FW: SF Bay Area Celiac News...Feb 2005

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-----Original Message-----From: Deutsch [mailto:deutschm@...]Sent: Thursday, February 10, 2005 11:04 AMMartha DeutschSubject: SF Bay Area Celiac News...Feb 2005SF BAY AREA CELIAC NEWS....FEBRUARY 2005Happy New Year to all, and welcome to all the new people on our list! Be sure to check out the web site Rohlfs maintains for us: http://celiacsupport.stanford.edu/ is posting all of the information we send in this mailing and has recently added more information on celiac-friendly restaurants.SF Bay Area meetings and events... SF ROCK Contact Palmer415-647-7669, palmer@... The San Francisco ROCK group will be meeting for dinner on Wednesday, February 23 from 7 to 9PM at Chenery Park restaurant in the Glen Park neighborhood of San Francisco. The address is 683 Chenery Street, telephone 415-337-8537. Please email by February 22 if you are planning to attend so she can make an accurate reservation. And please bring your agendas so we can plan ahead for upcoming meetings and events.---------------------------------------------------------------------------------------OAKLANDContact Ellen Switkes510-655-0215 (evenings/weekends), ellen.switkes@... The Oakland group will meet on Saturday, February 26 from 10:30am to 12:30pm at 1950 lin Street, Oakland (Kaiser Permanente Corporate Headquarters, not the hospital). Speaker will be Joyce Selkow, an Oakland nutritionist who will talk about "Good Nutrition for Celiacs: Eating Right after Diagnosis." If you have questions about nutrition in advance of the meeting, please send them to ellen.switkes@... so that Joyce can come prepared to address some of our questions. Please bring a gluten free brunch item to share with your recipe or ingredient list. Call Ellen with questions or for directions. Save April 9, May 21, June 25 for the next Oakland meetings. --------------------------------------------------------------------------------STANFORDContact Rohlfs650-725-4771, kellyr@... Our next event is breakfast at First Watch restaurant in San Mateoon Saturday, March 5 at 8:30am. First Watch has a gluten free ordering guide so we can each order our own breakfast and pay individually. Please bring a gluten free baked good to share. The address is 201 Second Ave. and their telephone is 650-342-2356 if you need directions. Please RSVP to Rohlfs if you plan to attend: kellyr@... or cell phone 650-868-2315.It's time to start planning the annual walk-a-thon in May at Stanford. If you want to help make it a fun day and raise lots of money for celiac research, please consider volunteering. Contact if you can help.Celiac Sprue Management Clinic at Stanford Hospital news...The lunch at Maggiano's Little Italy in San was fantastic. Through the bake sale and raffle we raised $720 for the Clinic. Maggiano's dedicated one kitchen to our meal to ensure all was GF. They have told us they will be happy to make special gluten free meals for celiacs, whether a large group or an individual. The restaurant normally stocks GF pasta (Tinkyada Pasta Joy brand), but they encourage you to call ahead for special requests. They have several banquet rooms if you want to plan a special event. (We will plan another lunch there this year.) Thanks to the following people for their generous contributions to the event: Mike Groff of "I Can Eat That" Bakery for supplying the mouth watering breads, focaccia, rolls and pizza crust; Sue Hersom for baking up delicious treats and giving us tips on GF products; Joan Wade of Sylvan Border Farms for donating flour mixes for baking and great food for the raffle; Global Blends in Mountain View for donating a gift basket of coffee, tea and a travel mug; Pam Ramsaur for donating a case of GF beer for the raffle; and Ed Bloom for bringing colorful helium balloons. To date we've raised $2,474 towards our goal of $25,000 for the Celiac Sprue Management Clinic at Stanford Hospital. Thank you to the attendees at the Maggiano's lunch and an anonymous donor for helping to support the clinic. For more information on the clinic, or to make a donation to support the clinic online via PayPal, see http://www.celiacsprue.org/celiacclinic.html. Checks can also be mailed to Celiac Sprue Research Foundation, P.O. Box 61193, Palo Alto, CA 94306-1193. (Reminder: for Clinic appointments telephone 650-723-6961.)-------------------------------------------------------------------------------EAST BAY ROCK Contact Dana Sylvester-Doscher925-648-3217, ddoscher11@... Dana is working with Elayne of the Family Foundationon organizing a ROCK GLUTEN FREE KIDS' CAMP this coming summer at their Livermore Arroyo Vista campsite. She has confirmed a date for the camp: AUGUST 7-11.Dana needs your help! The paper work is being finalized but she is looking for help with marketing, recruitment, dietitian, mailings, camp counselors. If you can offer expertise or just time and support, please contact Dana. ----------------------------------------------------------------------------- SANTA CRUZContact Pam Newbury831-423-6904, pknewbury@...No event planned at this time.