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Greater Philadelphia Celiac Sprue Support Group Newsletter: Co-Presidents, Alice Bast, Executive Director, NFCA (National Foundation for Celiac Awareness) and Karen Dalrymple, RN, BS. Dietitian: Nancy Falini, MA, RD, LDN. Pharmaceutical Advisor: Sr. Jeanne Patricia Crowe, Pharm., D.R. Ph. Advisor: Dr. Anthony DiMarino, Chief of Gastroenterology - Jefferson Hospital and Newsletter Editor: Diane R. Taylor, put this newsletter together in order to help continue Phyllis's great work moving forward. NEXT MEETING: Friday October 20th Meeting: Abington Memorial Hospital 1200 Old York Rd. Abington, Pa 19001 (Conference Room) Suggest you have quarters. There is NO eating or DRINKING in the Auditorium! No One is allowed to enter before 5:45 pm, the vendors need time to set up!!!!! There will be volunteers available to answer questions. Volunteers will be located at a table in the hallway. See You There....
GUEST SPEAKER:
VANESSA MALTIN
author of:
"BEYOND RICE CAKES" 6:30: Vendors Open 7:30: Meeting VENDORS: IF you are accustomed to ordering in advance, we suggest YOU contact those vendors DIRECTLY. NOTE: Mr. Ritt's has traditionally requested that you place orders 10 days before the meeting date. l. Mr. Ritt's Bakery: 215-627-303 2. Gluten Free Baking and More: 518-279-3884 www.glutenfreebakingandmore.com 3. Sterk's Baker: 800-6-8-4505
4. GRAINLESS BAKERY: 570-689-9694
5. GSN: 917-885-3087
6. GOOD EATZ: 7. BOB and RUTH'S TRAVEL CLUB 8. TRIUMPH DINING CARD (dining cards and books) 9. GLUTEN FREE FOR ME (HAS NOT CONFIRMED) Books Available: 1) Nancy Patin Falini, MA, RD, LDN "Gluten Free Friends" and activity book for kids.
2) Connie Sarros has three cookbooks; Wheat-Free Gluten-tree Dessert Cookbook, Wheat-Free Gluten-Free Reduced Calorie Cookbook, Wheat-Free Gluten-Free Cookbook for Kids and Busy Adults. Connie's fourth book, WFGF Recipes for Special Diets, was published in 2004. This book is for celiacs who are also diabetic, autistic, vegetarian, vegan, or are allergic to com, soy, nuts, lactose, casein, rice, eggs, yeast, and more. 1) Tribute to Phyllis Our beloved founder, Phyllis Brogden, past on. We all owe Phyllis a tremendous debt of gratitude, not only for founding this group, but for spending countless hours speaking with newly diagnosed patients and for tirelessly leading our support group for the past 23 years. For those of you who did not know Phyllis, she was the pioneer, an advocate, and a champion for celiac awareness. Phyllis was one of a kind. Her contribution to the celiac community is immeasurable; as many of you can attest. The best tribute to Phyllis's leadership is to expand her passion to an ever growing constituency. We each need to empower ourselves to live well by making eating gluten tree better understood & more readily accessible. We need other celiacs to devote their talents to the cause. We owe it to Phyllis to continue the support group's mission of raising awareness, educating the newly diagnosed and sharing information. As celiac disease's profile is being raised, more & more people are questioning WHY they've been feeling so ill. The Atkins and South Beach diets have confounded the distinction between those "choosing" to eat a certain way & those who MUST - but nonetheless, these two approaches to eating HAVE provoked a lot of discussion about how much better one feels without wheat!! More diagnoses give strength to our efforts, but they also mean more newly diagnosed individuals who are feeling as lost & alone as we have felt. Also: check out this exciting new "find" which you can read all about at www.celiacchicks.com This clever website was started by 2 young women who work in Manhattan & have devoted their website to living a full & TASTY gluten free life in New York City A Fabulous Brooklyn Bakery Has Arrived! Josef’s Gluten-Free Bakery 1712 Avenue M, Brooklyn, NY (718) 336-9494 Check OUT www.capwiz.com/celiac ; Click on "Issues and Legislation"
Wonderful News for Catholics with Celiac Disease
