Gluten-Free Coverage at LoHud.com

Includes Input from Dr. Peter Green and Two Regional Bakers

LoHud.com (which covers the Lower Hudson Valley) recently ran two Linda Lombroso articles having to with celiac disease and the gluten-free diet.

The longer article, "Eating gluten-free" (May 11, 2009) features two area bakers: Three Dogs Gluten-Free Bakery founder Karen Miller (current head of GFRAP in the greater metroplitan area) and Good Day Sunshine founder Pam Goldberg as well as Dr. Peter Green—Elisabeth Hasselbeck's celiac specialist and mine, too. Lombroso mentions a study co-authored by Green that documented the greater cost of a gluten-free diet and writes

Outside the United States, some patients diagnosed with celiac disease get a prescription for gluten-free foods, says Green. "In areas of Europe, like in Italy, the government encourages diagnosis, and all around the world, there are many countries in which gluten-free food is part of the national health care and the food is provided free."

Keep that possibility in mind when you're thinking health care reform!

The other article, "Celiac disease: a hidden epidemic?" (May 8, 2009), revolves around Dr. Green's book of the same title (sans question mark). Green encourages people who suspect that they have celiac disease to consult with their physicians about getting tested regardless of their symptoms.

"I see patients who say they asked their doctor to have the blood test, and they say: 'He said I couldn't have it because I was too fat or too tall or I didn't have diarrhea or I wasn't Irish or I wasn't Italian or I was Jewish,' because there are a lot of misconceptions about what celiac disease is like. Most people don't have classic symptoms," he says.

"If a doctor says he won't test for it, you should find a new doctor, because that just means he doesn't know the tremendous variability in the ways it can present."

Here's information about diagnosing celiac disease.

Vendors Announced for Westchester Support Group Meeting

Meeting Scheduled for Sunday, September 21, 2008

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

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

CeliaCalendar: Westchester Events

Walking, Talking, and Eating in September

As mentioned previously, the third annual Colin Leslie Walk for Celiac Disease takes place at Rye High School in Rye, New York, on September 14, 2008. This is the third edition of a fundraising event that has earned more than $113,000 over the past two years, with the money going to the Celiac Disease Center at Columbia University (CDCCU).

Calling this event a "walk" doesn't quite capture its magnitude. There is indeed a walk—but there are also vendors and talks. The vendors currently include Everybody Eats, Gaga's Inc., Gluten-Free Living, and Joan's GF Great Bakes. The speakers include Suzanne Simpson, the new nutritionist at the CDCCU and Rory Jones, who co-authored Celiac Disease: A Hidden Epidemic with CDCCU director Dr. Peter Green. Lunches and snacks will be available for purchase from the Poughkeepsie GFRAP restaurant Soul Dog.

Pre-registration, which earns you a free t-shirt and saves you $5, ends on September 2.

A week after this event, Dr. Green speaks at the September 21 meeting of the Westchester Celiac Sprue Support Group (WCSSG) at Phelps Memorial Hospital in Sleepy Hollow, New York from 2 to 4pm. This is an opportunity to learn about celiac disease from an expert; some vendors should also be present.

More Distilled Wisdom

In my previous post I touched on distilled vinegar and its lack of gluten, the point being that, contrary to myth, distilled vinegar is appropriate on a gluten-free diet, and that any problems one might have with the vast majority of vinegars would not be due to gluten. Rather than assume that a vinegar has gluten in it, it is reasonable to assume that there's a good chance that any vinegar that is not a malt vinegar is free of gluten, and it would not be a hopeless gesture to check ingredients and contact food producers to clear up any lingering doubts you might have about any vinegar you'd like to try.

Anyway, today I figured that I might as well go ahead and say the same thing about distilled alcohol—spirits such as plain gin, vodka, and whiskey. The distillation would eliminate any gluten that might be in the ingredients of those hard liquors.

Gluten-Free Living states, "Distilled alcoholic beverages are gluten free because distillation effectively removes gluten from wheat. They are not gluten free if gluten-containing ingredients are added after distillation, but this rarely, if ever, happens."

And Celiac Disease: A Hidden Epidemic states, "The distilling process eliminates the gliadin fragment from spirits made from wheat, rye, and barley (e.g. bourbon, vodka, scotch). If spirits contain flavoring that is added in after the alcohol is distilled, it is not necessarily safe." (Gliadin is a fraction of gluten that is toxic for people with celiac disease.)

So, if such spirits make you sick, it's extraordinarily unlikely that the problem would be due to gluten or the smaller gliadin in the booze. Many people with celiac disease do drink hard liquor safely (and, of course, always in moderation). Perhaps your intestines are insufficiently healed from eating gluten elsewhere. Or perhaps there is a co-existing condition. Both scenarios are far more likely.

For instance, consider this, from the National Institute of Health: "There are no known foods that cause Crohn’s disease. However, when people are suffering a flare in disease, foods such as bulky grains, hot spices, alcohol, and milk products may increase diarrhea and cramping." Some people do have Crohn's disease as well as celiac disease.

And also remember that hard liquor, like vinegar, is a "strong" substance. Many people do react poorly to it—especially in large quantities. I don't use the stuff to clear drains, but just look at this list and this list of uses for vodka! Some of them have to be for real, right?



Source (00:28)

FOCUS ON MALE OSTEOPOROSIS

Addendum: A related article appeared on Science Daily (July 25, 2008) soon after most of the following was originally posted. Note, however, that the claim that "It is widely known that among adults [with celiac disease] gluten-free diet alone is not sufficient make the bone damage regress" is something of an overstatement, as a calcium rich gluten-free diet can result in at least some improvement.