--------------------------------------------------------------------------BAY AREA ROCKContact Velez at 650-216-6405,kelly.velez@...The next event will be when the weather is warm enough to meet outside. Reminder: the Bay Area ROCK group does not maintain a separate mailing list. If you want to join and get information about this group, you need to join the online group by sending email to bayareaceliacROCK-subscribe The web page for the group is: bayareaceliacROCK/?yguid=149813774--------------------------------------------------------------------------------NAPAContact Marie Dell'Isola, 707-255-4027(no meetings planned but welcomes phone calls)--------------------------------------------------------------------------------FUNDRAISING EVENT Team GlutenFree Arizona was a HUGE success! Tens of thousands of dollars were raised on behalf of the Celiac Disease Foundation, Celiac Sprue Research Foundation, University of land and Celiac camp scholarships. We had 20 runners/walkers from across he nation participate in Phoenix. We dined on gluten free pasta and passed out TONS of greatdoor prizes at our pre-race dinner! Our next event is July 31, 2005 in SAN FRANCISCO! Please join us for the Runner's World 5K/half marathon/full marathon. All levels of athletes are welcome - runners AND walkers!! For more information, please e-mail Owen at teamglutenfree@....-------------------------------------------------------------------------------- DIETITIANS/NUTRITIONISTS FOR CELIACSThe Celiac Sprue Research Foundation has hired Kearney, a Stanford dietician of many years, as the dietician for the Celiac Sprue Management Clinic. She is very excited about working with us and will start seeing patients within the next couple of weeks. The clinic's appointment number is 650-723-6961. Other Bay Area dietitians/nutritionists who have a special interest in celiac disease include:East BaySuzi Saroukhanians 510-388-3518, celiac_dietitian@...Walnut Creek/East Bay area (Private practice)Gail Seche, MMSc, RD - Pediatric DietitianChildren's Hospital and Research Center747 52nd Street, Oakland, CA 94609510-428-3885 ext 4401, gseche@...Joyce Selkow, MS, RD 7011 Homewood Dr. Oakland, CA 94611 510-339-1862, joyceselkow@... South BayBarbara Dodson MSRDDept. of Pediatric GastroenterologyKaiser Permanente, Outpatient Nutrition Clinic 900 Kiely Blvd., Santa Clara, CASan Francisco Britvan, RD Kaiser Permanente San Francisco 415-833-3073 (direct), 415-722-2616 (mobile)415-833-4877 (fax)Sees patients on a referral basis-------------------------------------------------------------------------CELIAC FAMILY STUDY at UC-IrvineDoes your family struggle with Celiac Disease or Dermatitis Herpetiformis? Your participation could help researchers identify genes for this condition.Investigators at the University of California, Irvine are seeking families with at least two individuals who have been diagnosed with celiac sprue or dermatitis herpetiformis to participate in a genetic study of celiac disease. The study is designed to identify factors associated with celiac disease and to find genes that may predispose individuals and their relatives to develop this condition. The discovery of such genes may one day lead to better diagnosis, treatment, and possibly even prevention of celiac disease. Families eligible to participate in this celiac study must have at least two relatives (with the exception of simple parent-child pairs) diagnosed with celiac sprue or dermatitis herpetiformis by at least one of the following methods: a small intestinal biopsy, a positive transglutaminase (tTG) antibody test, a positive endomysial (EMA) antibody test, or a positive skin biopsy (for dermatitis herpetiformis). After meeting the eligibility criteria to enroll a family, all first degree relatives of those who have been diagnosed with celiac sprue or dermatitis herpetiformis will be invited to participate in the study. These participants will receive a free antibody test for screening of celiac disease if they are not currently on a gluten free diet and have not recently been tested for celiac sprue.If you are interested in participating, or have questions about the study, please contact am Mousavi, University of California, Irvine: 949-824-5603, toll-free 866-356-9962, or email mmousavi@...