Posted 04/24/07
May is approaching fast and legislation endorsing it as National Celiac Disease Awareness month is awaiting congressional action. 

H.Con.Res. 70, introduced by Rep. Lowey (NY), also calls on Congress to increase funding for celiac research. 

TAKE ACTION to help raise awareness about the world's most common genetic disorder. 

Go to www.americanceliac.org/advocacy.htm  and click on 'Action Alert'  or http://capwiz.com/celiac/issues/alert/?alertid=5938561&type=CO  Ask your legislator to cosponsor and support H.Con.Res 70.

Andrea Levario
Executive Director
American Celiac Disease Alliance
www.americanceliac.org

Cynthia Kupper, RD, CD
Executive Director
Gluten Intolerance Group of North America
31214 - 124 Ave SE, Auburn,WA 98092-3667
Phone: 253-833-6655  Fax: 253-833-6675
www.GLUTEN.net
www.GFCO.org
www.GlutenFreeRestaurants.org

Posted 02/08/2007
FDA Proposed GF Labeling: Express Your Opinion

The FDA's proposal for labeling products 'gluten-free' was published on 1/23/07 (see below). Public comments on the proposal are due by 4/23/2007.

The FDA has requested feedback from consumers, manufacturers and professionals on several key issues relating to the gluten-free diet, how individuals make choices about gluten-free products, and how the proposal could impact consumer decisions.

It is important that dietitians speak out on this issue – both for the consumers they counsel and from the nutrition professional’s standpoint.

Today, the American Celiac Disease Alliance (ACDA) is launching a survey focused on several questions posed by the FDA. The survey was developed by dietitians with expertise in the gluten-free diet and who are associated with the Dietitians in Gluten Intolerance Diseases (DIGID), a specialty subunit of the American Dietetic Association.

Please take a few moments to complete this very important survey. The results will be compiled and presented to the FDA by the ACDA and summarized for this listserv.

Individuals may access the survey through the following link http://www.surveymonkey.com/s.asp?u=85433223016 or from the ACDA website: www.americanceliac.org 

The survey will close on March 15, 2007.
Your comments will help to influence what type of GF labeling will be allowed in the United States.

From: American Celiac Disease Alliance [ mailto:info@americanceliac.org ]
Sent: Monday, January 22, 2007 12:59 PM
To: Celiac Listserv
Subject: FDA Announces Proposed Rule on GF Labeling

The FDA released the long-awaited proposed rule on gluten free labeling earlier this morning. The text of the proposal will be published in tomorrow's Federal Register.

In very brief summary, the FDA is proposing to set a standard of 20 part per million as the acceptable level of gluten allowed for a product to be labeled as 'gluten-free.'

SUMMARY: The Food and Drug Administration (FDA) is proposing to define the term "gluten-free" for voluntary use in the labeling of foods, to mean that the food does not contain any of the following: An ingredient that is any species of the grains wheat, rye, barley, or a crossbred hybrid of these grains (all noted grains are collectively referred to as "prohibited grains") ; an ingredient that is derived from a prohibited grain and that has not been processed to remove gluten (e.g., wheat flour) ; an ingredient that is derived from a prohibited grain and that has been processed to remove gluten (e .g., wheat starch), if the use of that ingredient results in the presence of 20 parts per million (ppm) or more gluten in the food; or 2O ppm or more gluten. A food that bears the claim "gluten-free" or similar claim in its labeling and fails to meet the conditions specified in the proposed definition of "gluten-free" would be deemed misbranded. FDA also is proposing to deem misbranded a food bearing a gluten-free claim in its labeling if the food is inherently free of gluten and if the claim does not refer to all foods of that same type (e.g., "milk, a glutenfree food" or "all milk is gluten-free") . In addition, a food made from oats that bears a gluten-free claim in its labeling would be deemed misbranded if the claim suggests that all such foods are gluten-free or if 20 ppm or more gluten is present in the food.

http://www.fda.gov/OHRMS/DOCKETS/98fr/05n-0279-npr0001.pdf

The American Celiac Disease Alliance (ACDA) applauds the FDA on today's release of its proposed rule on gluten-free labeling.  The proposal was required as part of the Food Allergen Labeling and Consumer Protection Act of 2004, which the ACDA strongly supported.  Our members provided background information and collaborated with the FDA on this measure.

We look forward to reviewing the proposed rules, and providing our comments to the FDA.

The public will have 90 days from the date of publication to submit comments on this proposal.

Andrea Levario, J.D.
Executive Director
American Celiac Disease Alliance
4331 E. Baseline Road
Ste B105 - # 216
Gilbert, AZ  85234-2961
(703) 622-3331
info@AmericanCeliac.org
http://www.AmericanCeliac.org

Our friends at FAAN could use our support. This legislation could be important to you, if you have a child with allergies, as well as gluten intolerance. Please consider taking action NOW.

FAAN initiated the Food Allergy Labeling and Protection Consumer Act (FALCPA). FAAN fought hard for a long time before the celiac community joined the effort leading to a successful ending.

