diagnosed with celiac sprue and then mistakenly told they could safely eat gluten.)
The article also asserts that maintaining the diet is easier than ever due to the creation of new products and the rising number of restaurants offering special, gluten-free menus. Mentioned are the Outback and Carrabba's chains, with Risotteria scoring a photograph and Bistango depicted as the site of a lunch between Heidi Collins (pictured) and Celiac Chick Kelly Courson. Each restaurant is part of the nationwide Gluten-Free Restaurant Awareness Program (GFRAP), which, I'm sorry to note, is not recognized in the article.
The article ends with a mention of honeymooning blogger Shauna James Ahern and a description of her forthcoming book Gluten-Free Girl as "a delightful memoir of learning to eat superbly while remaining gluten-free." According to Amazon, the book will be out on October 5, 2007.
ADDENDUM People seeking more information about celiac sprue may find the following links useful:
Here's video of Wednesday morning's Today in New York segment in which anchor Rob Morrison talks about celiac disease with medical contributor Dr. Lisa Thebner.
As you can see in the video (4:15 not counting the lead-in advertisement), Morrison knows someone who got a positive diagnosis and experienced improved health after adopting a gluten-free diet. Morrison and Thebner discuss how celiac disease is more common than previously thought and go over some of the classic symptoms: cramps, weight loss, poor weight gain in children, distension, cramps, and stool changes (including diarrhea, foul smell, gray coloration) as well as anemia, skin rash, mood changes, nerve damage (tingling), and joint and muscle pain. Thebner mentions that first-degree relatives of people diagnosed with CD should also get tested.
The report offers a detailed overview of people with celiac disease in north North America and concludes with remarks that seem applicable to people with celiac disease everywhere:
The results of this study emphasize the need for early diagnosis, treatment and follow-up of celiac disease. Despite the availability of excellent antibody screening tests, delays in diagnosis of celiac disease remain a key issue. This needs to be addressed given the current prevalence estimates of 1 in 133 having celiac disease in North America. Better awareness among family physicians, dietitians and other health professionals about the variety of clinical presentations, especially anemia, osteoporosis, reproductive problems and autoimmune disorders is essential. Utilization of antibody testing for screening at-risk groups, especially first-degree relatives, would be potential strategies to reduce delays in diagnosis.
Having to follow a strict gluten-free diet for life has a major impact on the quality of life of individuals with celiac disease. Given the difficulty in determining the gluten-free nature of foods, there is a need for food manufacturers to ensure complete and accurate labeling of gluten sources and for food service establishments to provide accurate information on the gluten content of food served. Comprehensive education of newly diagnosed patients, by dietitians and physicians with expertise with expertise in celiac disease, will help optimize compliance, improve quality of life and reduce the risk the numerous complications associated with this common disease. [sic]
Also highly recommended: Rosie Schwartz's "Gluten Be Gone!"--a related article from Canada's National Post (June 5, 2007).
Thanks to dietitian Shelley Case for spreading the word about the article and this thorough survey, on which she played a leading role.
Sunday, June 03, 2007
PEOPLE ARTICLE
The current issue of People--dated June 11, 2007, it asks "What Happened to Lindsay Lohan?" on the cover--includes a two-page article devoted to celiac disease. The issue is unlikely to appear on the magazine's website, but it should be readily available at newsstands, libraries, and waiting rooms. More on the waiting rooms later.
The article defines celiac disease as "an autoimmune ailment, triggered by gluten, that damages the lining of the small intestine." Opening with a classic-sounding case of celiac disease in a three-year-old whose symptoms included severe anemia and belly distension, it covers the challenge of switching to a gluten-free medical diet as well as recent improvements in labeling and product availability that make the adjustment easier.
