By Jennifer Iscol

EllenSwitkes

Ellen Switkes

What was it like to be diagnosed with celiac disease in the Bay Area 30 years ago? Ellen Switkes was the leader of the Oakland celiac support group from 1992 until 2010, when Melissa Batavia took the reins. In response to our request, Ellen kindly took the time to share the history of celiac support in our area. The Bay Area has been lucky to have such a longtime dedicated volunteer who helped build the foundation of today’s celiac and gluten sensitivity community. Thank you, Ellen!

When Ellen was diagnosed with celiac disease in 1985 at age 40, there was no local support and her gastroenterologist and dietitian had no information on how to manage a gluten-free diet. She made contact with a small group of older women in Sonoma County and joined them for a gluten-free lunch – her first celiac friends. Through them she met John Argue, who later helped found the Oakland group.

In May 1992, the Gluten Intolerance Group of North America (GIG) sponsored a meeting in Oakland at a local hospital for everyone on the national mailing list who lived in the Bay Area, and about 25 people attended. A month later, Ellen and John used the same list to hold a planning meeting to start a local support group, with about 18 people overflowing Ellen’s living room. One of the attendees arranged for Kaiser Permanente to host the meetings at no cost at their corporate headquarters in Oakland, which they did for many years. The new group called itself the Sprue Group of the Bay Area and often met several times a month.

The group enjoyed wonderful speakers, many of whom were invited so they would study up on celiac disease and become better informed themselves. They had a number of meetings with Donald D. Kasarda, the USDA celiac grain expert who has worked at the USDA Agricultural Research Service in Albany, CA. Ellen recalled, “Don introduced us to two staff members from the USDA who were experimenting with rice flour bread. They shared their systematic study of making rice flour bread with us. All the samples were dreadful, but we were impressed that the USDA was making the effort.” The University of California Cooperative Extension also sent rice-growing expert Jack Williams from Yuba to teach the group about rice.

Each meeting included a buffet, where they shared new commercial products, home baked goodies and recipes. Ellen said, “This was a great help in the early days because the available cookbooks for gluten-free cooking were primitive, and pretty horrible. Betty Hagman’s, The Gluten-free Gourmet came out in 1990 and was the first useful cookbook.” Cookbook author Jacqueline Mallorca was a member of the group and a great resource for cooking and baking. Joan Wade started up a small company called Sylvan Border Farm, and regularly provided the group with cakes, pies (from the cherries on her own trees), breads and all kinds of wonderful samples. They had an annual Christmas party attended by Santa Claus and Joan mass-produced Mickey Mouse pancakes.

Companies were beginning to produce gluten-free products; Ener-G Foods, Pamela’s Products, Authentic Foods and Amy’s Kitchen sent representatives and samples. Over the years, many other companies attended the meetings.

By 1993 they were mailing out meeting notices to 100 members, and that grew to 800 over time. Ellen and her children put out the mailings themselves the first few years and collected small annual dues to cover the cost of printing and postage. Martha Deutsch took over the role of membership secretary and printed out mailing labels. They later had volunteers who helped with mailings, but Martha did a lot of them herself. It was a big expensive job before the Internet allowed electronic communications.

The group hosted the Celiac Sprue Association’s national meeting in 1995, and later assisted with at least five annual celiac conferences run by volunteers at Stanford.

In 2006 the group moved its meetings to Kaiser Hospital in Oakland and affiliated with the Celiac Disease Foundation, which provided support, liability insurance and a website listing. The group hosted cookbook author Carol Fenster; dietitian Melinda Dennis; physicians Douglas Corley, Pauline Mysliwiec, Emily Nock, Elliot Schwartz, and Mala Setty; Gluten-Free Living magazine founder Ann Whelan; and celiac expert Dr. Peter Green.

According to Ellen, “Although we had many volunteers and active participants, there was not enough of a core group willing to organize more broadly.” Ellen and Melissa agree that the volunteer energy and interest in meetings declined as new resources became available online. Although there are a wide selection of resources for medical information and social media, sometimes personal interaction is essential; Melissa still enjoys answering questions for the newly diagnosed in one-on-one conversations or meetings, and organizes occasional events in coordination with the Celiac Community Foundation of Northern California. Ellen is retired from leadership, but still enjoys involvement in the community.