Let’s show our continued support for their work. Pass this message on to your members, family and friends.

Date: Tue, 17 Oct 2006 17:21:32 -0400
From: The Food Allergy & Anaphylaxis Network < research@FOODALLERGYMAIL.ORG >
Subject: FAAN Members: Urgent Action Needed
To: MEMBERSHIP@FOODALLERGYLIST.ORG

Dear FAAN Member,

As you know, FAAN has been working on behalf of you and your children to make American schools safer for children with food allergy. A vitally needed piece of legislation has been working its way through the Congress since late 2005, and in recent weeks there has been a new development. But, we are almost out of time! After the upcoming elections, Congress will meet only briefly to complete unfinished work.

The Food Allergy and Anaphylaxis Management Act of 2006 (S.3980), which will help assure that schools can safely manage students with life-threatening food allergies, has one last chance to pass into law this year. We need your help in urging your Senators to make it happen. All it will take is a phone call. Please take a minute to find out what you can do to help get this bill passed into law this year.

Go to http://www.foodallergy.org/calltoaction.html to learn more about the bill and how you can help convince your senators to support it. Thanks for your support! Remember, we are all in this together.

Anne Munoz-Furlong
Founder and CEO

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

From:   Celiac/Coeliac Wheat/Gluten-Free List
       [mailto:CELIAC@LISTSERV.ICORS.ORG] On Behalf Of Beth J. Hillson
Sent:   Wednesday, March 22, 2006 8:39 AM
Poster:  "Beth J. Hillson" <beth@GLUTENFREE.COM>
Subject: Task Force Becomes American Celiac Disease Alliance
-------------------------------------------------------------------------------
<<Disclaimer: Verify this information before applying it to your situation.>>

For Release on March 22, 2006

For Further Information Contact: Andrea Levario, Exec. Director info@Americanceliac.org
                                              www.americanceliac.org

Task Force Becomes AMERICAN CELIAC DISEASE ALLIANCE:
UNIFIED VOICE FOR CELIAC DISEASE

What started as a grassroots campaign urging Congress to require labeling of food allergens has become a broad based advocacy organization, American Celiac Disease Alliance, aimed at providing a uniform voice on behalf of persons with Celiac Disease.

More than two years ago, an ad hoc group of 15 leaders in the celiac community, came together to help pass the Food Allergen Labeling and Consumer Protection Act (FALCPA) in Congress. The bill became law on August 3, 2004, easing much of the guesswork in food shopping for some 11 million consumers with food allergies.

With this achievement, the Task Force realized the need for a permanent, advocacy organization, and elected to become the American Celiac Disease Alliance,Inc. (ACDA). This step formalizes the role of the Alliance as the umbrella organization representing the needs of the celiac community for the advancement of education, research, and advocacy as recommended by the NIH consensus panel on celiac disease in June 2004.

A not-for-profit organization, the mission of the ACDA is to provide a uniform voice on behalf of persons with Celiac Disease through education and advocacy initiatives.

Some of the early goals of the organization that are being considered include assisting the FDA in determining a gluten-free standard for foods manufactured or imported into in the United States. The FDA is required to create such a standard by August 2008.

Disaster preparedness and improving insurance reimbursement for dietitians who provide nutritional counseling to persons diagnosed with Celiac Disease are also on the top of the Alliance's project list.

Dietitians are a critical resource for newly diagnosed celiac patients and consultations with them are currently not reimbursed under many insurance plans. The group will be working with major health insurance providers to have dieticians paid for the services they provide to celiac patients.

ACDA is contacting key disaster preparedness groups such as the Red Cross and FEMA to help them develop protocol for meeting gluten-free diet needs during natural disasters. The group is also preparing a checklist of items that individuals should stock in case of emergency.

The ACDA is a volunteer organization headed by Executive Director, Andrea Levario, JD. The founding members of the organization are listed below.

Institutional:
Celiac Disease Center at Columbia UniversityNew York, NY, www.celiacdiseasecenter.columbia.edu
University of Chicago Celiac Disease Program Chicago, IL   www.celiacdisease.net
University of Maryland Center for Celiac Research Baltimore, MD www.celiaccenter.org

Associate Members:
American Celiac Society   www.americanceliacsociety.org
Celiac Disease Foundation  www.celiac.org
Gluten Intolerance Group   www.gluten.net

Industry Members:
Bob & Ruth's Gluten-free Dining & Travel www.bobandruths.com
Ener-G Foods, Inc.                 www.energ.com
Gluten-Free Living Magazine          www.glutenfreeliving.com
Glutino-USA                     www.glutenfree.com
Living Without                    www.livingwithout.com
Prometheus Laboratories Inc.         www.prometheuslabs.com

Affiliate Members:
Allison Herwitt
Andrea Levario, J.D.
Joseph Murray, M.D.
Michelle Pietzak, M.D.

Beth Hillson
Founder, Gluten-Free Pantry
Vice President, Product Development/Consumer Education
Glutino USA/Gluten-Free Pantry
860-633-3826 ext. 101
www.glutenfree.com

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