FW: SF BAY AREA CELIAC NEWS..NOV 2004

[Guest guest]

Here's the latest newsletter. Note that we will be meeting in Santa Cruz

tomorrow.

Be sure to read through the whole message. Lots of info on the new Celiac

Sprue Management Clinic to open at Stanford as well as a new gluten-free

bakery in SF.

Pam Newbury

Santa Cruz Celiac Support Group

831-423-6904

pknewbury@...

-----Original Message-----

From: Deutsch [mailto:deutschm@...]

Sent: Monday, November 08, 2004 10:04 PM

dondeutsch@...

Subject: SF BAY AREA CELIAC NEWS..NOV 2004

SAN FRANCISCO BAY AREA CELIAC NEWS

NOVEMBER 2004

November Meetings:

SANTA CRUZ

The Santa Cruz Celiac Support Group will meet on Saturday

Nov 13, at 11AM, in meeting room 1 at Dominican Hospital,

1555 Soquel Drive, Santa Cruz.

Pam Newbury will report on the Stanford Celiac Conference

and we can discuss new research on Celiac Disease.

Other conference attendees are welcome to come and

share their impressions with those who could not attend.

The meeting will conclude with a gluten free potluck lunch,

so please bring a gluten free lunch item to share , with a list

of ingredients or the recipe. (This is optional for those who

are very ill or unfamiliar with the gluten free diet.) The

meeting is open to all who are interested in this topic.

For more information call Pam Newbury at 831-423-6904,

or e-mail pknewbury@....

____________________________________________

BAY AREA ROCK

Susi Khosla has kindly reserved Rinconada Park in Palo Alto

on Sunday, Nov 14 from 11AM-3PM, weather permitting.

We will be meeting again behind the Girl Scout house by the

playground. It is easiest to park in the Junior Museum parking

lot. Bring a gluten free dish to share and also bring something

to grill (if you want) for your family. It is helpful if you can

bring a card with the ingredients on it for the shared dish as

we have other allergies in the group. And recipes are nice too!

Please RSVP to Velez at 650-216-6405

or e-mail kelly.velez@....

______________________________________________

SF ROCK

Contact Palmer, 415-647-7669, palmer@...

A November meeting is planned.

______________________________________________

December Meeting:

OAKLAND

Our Christmas meeting will be Saturday, December 4 from

10:30AM to 12:30PM, 1950 lin Street in Oakland. This

is the Kaiser Permanente Corporate Headquarters, not the

hospital. Joan Wade of Sylvan Border Farms has promised

home made cherry pie (she grows cherries too). Santa Claus

will come at 11:45, so children of all ages are welcome. Parents

should bring a small gift for Santa to share with your child.

Let's have a cookie exchange at this meeting and focus

discussion on making and buying cookie, cakes and desserts.

Please bring g-f cookies or other desserts to share. Please

either bring copies of the recipe or the box or package of

commercial cookies. We can sample a variety of goodies

we might want to buy ourselves. We've all tried Pamela's

delicious cookies, so please bring something else. There

are lots of new products on the market, plus using g-f flour

to bake your traditional favorites often works great. Also

bring your questions and suggestions about g-f baking.

Call for directions. Contact: Ellen Switkes at 510-655-0215

(evenings/weekends), ellen.switkes@....

_____________________________________________

Other support groups

STANFORD

Contact Rohlfs, 650-725-4771,

kellyr@...

EAST BAY ROCK

Contact Dana Sylvester-Doscher, 925-648-3217,

ddoscher11@...

Dana has been talking with Elaine of the Family

Foundation about the possibility of offering a Gluten Free

Kids' camp this coming summer at their Livermore Arroyo Vista

campsite. This would be the first ROCK camp for celiac kids

in the Bay Area, the closest being in the Seattle area. She will

keep us informed.

NAPA

Contact Marie Dell'Isola, 707-255-4027

(no meetings planned but welcomes phone calls)

============================================

STANFORD CELIAC CONFERENCE REPORT

By Rohlfs

============================================

The 5th Annual Stanford Celiac Conference, organized by

volunteers from the Bay Area Celiac Support Groups, was

a huge success. There were 500 attendees, 50 vendors

including new gluten free bakeries in the Bay Area, great

speakers, a fun program for kids and teens, BEER tasting,

and a huge assortment of freshly baked goods. Many

thanks to all the volunteers who made it possible!

For those who missed the conference, the vendor list

and a few of the speaker presentations can be found

on our website http://celiacsupport.stanford.edu

(click on 2004 conference).

Also on that site you can also download a pdf file of

Draeger's stores gluten free list (they carry a lot of products).

The list was handed out at the conference but contains

one error - the Siljans crispbread rye is not gluten free.

The BIG news from the conference is the opening of the

Celiac Sprue Management Clinic at Stanford Hospital in

January 2005.

The clinic will be staffed by Dr. Gray, Dr. Gail Pyle

(Dr. Pyle is also a Celiac), and a dietician. The purpose

of the clinic is to provide long-term medical and nutritional

support for adult Celiacs, and will include

(1) close guidance for newly-diagnosed Celiacs to

help them return to health;

(2) yearly follow-up examinations of Celiacs who are doing

well in order to assess disease activity and screen for

potential complications such as nutritional deficiencies;

(3) providing help to Celiacs who are having problems

managing the disease.