From a medical perspective, the article states that celiac disease "may affect as many as 1 percent of Americans...although many may be misdiagnosed and some suffer from only minor symptoms." It refers to Dr. Green (pictured) as saying that the time between onset and accurate diagnosis averages 11 years. It also mentions that women are twice as likely to have celiac disease and lists some of the manifestations: fatigue, anemia, infertility, osteoporosis, some cancers, vitamin deficiencies, abdominal bloating and pain, both diarrhea and constipation, and even irritability.
The story also includes a photo of Danna and her family with a toaster (marked GLUTEN-FREE...Good for me!), another shot of Danna with Sarah Givens and her daughter, and a funny sidebar image showing gluten-containing foods marked with yellow CAUTION tape.
The article ends with Dr. Rudert advising people who suspect that they have celiac disease to get a complete blood tests, and notes that diagnosis is confirmed with biopsies of the small intestine. It refers readers seeking more information to the National Institute of Health and Danna Korn's Gluten Freedom.
So what's to be done now that People has covered celiac disease? Michael Thorn of Suffolk County Celiacs suggests emailing the magazine "to thank them for the article, share a brief personal story and/or encourage them to cover adults with CD. Praise them for covering this very common disease and ask they they do more."
And here's something else you can do: When you're in a doctor's waiting room, look for the copy of People and leave it open to page 143, where the article starts. Better yet, find out if the article can be kept in the waiting room and otherwise made available for other patients to read.
Dr. Green has talked about raising awareness of celiac disease in doctor's offices. This People article could be very useful in achieving that goal.
PS The April 9, 2007, People briefly referred to celiac disease in an item on Elisabeth Hasselbeck.
Wednesday, May 30, 2007
DIGESTIVE DISEASE WEEK 2007
Nearly two weeks ago, nearly 17,000 medical types converged on Washington, DC for Digestive Disease Week 2007.
For me, the highlights of the highlights include the following:
Recovery of the small intestine is often incomplete after a gluten-free diet and the resolution of symptoms.
Clinical presentation among seniors (65 and older) can differ from clinical presentation among younger adults (18-30).
Baboons may provide an animal model of human celiac disease for research.
HLA genotypes DQ2 and DQ8 are found in nearly all celiac disease patients. [NOTE It is very common to test positive for DQ2 and/or DQ8 and be negative for celiac disease.]
Dr. Peter Green of the Celiac Disease Center at Columbia had a hand in many of the studies cited by Dr. Fasano.
I expect to learn more about at least some of the findings at a later date.
Wednesday, March 14, 2007
THE VIEW SPREADS THE WORD!
Today's much-anticipated View segment on celiac disease could mean a major improvement in the lives of many Americans. Thanks to the speedy work of the The View and the National Foundation for Celiac Awareness (NFCA), most of the coverage is already online via YouTube! (There's a little bit missing--I'll cover it in this post.)
This type of coverage is important and valuable because correctly diagnosing and treating celiac disease is a major public health issue in the United States. "As many as 3 million people in the United States have celiac disease but only about a tenth have been diagnosed, wrote Susan J. Landers in this American Medical News, referring to the findings of an independent panel of experts convened by the National Institutes of Health.
So how could more than 2.5 million Americans be unaware that they have celiac disease? Some of them were diagnosed with celiac disease years ago but incorrectly deemed "cured." (They might have been called "banana babies" because of the medical diet they were on.) Others may have been misdiagnosed or incompletely diagnosed by doctors who failed to test them for celiac disease, mistakenly thinking it too rare to consider. Testing for celiac disease with an informed physician is a relatively simple process, but because doctors underestimate the condition, it typically takes many years for patients to get correct celiac diagnoses after they first showed worrisome symptoms.
The intro to the show promised "Elisabeth's revealing her battle with celiac disease...finding out why it's easily misdiagnosed...and how it can lead to everything from infertility to cancer."
