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Posted 6/2/08
A major goal of the American Celiac Disease Alliance (ACDA) is to improve the availability and access to gluten-free meals in schools for students with celiac disease. Recently, the ACDA was approached to work on a collaborative project which will help move us closer to achieving that goal. One of the first steps of the project is to determine the level of interest for gluten-free school lunches.
The ACDA has launched a brief online survey to find out who is providing lunch for student's with celiac disease - parents, school, or a combination.
If you have a child with celiac disease attending school, please complete the survey by going to:
https://www.surveymonkey.com/s.aspx?sm=83OFWWSzHfAtSoh9vRH8Pg_3d_3d
Your input is vitally important to demonstrate that our children want and need gluten-free meals at school. The survey will close on July 2, 2008.
If you have any questions about the survey, or issues regarding the accessibility of gluten-free foods in school, please contact the ACDA at info@americanceliac.org.
Thank you for helping us help our kids!
Andrea
Andrea Levario
Executive Director
American Celiac Disease Alliance
www.americanceliac.org
Check out Food & Health : Laws & Politics from http://www.Foodconsumer.org
Make a Difference posted 9/6/2006
Please add your request to make May National Celiac Awareness Month. Click on the link below so your voice can be heard:
http://capwiz.com/celiac/issues/alert/?alertid=5938561
HEALTH WATCH
Good news, bad news
Label law is boon to many, but not all, food-allergy sufferers
By Janet Helm
Special to the Chicago Tribune
Published January 11, 2006
If you have food allergies, it will now be easier to spot ingredients that could make you sick. A new federal law that took effect this month requires food labels to list consumer-friendly terms for eight major allergens: milk, eggs, fish, shellfish, peanuts, tree nuts, soybeans and wheat.
So instead of "albumin" you'll now see "eggs" listed on the label. Instead of vague terms like "seasonings" you'll know if it came from wheat.
For people with celiac disease or gluten intolerance, the new law is a mixed blessing. Wheat, the major source of gluten, will be clearly called out--which will take the guessing game out of label reading for that grain. But companies are not required to list "gluten" on labels or identify additional sources of this grain protein, such as barley and rye.
Mary Schluckebier, executive director of the Celiac Sprue Association, based in Omaha, said the new law is a "step forward" but it stops short of what would be most valuable to those with celiac--which is estimated to be one in 100 Americans, or 3 million adults and children.
A former wheat farmer who now heads up the largest member-based organization supporting individuals with celiac disease, Schluckebier urged Congress to expand the "big eight" list to include barley, rye and oats. These gluten-containing ingredients are often hiding out in common additives such as thickeners, stabilizers and emulsifiers.
Schluckebier's group also is calling for stricter enforcement of the claim "gluten-free," which now appears on more than 3,000 products, according to SPINS Inc., a San Francisco market research firm that tracks the natural foods industry.
But there is no federal standard for "gluten-free" so companies are coming up with their own definition, Schluckebier said.
The Celiac Sprue Association randomly tests products labeled as gluten-free to see if they're truly free of gluten--and often they're not.
"We don't want to be whistle-blowers," she said. "Our goal is to work with the companies to help make the products a risk-free choice for people with celiac disease."
The new law mandates that the term "gluten-free" be defined by 2008.
A hidden epidemic
Celiac disease (also known as celiac sprue) is an autoimmune disease--just like type 1 diabetes or rheumatoid arthritis. Our immune system ordinarily helps to keep us from getting sick. But for celiacs, their immune system attempts to "fight" gluten. The result can be severe damage to the lining of the small intestine.
Until recently, doctors thought celiac disease was rare in the United States. That perception is changing.
"Celiac disease is finally getting more attention, but that has not trickled down to an increased rate of diagnosis," said Dr. Peter Green, director of the Celiac Disease Center at Columbia University and author of "Celiac Disease: A Hidden Epidemic" (Harper Collins, February 2006). "It's not on the radar screen of many physicians in this country."
Researchers estimate that 97 percent of people who have celiac disease remain undiagnosed and untreated. Patients are often first diagnosed with other conditions, Green said. The digestive woes--from abdominal pain to bouts of diarrhea--are frequently thought to be lactose intolerance, irritable bowel syndrome or simply stress.
A definitive diagnosis is confirmed by a blood test followed by a tissue sample of the intestine.
If left untreated, celiac disease keeps the body from absorbing needed vitamins and minerals, often leaving a person anemic and malnourished. Celiac also is linked to an increased risk of osteoporosis, infertility and even certain cancers.
