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REPORT FROM THE CSA CONFERENCE, OCTOBER 1998

By Janet Y. Rinehart, Past President, CSA/USA, Inc.

I imagine you celiacs are wondering about the recent CSA conference.  I
went to the CSA annual conference in Warwick, RI because I, as President
of CSA, needed to preside at the Governing Board meetings and I wanted
to learn even more about i Celiac Disease and Dermatitis Herpetiformis,
gluten-free products and baking tips. Also, I eagerly wanted to renew
acquaintances with the celiacs I have met over the 11 years I have been
attending CSA conferences. Yes, I had a very good time.

In honor of CSA=92s 20th birthday, I was proud to announce, on behalf of
Region 3 Director Rosalie Jalbert, former Region Director Joanne
Hameister and myself, the surprise presentation of a special
PROCLAMATION from the Governor of Rhode Island. Let me summarize
highlights of actions of the Governing Board. Regarding the generic new
member packet, the chairman Diane Paley reported that the final draft
was submitted to the Publications Committee and we were awaiting
corrections very soon. Copies were passed out to the Governing Board and
observers. The Board voted to first print the text in Connections, the
special publication for CSA leaders. The generic new member packet can
be tailored to chapters and resource units, with pages for local
information as to restaurants, health food stores, local products, etc.
Also, a new tri-fold brochure has been developed where blank sections
can be filled in by the local group to show local contacts, physician
advisors, meeting times and place, etc. I am grateful at the dedication
and commitment of the Thrust (Education) Committee to see this project
to fruition.

The Board voted to reinvestigate products and publish a new Cooperative
Gluten-Free Commercial Products Listing. We ask individuals and chapters
to cooperate by sending to the CSA office copies of new letters from
food manufacturers. Any new folks interested in helping with this
project, please contact new President Ruth Smith.

I reluctantly asked that the Celiac Disease/Diabetes project be
withdrawn from CSA back into the Houston chapter where it originated
because of frustration with the totally negative response from the
medical advisors to the proposed questionnaire and no forthcoming
suggestions or direction. A report will be submitted from the committee
along with resignations from the committee members. (The committee work
will continue in the Houston chapter and cooperate with other
groups/individuals.)

A committee will be organized to look into the current and future
governing structure of CSA. The Committee to Develop a Job Description
for Executive Director gave a written draft report. Leon also submitted
a report; the work of the committee will continue at Ruth=92s direction.

During discussions about finances, we were glad to learn that a line
item for financial consulting services was added to the new budget for
financial consulting services monthly and at the end of the fiscal year.

Regarding the Constitution/Bylaws, a section was revised (Article III,
Membership, Section 6. Expulsion and Removal) in order not to deny
anyone health information from CSA. Also, a new section was added to
deal with nonperformance of a leader=92s duties. Both sections were
approved at the Business Meeting.

The newly-elected officers are as follows:

President-Elect: Mary Schluckebier of Omaha NE;

Past President: Janet Rinehart of Houston, TX;

Recording Secretary: Ann Dodds-Frerichs of Boston, MA;

Treasurer/Comptroller: Marge Campbell of Omaha, NE;

Region 2 Director: Dean Cling of Kansas City, MO;

Region 2 Member-at-Large: Latisha Mae Thomas, Leavenworth, KS;

Region 4 Director: Daphne Ledford, Charlotte, NC;

Region 4 Member-at-Large: Glenda Keyes, West Columbia, SC;

Region 6 Director: Donna Beatty Loveland, CO;

Region 6 Member-at-Large: Margaret Eldorado, Tucson, AZ;

Membership Chairman: Carol Clarke, Blythewood, SC.

Future sites of the annual conference were decided: 1999: Atlanta; 2000:
Albuquerque; 2001: Minneapolis; 2002: Omaha.


Personally speaking...

When I was diagnosed, there were only two speciality food companies
catering to celiacs: Ener-G Foods and Dietary Specialties. I felt quite
fortunate then. However, now the number of vendors offering gluten-free
food has swelled to around 50. Eleven years ago I managed to cook
delicious recipes with Marion Wood=92s three cookbooks. Over the years
Bette Hagman, Carol Fenster, the Gluten-Free Baker Sandra Leonard, and a
number of others have have added to the quality and variety of
gluten-free cooking possibilities. I could not do without CSA=92s
Lifeline and Handbook, Jax Lowell=92s Against the Grain, the new
Sully=92s Living Without magazine, Ann Whelan=92s Gluten-Free Living,
the Celiac List on the Internet, Stoke=92s Pharmacy=92s Guide Through
the Medicine Cabinet, and the many chapter newsletters we diligently
publish. Also, I was invited to write my personal story in a new book
showing the many faces of CD, Coping with Celiac, The Great Masquerader,
edited by Aileen Bennett. You really don=92t know how fortunate we all
are to have all these resources available now. I personally thank our
food vendors, resource/cookbook writers, leaders, knowledgeable medical
community, and other supporters for helping us to cope with the world of
celiac disease.

I have enjoyed my two-year tenure at President of CSA. I have tried to
facilitate some of the ideas that celiacs have told me they need. When I
changed computers this month, I noticed I had answered over 1000
E-mails, mostly from celiacs. Fortunately, I do like to write letters. I
believe personal contact is the most satisfying way to help other
people, on both sides. It is very gratifying to hear hope in a
person=92s voice at the end of an orientation session when the person
called in despair or confusion. I thank you for the opportunity to serve
you. Please give your support to our new president, Ruth Smith of
Chicago.


GUBERNATORIAL PROCLAMATION

WHEREAS, Celiac Disease and its related syndrome, Dermatitis
Herpetiformis, are inherited autoimmune digestive disorders in which the
ingestion of gluten from wheat, barley, rye and oats damages the
absorptive surface of the small intestine; and,

WHEREAS, The only treatment for celiac Disease and Dermatitis
Herpetiformis is a gluten-free diet; and,

WHEREAS, Celiac Disease is under-diagnosed in the general population and
members of the celiac community support research to determine the extent
of the disease, which might be as low as one in 350; and,

WHEREAS, Members of the Celiac community, individually and through local
chapters, provide current information to individuals about the nature of
the disease, the gluten-free dit and vendors of gluten-free foods, and
encourage partnerships with medical professionals and dietitians who are
responsible for diagnosing Celiac Disease and Dermatitis Herpetiformis;
and,

WHEREAS, Celiac Sprue Association (Csa/USA) is a non-profit organization
dedicated to assisting people with Celiac Disease and Dermatitis
Herpetiformis and families with a member who has Celiac Disease; and

WHEREAS, The Governor of the State of Rhode Island acknowledges the
annual conference of Celiac Sprue Association/USA, Inc. at the Crowne
Plaza at the Crossings in Warwick, Rhode Island on October 30, 31 and
November 1;

NOW THEREFORE, I, LINCOLN ALMOND, GOVERNOR OF THE STATE OF RHODE ISLAND
AND PROVIDENCE PLANTATIONS, DO HEREBY PROCLAIM

October 30, 1998 as

Celiac Disease Awareness Day

in Rhode Island and encourage all of its citizens to join me in
welcoming its annual conference to the state.

Janet in Houston
Celiacs Helping Celiacs
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