HOUSTON CELIAC SUPPORT GROUP

Janet Y. Rinehart, Chairman                           281/679-7608

13722 Ashley Run                       E-mail: txjanet@swbell.net

Houston, TX 77077                           Celiacs Helping Celiacs

CSA/USA Chapter #25

Dear Celiac Friend,

I understand that you are interested in our support group. I am chairman of the Houston Celiac Support Group and Former President of CSA/USA, Inc. I want to familiarize you with our group for people with intolerances to wheat, barley, rye and oats (Celiac Disease and Dermatitis Herpetiformis), or just wheat allergy. We have a New Member Packet. Go to the section on this web page about Membership and our New Member Packet. Be sure to study the special Outline to guide you in the steps to start a gluten-free diet.

After years of suffering with a myriad of digestive complaints or multiple mysterious symptoms, you finally have a correct diagnosis of Celiac Disease – we hope. You are one of the lucky ones! There is treatment available in terms of a gluten-free diet, but you must commit to a lifelong attention to the dietary restrictions. The gluten-free diet is easier to navigate with assistance from a support group where leaders are dealing with the GF diet every day. Also, you will gain hints from other members and form life-long bonds. All members should aim for zero gluten and a healthy lifestyle.

You may or may not be surprised to learn that Celiac Disease is more common than most people or doctors think. In at-risk groups, the prevalence of CD is 1:22 in first-degree relatives; 1:39 in second-degree relatives; and 1:56 in symptomatic patients. The overall prevalence of CD in not-at-risk groups is 1:133 is now about 1%. You are not alone!

We are a resource to assist you in learning lifelong coping strategies and in sharing and helping other members. We are all in this together! Having lived with Celiac Disease for over 22 years and attended national conferences of CSA/USA and other celiac lectures, I want to help newly-diagnosed patients cope more easily with their dietary limitations and become "normal" again.

You will discover that you really can go out to eat in most restaurants and even travel. One of the chapters in our New Member Packet covers eating out with local restaurant investigations.

We have a number of physicians and dietitians on our Board. Please see homepage for listing. These professionals can answer questions for us about Celiac Disease, Dermatitis Herpetiformis (skin manifestation of CD, and the gluten-free diet. If you need a referral, please contact the Chairman.

For people who live out of the Houston area or out of state, we welcome your membership, but require you to first join CSA/USA and receive their LIFELINE newsletter and other material. We urge you to get involved with your celiac group with financial and active support. Our chapter Newsletter supplements LIFELINE, and if you are not receiving information from CSA, you are missing a great deal of valuable basic information. CSA publishes a Gluten-Free Product Listing, which is an important first tool in determining your menus. The more variety in your diet, the less deprived you will feel. With this product list in one hand and a good GF cookbook or two, you will be on a positive road to getting comfortable with the gluten-free diet.

CSA/USA sponsors an annual educational celiac conference each October. Visit their web site at www.csaceliacs.org and get the details. All of the annual conferences are wonderful for newly-diagnosed as well as "old-timer" celiacs. There are lectures on many subjects about CD and DH as well as the gluten-free diet. It is fun to compare hints with other celiacs with your same common bond. And to sit down for meals that are all gluten free and not to have to worry about diet concerns is also tremendous! I hope to see you there! All current members will receive registration material directly from CSA about this conference.

If you have access to the Internet, there is a national celiac discussion (free) list available with capability of answering questions between the subscribers.  Send a message to  listserv@listserv.icors.org containing this line: SUBSCRIBE CELIAC (YourFirstName YourLastName).  As a preview go to http://listserv.icors.org/archives/celiac.html  to see the peripheral files available in the Archives.  I suggest you subscribe in “Digest” form. Send a message to the server at listserv@listserv.icors.org and type the message “SET CELIAC DIGEST.”  To send a message to the group, just use Celiac@listserv.icors.org as the e-mail address. The best part of the list is the body of peripheral data files that will be explained when you subscribe.  To search the archives, go to: http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?A0=CELIAC

If you have access to the Internet, there is a celiac discussion (free) list available with capability of answering questions between the subscribers. The best part of the list is the body of peripheral data files that will be explained when you subscribe. Send a message to LISTSERV@MAELSTROM.STJOHNS.EDU, containing this line: SUBSCRIBE CELIAC (YourFirstName YourLastName). As a preview go to http://www.enabling.org/ia/celiac/index.html to see the peripheral files available.

In January 2006, a new law (Food Allergen Labeling and Consumer Protection Act of 2004) will come into effect that will mandate food products list the top 8 allergens in common terms on all food labels. The allergens are milk, eggs, peanuts, tree nuts, fish, shellfish, wheat and soy. By having food products list possible wheat (our biggest toxic offender) on labels, we people with wheat/gluten sensitivities will have an easier figuring out the gluten-free diet and an easier time grocery shopping to be able to have more confidence when you read labels.

The goals of our support group are to inform newly-diagnosed celiacs and DH'ers about the gluten-free diet, educate the medical and dietetic community about our needs, and research and pool information to help members cope with the gluten-free diet at home, at friends' or in restaurants. We want to help you learn more easily how to read labels, shop, cook, go out to eat and travel as safely as possible. Since gluten is hidden in so many food products, our best defense is education about the food products themselves and to thereby expand our food choices and enable us to plan with more variety in our balanced, healthful diet.

The Houston chapter encourages participation in HOUSTON R.O.C.K. (Raising Our Celiac Kids). This is a free opportunity to join with other families with celiac children to discuss special issues and cooperate on gluten-free parties. Families need both R.O.C.K. and the information our chapter and newsletter provide.

Houston support group meetings are generally held in September, November, February, and April, announced by our chapter newsletter, HOUSTON CELIAC PERSPECTIVE. Our members reside throughout the greater Houston area, and we move meetings around the city depending on the convenience of the speaker. A highlight of our meetings is the many additional handouts distributed at each meeting, so we encourage you to attend to learn more and meet new friends with the same special bond. I hope to see you at our next meeting! I hope this information is helpful to you, but I am very willing to answer any questions you may have. Also, after reviewing the material, please note what further needs you may have. I look forward to keeping in touch, and I wish you good luck with the gluten-free diet.

Sincerely,

Janet Y. Rinehart, Former President, CSA/USA, Inc. & CSA TX State Coordinator

281/679-7608 txjanet@swbell.net

 

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Updated 18Dec10