FW: SF Bay Area Celiac News - September

[Guest guest]

Here is the most recent Newsletter. Sorry to be so late putting it on the

list, but things were a bit hectic last week and it slipped my mind.

The Santa Cruz meeting is coming up next Saturday (the 18th). I think it

will be a great meeting with Goldberg talking about the newest, most

absorbable, supplements. I have samples of Low Carb bars and cookies from

Sunstart Bakery to share at the meeting.

Registration is now open for the 5th Annual Stanford Celiac Conference on

Saturday, October 30, from 8:30am-5pm. For more details and to register, go

to: http://celiacsupport.stanford.edu

Pam Newbury

Santa Cruz Celiac Support Group

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

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

Sent: Wednesday, September 01, 2004 4:46 PM

Martha Deutsch

Subject: SF Bay Area Celiac News - September

SAN FRANCISCO BAY AREA NEWS....September 2004

OAKLAND

Contact: Ellen Switkes

510-655-0215 (evenings), ellen.switkes@...

***PLEASE NOTE CHANGE IN DATE TO SEPT 11***

Our first meeting of the year will be on Saturday, September 11,

from 10:30am to 12:30pm, 1950 lin Street in Oakland.

This is the Kaiser Permanente Corporate Headquarters, not

the hospital. Please bring a gluten free brunch item with recipe

or ingredients list. We will hear news from the NIH Consensus

Conference this summer, from other meetings, and talk about

some of the basics of gluten free living such as diet, eating out,

travelling. Bring all your questions and ideas. Call for directions.

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SANTA CRUZ

Contact: Pam Newbury

831-423-6904, pknewbury@...

The Santa Cruz Group will meet Saturday, September 18, 11am,

meeting room 1 at Dominican Hospital, 1555 Soquel Drive,

Santa Cruz. We have invited Goldberg to talk about

nutritional support and supplements for celiacs, with time for

questions afterward. has been a nutritional consultant

for 25 years and has published over 200 articles on food and

nutrition. He has assisted in nutritional and herbal research

at the University of California in San Francisco. is a

nutritional consultant at New Leaf Market in Felton; he is

currently working on his PhD in Holistic Nutrition.

The meeting will conclude with a gluten-free potluck lunch, so

please bring a gluten-free lunch item (and a list of ingredients

or the recipe) to share (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.

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BAY AREA ROCK

Contact: Fowell Velez

650-216-6405, kelly.velez@...

Our next BBQ will be on Sunday, September 26th from

11am to 3pm. Susi Khosla was kind enough to reserve

Rinconada Park, 777 Embarcadero Road in Palo Alto,

the same site as last time (at the Sequoia site behind

the Girl Scout House). Please bring your own grillables,

drinks, paper goods and a dish to share (list ingredients).

You can also bring toys, frisbees, badminton, etc. I will

send out directions when we get closer to the date.

We look forward to welcoming new members. This

is for ALL members and their families and anyone new

you think would enjoy the gathering.

Please RSVP to me by e-mail (note new e-mail address)

so that we have an idea of how many to expect.

Note from celiac baker Mike Groff. . .

I'd be happy to take bread orders from anyone for that day.

I've also been making pizza crusts that are really good and

everyone seems to enjoy them. Both the white and the

" wheat " bread sell for $3.00 each and the 10 " pizza crusts

are $3.00 each also. I will try to bring some other goodies

that we've been working on and, as always, we'd love to

get your feedback. To place an order, please send an

e-mail to: icaneatthat@...

(If you place an order, please also remember to bring a

cooler with ice to the picnic for storage.)

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STANFORD

Contact: Rohlfs

650-725-4771, kellyr@...

The 5th Annual Stanford Celiac Conference is scheduled for

Saturday, October 30, from 8:30am-5pm. The conference is

sponsored by the Department of Pediatrics, Stanford University

School of Medicine; Sibley, M.D., Ph.D., Faculty Sponsor.

It is endorsed by the Celiac Disease Foundation (CDF) and

Gluten Intolerance Group of North America (GIG), and

organized by volunteers.

