CELIACTODAY

Raising awareness about celiac disease is far and away the highest priority of support group leaders throughout the country.

That’s the conclusion of interviews by CeliacToday.com with group leaders in more than two dozen of the nation’s largest metropolitan areas.

In the telephone interviews, CeliacToday.com asked group leaders to name the three most important issues facing the celiac community nationwide. Their answers were grouped into the following six categories.

Ruth Smith, head of the Celiac Sprue Association of Greater Chicago, was one of the leaders who put awareness at the top of the list.

“People are beginning to pick up on it (celiac disease), and we can’t slow down,” said Ms. Smith, who is also a former president of the Omaha, Neb.-based Celiac Sprue Association, one of the three national support organizations.

Janet K. Rinehart, chairman of the Houston Celiac Support Group and also a former CSA president, named awareness as the top priority, too, but with a sharp focus on physicians.

'First Line of Defense'

“They still don’t get it,” Ms. Rinehart said. “Family doctors and internists ought to be the first line of defense.”

The stakes are high, noted Jennifer Sullivan, leader of the Las Vegas Celiac Disease Support Group. “If more doctors were focused on celiac,” Ms. Sullivan said, “we wouldn’t have to worry about children having failure-to-thrive issues and being sick for so long.”

The Las Vegas group is an affiliate of the Studio City, Calif.-based Celiac Disease Foundation.

Doctors aren’t the only members of the medical profession who need to be reached, said Phyllis Farmer, who helps run the Maryland Chapter CSA/USA in Baltimore.

“Dieticians still need to be educated big-time,” Ms. Farmer said. “Because they are still back in 2000.”

Testing First-Degree Relatives

Chris Spreitzer, who runs the Westchester (N.Y.) Celiac Sprue Support Group along with her husband Mike, says awareness efforts also should focus on getting first-degree relatives tested for celiac as soon as someone in the family has been diagnosed.

Ms. Spreitzer’s family is all too aware of the genetic link: her husband and their three daughters all have celiac.

Here are group leaders' other top priorities:

#2. ‘Ease of Eating’

Not surprisingly, leaders are focused on ways to ease the practical challenges of following the celiac diet in everyday life.

Susan Cummings and Tara Taft, co-chairs of the Celiac Support Group at Children’s Hospital Boston, put a priority on making gluten-free foods more “mainstream” by increasing their availability in stores, restaurants and schools.

Ms. Sullivan, leader of the Las Vegas group, feels there is a particular need to increase the variety of GF foods available in smaller cities and towns.

Focusing on Seniors

Ms. Smith of the Chicago group says the celiac community should begin to focus on the dietary needs of senior citizens in assisted-living centers.

“Their needs are not being met,” Ms. Smith said. “This has to be addressed because there’s going to be more of them every year.”

Ellen Switkes, founder of the Oakland/San Francisco Celiac Support Group, would put a greater emphasis on educating restaurant managers, chefs and wait staff. “Eating out continues to be a challenge,” she noted.

#3. Greater Unity

Divisions within the celiac community on the national level are on the minds of many local leaders. The topic arose spontaneously in many interviews, making it the No. 3 priority of the group leaders interviewed.

“I wish there was just one national celiac organization,” said Lee Graham, head of the Greater Boston Celiac/DH Support Group, which is better-known by its nickname, the Healthy Villi.

It was an oft-repeated theme. Earl Ley, coordinator of Seattle Celiacs, for example, noted that a single organization could help make local support groups more effective by establishing common standards and practices.

Aiming for 'Self-Improvement'

“Professional associations do this all the time,” Mr. Ley noted. “They have friendly competitions to pick things like ‘Chapter of the Year,’ or ‘Newsletter of the Year,’ and it becomes an overall self-improvement effort.”

Currently, there are three national support organizations: Celiac Disease Foundation, Studio City, Calif.; Celiac Sprue Association, Omaha, Neb., and Gluten Intolerance Group, Auburn, Wash.

Several leaders expressed the view that, even if the groups don’t come together formally, they should coordinate activities and opinions, particularly when it comes to the celiac diet.

