CELIACTODAY

Celiac support groups around the country are experiencing rapid growth.

The membership surge is the result of increasing rates of diagnoses, and efforts by local support groups to find newly diagnosed celiacs as quickly as possible.

For example, the membership roster of the Gluten-Free Gang of Central Ohio has doubled to 200 in the past few years.

Big Jump in Diagnoses

Three or four patients a week are getting diagnosed with celiac disease at Children’s Hospital in Columbus, where the group is based, according to Mary Kay Sharrett, the group’s founder and dietician-advisor. “Three years ago, it was maybe three or four a month,” Ms. Sharrett said.

“Celiac is becoming more widely recognized,” said Lynn Rainwater, coordinator of the Alamo Celiac Gluten Intolerance Group, based in San Antonio, Texas. “Thank goodness!”

The Alamo group, an umbrella organization for separate support groups in San Antonio, Austin and Corpus Christi, saw its membership grow 25 percent last year to approximately 370 members.

Nationwide Experience

CeliacToday.com heard similar stories again and again in telephone interviews with more than two dozen local leaders across the U.S.

In Colorado, for example, membership in the Denver Metro Chapter of the Celiac Sprue Association has doubled in three years to 700.

In Illinois, the CSA Greater Chicago Chapter added more than 70 members last year, bringing total membership to about 500.

Membership in the Las Vegas Celiac Disease Support Group has soared to about 400 families today from around 50 three years ago.

In southern Florida, the Palm Beach County Celiac Support Group has grown to 200 members in less than three years.

Boston Group Gets Bigger

Even the country’s largest local support group, the Greater Boston Celiac/DH Support Group, with 850 members, continues to grow at a better than 10 percent annual rate.

Here are the country's 20 largest local support groups, based on the CeliacToday.com research. (In fact, 21 groups are listed because five groups report membership of about 200 persons.)

The membership growth trend is encouraging, because it shows that the medical community is responding to local and national efforts to increase awareness of celiac disease. And group leaders feel strongly that raising awareness must remain a priority.

'Testing for Celiac First'

“Our membership is getting younger. The doctors are getting smarter,” said Phyllis Kessler, head of the Palm Beach group. “They’re testing for celiac first, rather than last.”

Local leaders are searching out new members in a variety of ways.

When the North Texas Gluten Intolerance Group was formed four years ago, for example, the Fort Worth, Texas-based group’s leaders targeted gastroenterologists in particular.

The Texas group’s leaders mailed materials about celiac to local GIs to distribute to newly diagnosed celiacs, including a list titled “Fifty Things You Can Eat Right Now.”

“That helped bring people in right away,” said group President Betty Barfield. “It made it easier for the doctors, too,” by allowing them to tell patients what they could it, not only what the gluten-free diet prohibits.

Downturn in Detroit

To be sure, the growth story is not uniform across the country. In some cities, growth appears to have slowed after several years of rapid expansion. And in a few cities, membership in the local support group actually is declining.

In Detroit, for example, membership in the Tri-County Celiac Support Group topped 1,000 a few years ago, but now is down to about 700.

“I think people get so much information off of the Internet, they don’t feel that they need a support group,” said Mary Guerriero, group president.

Ms. Guerriero also suspects that many people dropped out after the group stopped publishing a gluten-free shopping guide. She noted that the 2006 federal allergen labeling law reduced the need for the guide, which had been popular with members.

St. Louis Goes Electronic

In St. Louis, Mo., the Bi-State Celiac Support Group has all but stopped holding regular meetings. The group now is largely an Internet-based information exchange, said Barbara Berger, a board member.

“We’re just kind of feeling our way, and seeing what we can get people to come to,” Ms. Berger said.

The group stopped meeting partly because fewer and fewer people were showing up, and partly because no one volunteered to take over the group when the former leadership was ready to step down.

Some group leaders also point to a big generational difference between long-time celiacs and younger adults who are newly diagnosed.

Question of Perception

“Our group tends to be an older group,” said Carol Hansen, a board member of the Northland Celiac Support Group in St. Paul, Minn. “We tend to lose new members because they think of the older people as ‘fogies.’”

Consequently, the Northland group, whose membership has been flat for two years, is considering splitting into two groups, one each for older and younger families.

By and large, however, groups are growing—and that is creating challenges of its own.

The Celiac Support Group at Children’s Hospital Boston, for example, has twice outgrown the space where it holds its annual holiday party. Its 2007 party drew 350 people.

The Denver group’s expansion was too much for some members. “With our membership growing so large, people felt they weren’t in touch with anybody,” said Gina Meagher, president of CSA Denver.

Dining Out in Denver

So, now, the group has divided the metro area into 11 “neighborhoods,” whose members meet for dinner monthly at celiac-friendly restaurants.

Nearly universally, finding volunteers to help run larger groups and events is a challenge.

“Volunteers are hard to come by,” said Janet Y. Rinehart, chairman of the Houston Celiac Support Group, adding wryly, “The busy people are able to do this, somehow.”

The type of volunteer job makes a difference. For example, Suffolk County Celiacs, located on Long Island, N.Y., has had difficulty recruiting a newsletter editor and a webmaster. But when the group organizes a vendor fair, it gets three times as many volunteers as it needs.

“As long as it’s a job that’s not regular or consistent, you can get help,” said co-founder and board member Les Doti.

Getting to 'Yes'

Houston’s Ms. Rinehart finds that personal contacts work best for recruiting volunteers. “It’s hard for people to say ‘no’ when you’re talking to them face-to-face,” she said.

The head of Boston’s Healthy Villi, Lee Graham, said she is blessed with a plentiful supply of volunteers, but that she doesn’t take it for granted. She is lavish in praising them, and sends a hand-written thank-you note when someone has accomplished a task.

Ms. Graham also keeps a list of everything each volunteer has done, both to remind herself of each person’s expertise and to avoid over-using anyone. “They’re my lifeblood,” she said. “I can’t live without them.”

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