--------------------------------------------------------------------------------------CONCERNING OATS(from the February 2 newsletter of the Celiac Disease Center at Columbia University, New York City) We advise those with celiac disease to consider adding oats to their diet. Oats are gluten free; they add satiety, nutrient value, fiber and diversity to the gluten-free diet. Multiple studies show that the majority of patients with celiac disease tolerate oats. These studies are from Europe as well as the United States. The study from the United States examined the effect of adding commercially available oats to the gluten-free diet in children who had recently been diagnosed with celiac disease. Over a six month period, those consuming oats did just as well as those who did not. Oats are a source of fiber. Increasing fiber in the diet has many benefits from lowering cholesterol, helping maintain regular bowel function to added satiety. However, in adding fiber to the diet it is important to add the fiber slowly. Increasing the fiber content of the diet all at once can lead to bloating, increased flatulence and abdominal cramps. These side effects can be avoided by adding the fiber (oats) gradually, giving the body a chance to adjust. A reasonable approach is to start by using a 1/4 portion of oats for a few days, then increase to 1/2, then to a full portion. There is a potential problem with contamination from other grains. Oats are often grown on the same fields or milled in mills that grow or mill other grains. Therefore although the oat itself may be safe it may have gotten contaminated in the processing. We recommend using oats from a facility that processes only oats and no other grains. We recommend McCann's Irish Oats. The company states that their product is produced in factories dedicated to oats. They recognize that some of the batches have shown contamination with gluten. The company is closing down the one factory from which those batches came. Another issue is that patients may have a sensitivity to the protein portion of oats and develop intestinal inflammation and villous atrophy. This is very rare. We do recommend the use of oats only after you have stabilized on the gluten-free diet. This would typically involve blood tests for celiac antibodies becoming negative, and may involve a follow-up biopsy. While on the diet, patients should be monitored with celiac serologic-blood tests. If symptoms occur one should be appropriately assessed to determine if the problem is due to the added fiber or a reaction to the protein in oats and aggravation of celiac disease. -------------------------------------------------------------------------------Report on Global Blends Coffeehouse in Mountain View....by Sue HersomGlobal Blends is a wonderful coffee house/cafe haven whereany celiac can feel comfortable having a delicious muffin with coffee or a tantalizing sandwich for lunch. I had heard such great things about the place, so a fellow celiac and I decided to have lunch there. Patsy is the owner of the cafe and also a celiac, so she has schooled her help quite well in the specialized art of making celiac food safe for us to eat. When we saw "gluten free breads" listed up on the board, we felt so "mainstream"that we even jumped up and down a bit with excitement in front of the counter! We each ordered two of her "famous" blueberry muffins, a slice of spinach quiche and a 3-cheese sandwich with tomatoes grilled on a dedicated grill. She also serves gluten free soups, but we figured we had more than enough to eat at that point! We sat in big overstuffed chairs next to the window and enjoyed our lunch. It was wonderful, relaxing and liberating! The bread Patsy uses in her GF sandwiches is made by Groff of "I Can Eat That!". She stocks a variety of his frozen bread products, but call ahead to make sure the kinds you want are in stock. I just wanted to share our great experience with other celiacs because I know how much it means to go into a place and order food without asking one single question! (Global Blends is located at 650 Castro Streetin Mountain View, 650-254-1110.)----------------------------------------------------------------------------------Notes to Bay Area CeliacsThis news is intended to include reports from all of our support group leaders, but on occasion other news of importance will beadded. While we expect that all of us will keep up with national celiac news (and recipes) through the internet and our membershipsin the various celiac organizations, if anyone has information ofinterest to celiacs in the Bay Area, please let us know.Also if any of you want to plan an event, such as an informal gathering in a restaurant, we are happy to announce it! Because we are scattered over a wide area and the scheduled meetings may not be easy for some to attend, we need to find ways to get together, meet new celiacs, and share our celiac concernsand discoveries. Another issue: we still have just over 200 people on our list who do not use email. In order to save money on the cost of mailing, we are hoping to establish the Bay Area Celiacs as a non-profit group, and do bulk mailings. This may require mailing from the Palo Alto post office, and ideally we would find a volunteer (better, a group of volunteers) near Palo Alto to handle the copying and mailing activity. If you would like to help, please contact Martha Deutsch. This list is confidential and will be used only to keep you informed of local celiac activities and important celiac concerns. To subscribe, report address changes, or request to be removed, please send your name, address, phone number and email address toMartha Deutsch, 341 Central Ave, Half Moon Bay 94019, 650-726-9562, deutschm@....