Program information and a registration form can be found

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

You can register online using a credit card, or you can print

out the form and send it by regular mail (note deadline Oct 20).

Please note that here will not be a blood draw this year.

For adults there will be a beer tasting available, and

trick-or-treating for kids (but without costumes).

For more information or questions please contact

Janis Foss at 650-215-1222, e-mail jfoss@....

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CONTACTS FOR OTHER SUPPORT GROUPS

Napa: Marie Dell'Isola, 707-255-4027

(no meetings planned but welcomes phone calls)

SF ROCK: Palmer, 415-647-7669, palmer@...

East Bay ROCK: Dana Sylvester-Doscher, 925-648-3217,

ddoscher11@...

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OTHER NEWS:

From the American Celiac Task Force:

**House of Representatives Passes Allergen Labeling Bill **

**President Bush Signs Allergen Labeling Bill**

On July 20 the U.S. House of Representatives, under the leadership

of Rep. Nita Lowey (D-NY), passed the Food Allergen Labeling

and Consumer Protection Act (S. 741).

On August 2, President Bush signed the Food Allergen Labeling

and Consumer Protection Act (FALCPA / S. 741) into law.

This landmark legislation will require the top 8 food allergens

[milk, eggs, peanuts, tree nuts, fish, shellfish, wheat and soy]

to be listed on food labels by January 1, 2006.

The bill also requires the FDA to develop rules for the use of

the term 'gluten-free' on product labels by January 2008.

Every call, letter, meeting, petition, and crayoned picture paid off.

Thanks to you -- the celiac community -- we beat incredible odds

and got this bill passed.

The 'One Voice' of the Celiac Community has been heard !

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Celiac news from Rohlfs:

EDUCATIONAL CAMPAIGN - New Physician Materials

The Children's Digestive Health and Nutrition Foundation (CDHNF)

with the North American Society for Pediatric Gastroenterology,

Hepatology and Nutrition (NASPGHAN) announced the launch

of a new educational campaign on Celiac Disease, one of the most

common genetic digestive conditions possibly affecting as many

as three million Americans (up to 1 percent). Since it has been proven

that early detection and intervention can prevent long-term

consequences, CDHNF and NASPGHAN are focusing on

accurate and timely diagnosis and treatment in children.

" We plan to raise greater awareness about celiac disease and

urge physicians to add it to their screening checklist, " said Alessio

Fasano M.D., chair of the CDHNF Celiac Disease Campaign, NIH

Consensus speakerand director of the Mucosal Biology Research

Center for the University of land School of Medicine Center

for Celiac Research. " We now have the information we need on how

to diagnose and treat this disease and we need to start applying

that knowledge into practice. "

To help spread the word, the campaign will include physician materials

such as a celiac disease physician CME slide set, a nationwide Grand

Rounds program, and a soon-to-be released NASPGHAN " Clinical

Practice Guideline on the Evaluation and Management of Celiac Disease

in Children, " in the fall of 2004. In addition, a new web site

http://www.celiachealth.org will provide resources for the medical

professional community and the general public.

They have put together a comprehensive slide set (Acrobat and

PowerPoint) available on their website http://www.celiacfacts.org

Although somewhat specific for pediatricians and pediatric

gastroenterologists, the material is applicable to all stages and

ages of celiac disease. Topics include: Definition, Associated

Conditions, Clinical Manifestations and Complications, Diagnosis,

Epidemiology, Pathogenesis, Prevention, and Treatment.

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The following summary of the NIH Consensus Conference

on Celiac Disease can be found in the Journal of the American

Medical Association, August 25 issue:

(Mike Mitka , JAMA. 2004;292:913-914)

Higher Profile Needed for Celiac Disease

Underdiagnosis s Treatment Delays, Says Panel ...

Celiac disease can remain undiagnosed for years, hiding in the

shadows of symptoms that mimic other conditions. But now

physicians and researchers are shining a spotlight on the disease

that should lead to quicker diagnosis and appropriate treatment.