Kimberly Eberl, 28, of Chicago, never heard of celiac before she learned she had the disease three years ago.
"I was relieved at first because I knew something was wrong but nothing was pinpointed," said Eberl, who complained of fatigue for several years before being diagnosed. "Then there's a wave of frustration when you learn how many foods contain gluten."
Eberl started a local support group called "MetroCeliacs" to help city dwellers like herself cope with the condition. The group organizes supper clubs to the growing number of restaurants offering gluten-free menus, including Wildfire, P.F. Chang's, Ben Pao, Outback Steakhouse and Adobo Grill.
Avoiding gluten when eating out is a trickier feat than one might expect. It's much more than skipping the bread basket or ordering your salad without croutons. Wheat, rye and barley are in products ranging from soy sauce to beer, and are often used in marinades, sauces and salad dressings.
Dining out also was challenging for Kim Koeller after she was diagnosed with celiac disease. That's why she created a new Chicago-based company called GlutenFree Passport to provide dining and travel guides for people with celiac and food allergies.
In her first book, "Let's Eat Out! Your Passport to Living Gluten and Allergy Free" (R & R Publishing), Koeller and co-author Robert La France provide sample menus and suggested questions about ingredient and preparation techniques.
For example, they suggest finding out if the French fries are cooked in the same fryer as the beer-battered onion rings, or if the fish fillet is flour-dusted before sautéing. Artificial bacon bits, imitation crabmeat, instant mashed potatoes, bouillon and flour-thickened sauces are other ways gluten can sneak onto your plate.
Surge in gluten-free foods
Because there is no pill or medication available to fight celiac disease, the only known treatment is to banish gluten for life.
A diagnosis can be a bit "disruptive" to the entire family, according to Lara Field, a pediatric dietitian at Children's Memorial Hospital in Chicago. She helps children and their families focus on the array of naturally gluten-free foods that can be enjoyed, such as fruits, vegetables, plain meats, eggs, beans, nuts and dairy products.
A growing number of commercially prepared gluten-free products are becoming available in stores. Supermarket sales of gluten-free products have reached $683 million, a jump of 13 percent since last year, according to SIMS, Inc. The surging demand appears to go beyond the celiac community.
Some people have adopted a gluten-free lifestyle in hopes of losing weight or having more energy. Others believe it can help family members with autism or multiple sclerosis. (This is based more on anecdotal reports than scientific evidence.)
Experts warn that relying on gluten-free products may make it more difficult to get enough fiber, iron and B vitamins because few products are enriched with them.
For people newly diagnosed with celiac disease, consultation with a registered dietitian is critical to help learn the complexities of a gluten-free diet and the nutritional challenges, said dietitian and celiac expert Shelley Case, author of "Gluten-Free Diet: A Comprehensive Resource Guide." She said it's also important to be positive, focusing on the wide variety of options that are available today to make it easier to live gluten-free.
Getting rid of gluten
Gluten is the protein found in wheat, barley and rye. For people with celiac disease, gluten must be strictly avoided. One challenge is the lack of consensus on what constitutes a gluten-free diet, according to Peter Green, director of the Celiac Disease Center at Columbia University. Conflicting information also is found on Web sites and touted by different celiac support groups.
Here's his advice on going gluten-free.
Safe grains: amaranth, buckwheat, corn, millet quinoa, rice, sorghum, teff, oats*
Grains to avoid: wheat (includes spelt, kamut, semolina, triticale), rye, barley (including malt)
Additives to avoid: wheat starch, modified food starch (from wheat), malt, malt flavoring, malt vinegar hydrolyzed vegetable or plant protein, soy sauce
*The latest research reveals that most people with celiac disease can tolerate oats. Historically oats were not allowed because they could be contaminated with wheat or barley.
To learn more:
American Celiac Disease Alliance, www.americanceliac.org
Celiac Sprue Association, www.csaceliacs.org
MetroCeliacs, www.metroceliacs.com
GlutenFree Passport, www.glutenfreepassport.com
University of Chicago Celiac Disease Program, www.uchospitals.edu/specialties/celiac
Check out the AMA’s Patient Action Network at
http://www.patientsactionnetwork.com/index.aspx
Check out this link for the U.S. Food and Drug Administration’s Questions and Answers Regarding Food Allergens, including the Food Allergen Labeling and Consumer Protection Act of 2004
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