As you can see in the video, Dr. Green offered a mini-presentation during which he noted that the manifestations of untreated celiac disease can be very varied. The ones mentioned on this particular episode included:
bloating, gas, or adominal pain (may be misdiagnosed as IBD) abnormal stool irritability or behavior changes fatigue [a very common symptom--Ed.] itchy skin rash infertility miscarriage depression intestinal cancer
Dr. Green also showed how the gluten from wheat, barley, and rye causes atrophy of intestinal villi in people with celiac disease and explained that going on a lifelong gluten-free diet leads to healing for those people: "You have to be gluten-free your entire life. It's a lifelong diagnosis. If you get diagnosed in childhood or [as] an adult, it's for the rest of your life. Because as soon as you go back to gluten, you go back in that direction, flattening your villi." Or, as Bast put it: "A change in diet can change your life."
The genetic component of celiac disease also came up. Because close relatives of people with celiac disease are more likely to have the condition, it is a good idea for first- and second-degree relatives to be tested for it too. The standard diagnosis involves having blood samples taken while one is still eating gluten, then possibly following up with an upper endoscopy. Genetic testing can be useful in certain diagnostic situations, but there is currently no genetic test that, alone, will tell you that definitely have celiac disease.
There was a talk about foods such as cornbread and soy sauce containing the forbidden gluten--but just about anything (including cornbread and soy sauce, which is why clear labeling is so valuable) can be all right for the gluten-free diet depending on how the food is made. For example, the subject of a KitKat equivalent came up. I think Elisabeth cited Glutino Chocolate Wafers (and--I think mistakenly--said they were sugar-free). The closest KitKat equivalent that I've found is Glutano's Break Bar. (She said Glutino, I say Glutano.)
The show ended with some closing remarks not in the above clip. Rosie said, "Elisabeth, I think that was great that you talked about that 'cause, you know, it's been, you've had it for a while, right?"
Elisabeth said, "I have. And it took me so long to find out that I did. If I can just help someone not have six years of just hell before they find out....Especially kids, you know, they need more labeling on foods...and I'm going to try to do anything I can to get that fixed...."
Then there was this exchange between Behar and Essman (who had mentioned being on thyroid medication):
BEHAR (conversationally) You don't have it....
ESSMAN I probably do. I am doctor-phobic so I don't go get diagnosed....You know what? I eat the stuff and I feel bad and then I don't eat wheat and I feel good. So hello?
BEHAR It sounds like it's a little more complicated. It can cause worse diseases. You need to be diagnosed.
ESSMAN And my mother has it. And it's also connected to thyroid....
BEHAR Duh!
ESSMAN You know, I treat myself as if I do, and I don't eat the wheat.
That kind of exchange should sound pretty familiar to people in celiac world. My advice: If you think you might have it, consult with an informed doctor about getting tested. It typically all begins with a blood test while you're not on the gluten-free diet.
You know what I think would be interesting? Offering screening to anyone involved with The View and finding out what the results are.
Here's a public service announcement that CNN anchor Heidi Collins made for the National Foundation for Celiac Awareness (NFCA). It's only thirty seconds long, but it makes some important points: Many Americans don't realize they have celiac disease, and the symptoms (which, I note, vary widely) can include diarrhea, headache, osteoporosis, and pregnancy complications.
The NFCA wants people to contact local television stations to get them to air this PSA. Here are details about the campaign.
Like many of us, Alice only found out she had celiac disease after a long, drawn-out period involving many frustrating visits to doctors. As Alice herself puts it, she suffered diarrhea, fatigue, bloating, a general malaise, and the trauma of a full-term stillbirth as well as several early miscarriages. Her teeth began to deteriorate and her sister-in-law wondered if she had anorexia, though doctors often observed that she looked fine.
An interesting aspect of celiac disease is that, while the above-mentioned symptoms are common, the condition can be accompanied by symptoms that are markedly different. Or no symptoms might be noticed at all. That is why testing by a well-informed doctor can be crucial. Here's the NFCA on diagnosing celiac disease.
At this week's Fancy Food Show in New York City, I enjoyed the gluten-free (and egg-free) butter crunch (sample at right) from Toronto's CocoMira.
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