ABOUT OUR HOUSTON CHAPTER


THE HOUSTON CELIAC-SPRUE SUPPORT GROUP began in May of 1989 as a Resource Unit of CSA/USA, Inc. (a non-profit charity). About ten celiacs, local members of CSA/USA, met to send letters of introduction to gastroenterologists in the greater Houston area. We became chapter #25 of CSA/USA, Inc., in January of 1990 and organized and hosted a Regional Conference in March of 1990. As of February 2003, we have found over 460 celiacs or people with Dermatitis Herpetiformis. Far from being a rare disorder, as CD was erroneously thought in the past, the U.S. prevalence is now considered to be about 1 in 133 healthy individuals!

Ray A. Verm, M.D., of Baylor College of Medicine, became our first physician advisor. He had only seen several celiacs at that time, but he was willing to lend his name and expertise to our group. With all our referrals, he (as well as the other physician advisors) has seen so many more celiacs than he ever thought was possible by now!

The goals of our support group are to help members adjust to the gluten-free diet, exchange information, discuss important medical topics, provide support and fellowship, and educate the medical and dietetic communities about our needs. An extensive New Member Packet is available at charge with specific details about coping with the gluten-free diet. Our chapter newsletter, HOUSTON CELIAC PERSPECTIVE, announces our meetings (generally held in September, November, February and April); then gives information on new resources available, transcription notes of the previous program or conference lectures, product news investigated by our members and/or from the Internet Celiac Listserv,stories from celiacs, recipes from the previous meeting, restaurant investigations, and much more. We try to meet for GF luncheons at Houston area restaurants periodically.

Our chapter assists people with celiac disease, dermatitis herpetiformis, wheat and gluten sensitivities, or wheat allergy who need to follow a strict gluten-free diet.

Our chapter tries to give one-on-one assistance to newly-diagnosed celiacs and DH'ers (those with the related skin manifestation Dermatitis Herpetiformis). The first contact is usually with chairman Janet Rinehart for a new member orientation. Then a person may be referred to a neighbor member to get specific information about the availability of specialty gluten-free foods in his/her area. This restricted diet is much easier to handle with a buddy and the knowledge that we are not alone. We encourage members to join CSA/USA and receive the national newsletter LIFELINE. Our chapter material supplements that of CSA/USA.

In June 2001, a special adjunct group was formed in association with Danna Korn of California to service families with celiac children. Parents can attend R.O.C.K. (Raising Our Celiac Kids) dinner discussions and play groups to discuss solutions to children’s celiac issues in terms of dealing with school, church, and community food-related activities. Faye Sallee is the chairman of Houston R.O.C.K.

Programs have included local and national speakers concerning Follow-Up Treatment for Celiacs, Reproduction and Celiac Disease, Growth Retardation in Gastrointestinal Disorders, The Immunology of Celiac Disease, Osteoporosis and Estrogen Replacement Therapy, The Serologic Markers in Diagnosis of Celiac Disease; Flying Gluten Free; The Full Clinical Spectrum of Gluten Sensitivity; Nutrition Beyond the Gluten-Free Diet; Eating Out Workshop; Stress and Eating; etc., as well as discussions about basic issues for celiacs and DH'ers and baking hints with alternative flours, etc. We have also invited nationally recognized celiac cookbook authors in the past, such as Bette Hagman, Carol Fenster, and Aileen Bennett. Prometheus Laboratories sponsored a tour of Texas support groups, including Houston, by author Danna Korn, in February of 2003. National gluten-free vendors periodically send samples to taste. Attendees enjoy tasting gluten-free goodies after each meeting.

Celiac Disease is considered a chronic disease and emotional issues usually accompany it. People with the skin disorder Dermatitis Herpetiformis (one manifestation of Celiac-Sprue) also are also typically helped by a gluten-free diet and usually have some gut involvement. Feelings of anger (at the medical community for the length of time to come to a correct diagnosis), depression and isolation, exhaustion, relief (at a diagnosis), possible deprivation (at the loss of familiar products), and acceptance with action focused toward educating oneself and the family about the life-long diet restrictions may be stages for us toward emotional healing. However, most people with the correct diagnosis of Celiac Disease ultimately get better if they adhere strictly to the diet!

Founder and current Chairman of the Houston group is Janet Y. Rinehart ? also Former President of the national CSA/USA, Inc. Janet was the recipient of the Jefferson Award for public service (to celiacs) in May 2008.

Rain Lucas is co-chairman in charge of New Member Packets.

We are grateful to our professional advisors: Gastroenterologists Dr. Ian Sachs, Dr. John Stroehlein, Dr. Alberto O. Barroso; Dr. Douglas Fishman and Dr. Barbara S. Reid, pediatric gastroenterologists at Texas Children’s Hospital; Sylvia Hsu, MD, dermatologist, Baylor Clinic; Kay Lee, MD, family practice, and Margaret Richards Mauzé, Ph.D., pediatric psychologist. Dietitians on our board who are very familiar with the gluten-free diet are Anne Dubner, RD, Peggy Gumto, RD, Norma Terrazas, RD, Leslie Ramiriz, RD, Rya Clark, RD, Sara Olague, RD and Mary Beth George, RD.

We coordinate our activities with the assistance of our Board members, who consult together on programs, and activities and policies. Thank you for visiting our chapter webpage, developed by Chairman Janet Rinehart and webmaster John Longo.

We welcome new celiacs, DH’ers and those with wheat/gluten sensitivity to our celiac support group! --

CELIACS HELPING CELIACS --


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Updated 5May13