A consensus panel convened by the National Institutes of Health

recently announced recommendations for appropriate diagnosis

and management of celiac disease. The focus is timely because

celiac disease, once believed to be a rare condition, is now

considered underdiagnosed and is estimated to affect between

0.5% and 1% (up to 3 million individuals) of the US population.

These new numbers are 10 times higher than previous estimates.

The disease is an immune-mediated disorder of either childhood or

adult life. Its chief characteristic is chronic inflammation of the small

intestinal mucosa that can cause atrophy of intestinal villi, malabsorption,

and other clinical manifestations. Symptoms include diarrhea, abdominal

cramping, pain, and distention-all common complaints that can lead

physicians to think about other causes before considering celiac

disease.

But the disease may also have other effects, including persistent

elevations of transaminases, short stature, delayed puberty,

iron-deficiency anemia, recurrent fetal loss, and infertility. This

wide range of symptoms can lead physicians down many dead

ends while considering other diseases. " The single most important

step in diagnosing the disease is to first consider the disorder, "

said Irene J. Check, PhD, a consensus panel member and professor

of pathology at the Feinberg School of Medicine, Northwestern

University, Chicago, Ill.

Diagnosis takes an average of 10 years, said O. Elson, MD, panel

and conference chairperson. For patients, this delay can mean years of

discomfort and worry. " We all have to make a better effort, " said Elson,

who is also professor of medicine and microbiology, Department of

Medicine, University of Alabama at Birmingham.

The delay is particularly frustrating because treatment of celiac disease

is straightforward, involving just a change in diet. In individuals with

the disease, glutens-dietary proteins present in wheat, barley, and rye-

activate an abnormal mucosal immune response and induce tissue

damage. Most individuals with celiac disease experience remission

after excluding gluten from their diet.

" So we have a very effective treatment-gluten-free diet-but if physicians

don't recognize when to test for the disease, patients are going to suffer

needlessly, " Elson said. A definitive diagnosis of celiac disease usually

requires a combination of clinical findings and laboratory tests, which

must be done while the patient is on a gluten-containing diet.

The first step, said the consensus panel, is serological testing. The

best tests are the antihuman tissue transglutaminase IgA and endomysial

antibody immunofluorescence IgA, both of which seem to have

equivalent diagnostic accuracy with high sensitivity and specificity,

the panel said. Antigliadin antibody tests are no longer routinely

recommended because of their lower sensitivity and specificity.

The panel also noted, however, that serological testing for celiac

disease may be less useful in young children because the

disease's antibodies may not be present.

If patients have a positive serological test for celiac disease, then

the next step is to obtain biopsy specimens of the proximal small

bowel. Multiple biopsies should be obtained because the histological

changes may be focal. Endoscopic evaluation without biopsy is

inadequate to confirm or exclude a diagnosis.

Positive serological testing and biopsy are enough for a presumptive

diagnosis of celiac disease. Definitive diagnosis is then confirmed

when symptoms resolve with a gluten-free diet, the panel said.

The panel also alerted physicians to various populations that are

at higher risk of having celiac disease. Among first-degree relatives

of individuals with biopsy-proven celiac disease, the prevalence is

between 4% and 12%. Second-degree relatives also appear to have

increased risk, although the panel did not offer any percentages.

Other individuals with elevated risk are those with type 1 diabetes

mellitus (3% to 8% prevalence) and those with Down syndrome

(5% to 12% prevalence). Celiac disease is also associated with

syndrome, syndrome, selective IgA deficiency,

and autoimmune disorders, the panel noted.

For patients, the panel offered an acronym that underscores 6

elements essential to treating celiac disease once it is diagnosed:

C - Consultation with a skilled dietitian

E - Education about the disease

L - Lifelong adherence to a gluten-free diet

I - Identification and treatment of nutritional deficiencies

A - Access to an advocacy group

C - Continuous long-term follow-up

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Note to Bay Area Celiacs:

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

address, phone number and e-mail address to your local

support group leader or 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.