Information on how to schedule an appointment will be

available starting December 1 at www.stanfordhospital.com

(click on " Clinics and Medical Services " ) or at

www.celiacsprue.org.

Stanford accepts several insurance plans, including many

PPOs, MediCal, and Medicare. Please call 650-724-1460 for

any insurance questions.

I know I'm not alone in receiving little to no follow-up care

after diagnosis. After giving birth to my son 12 years ago

I developed chronic diarrhea and within two months was

hospitalized for problems related to malnutrition. My

problems continued and my health declined to the point

I knew I would be dead before my son's first birthday. I

was finally diagnosed when my son was seven months

old and I was told by my doctor, " Sorry we don't have

the diet. " I left the doctor's office underweight, malnourished,

feeling abandoned by the medical community. I was on

my own to figure out the diet that would save my life. It

was several years later that I learned I also needed to take

vitamin and mineral supplements, and to have my bone

density checked (yes, I have osteopenia). Someone as

sick as I was should not be left alone with the disease

and with no follow-up care.

With the opening of the Celiac Sprue Management Clinic,

celiacs will finally have some help in recoveryand in

long-term management of the disease. In order to open

this much needed clinic, Stanford Hospital required a

promise of funding for the costs not covered by insurance.

These costs are estimated at $25,000 next year. Recognizing

how such a clinic could improve the lives of celiacs in the

Bay Area, the Celiac Sprue Research Foundation has

agreed to bear those costs. Now the Research Foundation

needs to raise those funds and has asked our local support

group to help. I am asking the celiacs of the Bay Area to

support the clinic with a tax-deductible donation. Only with

your help will the Celiac Sprue Management Clinic exist.

Please consider giving.

Levels of support include:

Benefactor: $5,000

Sponsor: $1,000

Associate: $500

Friend: $100

Donor: $50

Checks should be payable to the Celiac Sprue Research Foundation

and mailed to P.O. Box 61193, Palo Alto, CA 94306-1193, with a note

that the donation is for the clinic, or donations can be made via

credit card at http://www.celiacsprue.org. The donors will be listed

on the website and the total amount collected and amount paid to

Stanford Hospital will be updated each month, and also sent out

with this notice.

If you have any questions, please send Rohlfs an e-mail at

kellyr@... or call in the evenings at

650-625-1708.

_______________________________________________

OTHER NEWS....

Announcing a new gluten free bakery in the Bay Area!

Crave Bakery www.cravebakery.org

415-826-7187 info@...

Cameo LeBrun, Founder

These products are fantastic. Imagine walking into Whole Foods

and buying a little frosted chocolate cake baked gluten free! Yes,

we can finally do that. And buy delicious cookies and brownies too.

They also make special order birthday cakes and are available for

parties and catered events!

Crave is a wholesale bakery that bakes without wheat, gluten or

milk. Products include cakes, brownies, cookies and muffins.

They use organic brown rice flour as their base and other

high-quality, organic ingredients and free-range eggs to create

homemade tasting baked goods. Their products can be found

at the following locations:

San Francisco: Fenway Market

Harvest Market (Market St. and 8th St.)

Real Food Co. (Polk St. and Fillmore St.)

Rainbow Grocery

The Good Life (Cortland Ave.)

Whole Foods (California St. and 4th St.)

East Bay

Berkeley: Berkeley Bowl,

Elephant Pharmacy,

Whole Foods

Berkeley Farmers Market -Tuesdays

(Winter 2-6, Summer 2-7)

Concord: Harvest House

Walnut Creek: Whole Foods

South Bay

: Whole Foods

Los Gatos: Whole Foods

Palo Alto: Whole Foods

San Mateo: Whole Foods

______________________________________________

DOCUMENTARY ON CELIAC DISEASE WILL AIR

ON NATIONAL PUBLIC RADIO DECEMBER 18

The show is called " Gut Reaction " and it tells the story

of a life with CD (the pain, discomfort, confusion, frustration,

embarrassment, discovery and recovery) through the voices

of Celiacs. Produced by of rlpaulproductions, LLC,

the program willair as part of the public radio documentary

series " Soundprint. "

In San Francisco it will air on KQED on Saturday, December 18,

at 2PM. It will be on other NPR stations around the country at

varying times Friday-Sunday, Dec. 17-19. Both Rohlfs and

Pam Newbury have heard the program and recommend it to all.

If you are not in the KQED area, check with your local NPR

station to find out the correct time.

______________________________________________

Note to Bay Area Celiacs:

To subscribe or report address changes, please send your name,

address, phone number and e-mail address to Martha Deutsch,

341 Central Ave, Half Moon Bay 94019, 650-726-9562,

deutschm@....

This list is confidential and will be used only to keep you informed

of local celiac activities and important celiac concerns the group

leaders wish to share. Even if you do not participate in a group,

all of the leaders are happy to answer questions and refer you to

other resources.