Celiac disease is a risk factor for osteoporosis, including male osteoporosis, as noted in Dawn Klingensmith's Philadelphia Inquirer article "Tough Men, Brittle Bones" (July 28, 2008).

As described in Celiac Disease: A Hidden Epidemic, osteoporosis or some other form of bone disease is actually common among people with undiagnosed celiac disease, with the men tending to have the lower bone density.

Approximately 75 percent of newly diagnosed patients with celiac disease have some degree of bone loss. Recent studies show that up to 35 percent of adults who are newly diagnosed with celiac disease have established osteoporosis. While both osteoporosis and celiac disease are more common in women, low bone density is an equal-opportunity complication in the celiac community. And men with celiac disease tend to have more severe osteoporosis.

So doctors and patients should be alert to the possibility that men can have osteoporosis, and that celiac disease is a risk factor. A man (or woman) who tests positive for celiac disease should be considered as also being at risk for osteoporosis—even when a CBC doesn't send up any red flags, the celiac diagnosis is in itself a red flag. Likewise a patient who tests positive for osteoporosis or osteopenia should be considered as possibly having untreated celiac disease—especially if a cause of the condition seems hard to determine. [See related article.]

Many medical professionals may recommend testing for osteoporosis for patients at an advanced or after a fracture. However, in this layperson's opinion, an early baseline test is worth serious consideration.

As noted elsewhere in this blog, current drug therapies for osteoporosis seem to yield encouraging results, but there may be significant negative side effects from, say, taking oral bisphosphonates for more than five consecutive years, or from taking intravenous treatment if a patient is not properly vetted for dental and other issues.

If early testing (say, between 20 and 40) reveals a bone density problem, the condition may be largely or entirely treatable with diet and exercise, even if the patient has just started a gluten-free diet after being newly diagnosed with celiac disease. Celiac Disease: A Hidden Epidemic puts it this way: "The overwhelming evidence and statistics that connect celiac disease to osteopenia and osteoporosis make a compelling case for prevention as well as early screening for the conditions. Early diagnosis and therapy are critical to permit patients with celiac disease to achieve normal peak bone mass and then maintain it."

FREE OFFER: THE ULTIMATE GUIDE TO GLUTEN-FREE LIVING

The Ultimate Guide to Gluten-Free Living, a booklet (the size of a memo pad) published by the Celiac Disease Center at Columbia University (CDCCU), is available free to those who respond to an offer before this Friday, July 25, 2008.

You can find out more about the offer at Nancy Lapid's Celiac Disease Blog.

For a more extensive source about celiac disease, check out Celiac Diseae: A Hidden Epidemic by Dr. Peter Green of the CDCCU and science writer/film producer Rory Jones of the Westchester Celiac Sprue Support Group (WCSSG).

WHOLE FOODS HAPPENINGS

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.

FIBROMYALGIA AND IBS: CELIAC DISEASE IN DISGUISE?

Could some people diagnosed with fibromyalgia actually be suffering from celiac disease? The National Fybromyalgia Association seems to think so. The May-August issue of its magazine Fibromyalgia Aware includes an overview of celiac disease written by Elaine Monarch of the Celiac Disease Foundation.

Available on PDF, the article--"Are You the One?"--cites nationally recognized research to establish how nearly 3 million Americans are estimated to have undiagnosed celiac disease, then states

A study by one nationwide celiac disease support group* indicated that among adults ultimately diagnosed with celiac disease, 9 percent were orginally diagnosed with fibromyalgia and 30 percent with IBS. Since many patients with CD have muscle aches, joint pains, GI symptoms, and fatigue, it is understandable that those people might get a label of fibromyalgia.

In addition to the tender points exam, the diagnosis of fibromyalgia is based on a number of symptoms that can be due to other conditions--celiac disease among them. This is further evidence that different so-called "silent" symptoms need to be taken seriously by physicians and thoroughly evaluated before a diagnosis of fibromyalgia (or IBS) is given.

People diagnosed with celiac disease typically experience greatly improved health when excluding wheat, barley, and rye from their diets. Diagnostic testing for celiac disease should, however, take place while one is still eating those foods.

* Cited in Dr. Peter Green's book Celiac Disease: A Hidden Epidemic.

MEETING: WESTCHESTER SUPPORT GROUP

A family-friendly program awaits those who attend the next meeting of the Westchester Celiac Sprue Support Group (WCSSG) from 2:00-4:00 pm on Sunday, March 11, 2007 at Phelps Memorial Hospital in Sleepy Hollow.

The guest speaker is Tracey Keegan, co-founder of the Celiac Support Group at Children's Hospital in Boston. According to the WCSSG newsletter, she'll talk about cooking and children, shopping and eating out, emotional strategies for families, and "what kids have to say." (I hear they say the darndest things!)

What's that you say? You've actually got kids?? Well, good news for you: There will be a separate, supervised children's meeting with a puppet show about coping at school. It includes a section about explaining gluten and celiac disease to friends.

For all attendees, there will also be samples of Gaga's Sherbetter, sales of the books Celiac Disease: A Hidden Epidemic and The Gluten Free Kid, and vendors Mr. Ritt's, Gilbert's Gourmet Goodies, and Julianna's Delectable Fruits. I apologize for posting this a tad late for a guaranteed Mr. Ritt's pre-order, but you can still try for a late order by calling 1-877-677-4887.