“Everyone needs to agree on what the diet is,” said Mary Kay Sharrett, founder and dietician-advisor at the Gluten-Free Gang of Central Ohio, based in Columbus, Ohio.

Local support groups cooperate well, said Ms. Sullivan of the Las Vegas group. “It would be nice if the national groups did, too.”

#4. Better Labeling

More work is needed on labeling foods for their gluten content, support group leaders believe. The allergen-labeling law of 2006 doesn’t go far enough, they say. And they doubt that the government’s definition of “gluten-free,” which the U.S. Food and Drug Administration is to issue by August, will give people with celiac the information they need to purchase foods with full confidence.

For example, Les Doti, co-founder of Suffolk County Celiacs on Long Island, N.Y., noted that the current labeling law falls far short of what someone on a gluten-free diet needs.

“The food labeling law has to be changed to include barley, rye and oats,” Mr. Doti said. “A lot of people are walking around saying, ‘Gee, it (a labeled food item) doesn’t contain wheat. I should be able to eat it.’”

(Editor's note: Opinions differ about the safety of oats in the celiac diet.)

Broader Coverage Urged

Gina Meagher, president of the CSA Denver Metro Chapter, would like to see labeling laws extended to cover restaurants and wholesale food distributors.

Ms. Sharrett, of Ohio’s Gluten-Free Gang, pointed to food-label disclaimers as another trouble spot. If a label says a product is “made in a facility that also process wheat,” people with celiac often are unsure of whether it’s safe.

Support groups themselves have work to do in the area of food labeling, said Ms. Spreitzer of the Westchester group.

“I constantly come across people who are not aware of the new labeling law, and people who don’t know how to read labels,” Ms. Spreitzer said. “That’s an education piece” that needs doing.

#5. Serving Celiacs

Serving celiacs is why support groups exist, so calling it a national priority is somewhat redundant. Yet, some group leaders feel a new urgency about finding and helping people newly diagnosed with celiac disease.

“With what’s out there now – web sites, celiac information books, celiac cook books, the labeling law, manufacturers promoting their gluten-free products – I’m finding that new people have fewer and fewer questions,” said Kathy Button, founder of Ventura County Celiacs, northwest of Los Angeles.

The problem, Ms. Button said, is that much of the available information often is inaccurate or incomplete. A support group can help assure that newly diagnosed celiacs get accurate information, she said.

A Question of Balance

A support group also can promote the need for proper nutrition and dietary balance. “There are so many nutrient-void gluten-free products out there,” Ms. Button said. “I tell people, ‘Get some balance in your diet.’”

Keeping long-diagnosed celiacs in the support group is as critical as recruiting new ones, said Mary Guerriero, president of Detroit’s Tri-County Celiac Support Group.

“Once people become comfortable with the lifestyle, they often feel they don’t need the group,” Ms. Guerriero said. “But, if you don’t need the group, the group needs you” to share experience and knowledge with newly diagnosed celiacs.

#6. Medical Research

Support group leaders have medical research on their radar screens in a variety of ways.

For example, Karen Dalyrmple, co-president of the Greater Philadelphia Celiac Support Group, would like to see more funding for research into a non-dietary treatment of celiac disease.

Betty Barfield, president of the North Texas Gluten Intolerance Group in Fort Worth, Texas, noted that discrepancies remain about testing procedures and standards for celiac disease. She would like to see research done to settle those questions.

Keying Into Momentum

As they evaluate priorities, group leaders are excited about the celiac community’s progress and momentum. One such leader is Phyllis Kessler, who was a high-powered publishing executive in New York City until retiring to Palm Beach, Fla., several years ago.

The charm of retirement soon faded, however, so Ms. Kessler began organizing the Palm Beach County Celiac Support Group. The organization, one of the fastest-growing celiac support groups in the country, now covers all of southern Florida.

“Other than motherhood,” Ms. Kessler said, “this is the most rewarding thing I’ve ever done.”

This story originally appeared in the (March, 2008 ) issue of CeliacToday.com. It was most recently updated in (October, 2009).