As of January 2004, a truly low-gluten host (I should say an extremely low-gluten host) became available in the United States. The Benedictine Sisters of Perpetual Adoration of Clyde, Missouri, after ten years of perseverance, trial, and error, have produced a low-gluten host safe for celiacs and also approved by the Catholic Church for use at Mass. Each host is made and packaged in a dedicated wheat-free / gluten-free environment. The hosts are made separately by hand, unlike the common host which is stamped out of a long thin sheet of bread by a cutter. Therefore, each host is a slightly different size and shape. Most importantly, the finished hosts have been analyzed for gluten content. The gluten content of these hosts is reported as 0.01 %. In actuality, the gluten content is probably less than 0.01%. From a conversation with Sister Lynn, OSB, I learned that the result of the analysis of the finished host revealed "no gluten detected." The hosts are labeled as 0.01 % since the lowest limit of detection of this analysis was 0.01 %. In an article from the Catholic Review (February 15, 2004) Dr. Alessio Fasano was quoted as declaring these hosts "perfectly safe for celiac sufferers." For those who prefer to know the quantity of gluten present, I purchased some hosts to weigh and calculate gluten content. I used a university chemistry lab balance that can accurately weigh to 0.001 gram. I then calculated 0.01 % of that weight. On average, a whole host contains 37 micrograms of gluten. A quarter of a host, on average, contains 7.8 micrograms of gluten. (To refresh your "metric memory", a milligram is 1/1000 of a gram, whereas a microgram is 1 /1,000,000 of a gram). Enclosed with each package of hosts is an insert quoting from the November 2003 News Letter of the United States Conference of Catholic Bishops Secretariat for the Liturgy concerning these low-gluten hosts: "The Benedictine Sisters of Perpetual Adoration in Clyde, Missouri have developed a true low-gluten host. The total gluten content of this product is 0.01%; its contents of unleavened wheat and water and free of additives conform to the requirements of the Code of Canon Law, canon 924.2. This low gluten content is still enough gluten to confect bread for the Eucharist. Many gluten-intolerant persons may be able to consume it or some portion of it, but are strongly advised to check with their personal physicians in advance. This product is the only true, low-gluten altar bread known to the Secretariat and approved for use at Mass in the United States." We commend the Benedictine Sisters for their marvelous achievement and for their perseverance and dedication to the needs 9fthe celiac community. To contact the Sisters or to order hosts you may: call: 1-800-223-2772 or e-mail: altarbreads@benedictinesisters.org or write: Benedictine Sisters Altar Bread Department 31970 State Highway P Clyde, Missouri 64432 Submitted By Sister Jeanne Patricia Crowe, Pharm.D., R.Ph. 2/26/2004 2 ) TRAVELING WITH CELIAC: (Always Remember EATING OUT can be RISKY!) One more helpful Delphi Forum post from a woman in New Hampshire, regarding travel to Disney World. Not only has Disneyworld sent the head chef from the Grand Floridian to a GIG conference to learn more about celiac, but Kinnikinnick products are now also available in Disneyworld. Our recent trip to Disney was so wonderful - here are my positive experiences. We made reservations well in advance. Thank you to those of you who provided suggestions - they were very helpful. Staff seemed to be quite educated about cd and g-f dining. I did find it important to ask lots of questions because there are so many g-f details that can be forgotten. I tend to play it safe and order things plain So that's the bad news. The GOOD NEWS is that, unlike diabetes, this disease requires no injections, no blood checks and no record-keeping ... ''just'' a set of dietary changes. Removing the offending gluten from the diet CAN heal the body within a matter of months· Many people report an improvement in their general well-being. You might be wondering why, if few or no symptoms are present, it is important to know if you have celiac disease. Remember the 21 year-old mentioned in the first paragraph? That was my daughter, diagnosed with diabetes at age 9. I requested the celiac test for her last year; only because I heard of other children with diabetes testing positive. I had no idea that the depression, irritability, rising Al c, anemia, fatigue, and stomach aches that plagued her for years weren't just blood sugar-related. Even our doctor was skeptical about running the tests. Lo and behold, the blood tests came back positive. An intestinal biopsy confirmed the diagnosis. Today she is following a gluten free diet NOT an easy task for a college junior in New York City. But her improved diabetes control, the absence of stomach aches, irritability, and fatigue are rewarding compensation for the rigors of this new lifestyle. Life is still a banquet, but today's banquet features rice, potatoes, fruits, vegetables, meats, salads, and gluten- free substitutes instead of grabbing a bagel, donut, slice of pizza, wrap or soft pretzel on the way to class. As the medical community awakens to the risks associated with celiac disease, I believe that greater awareness will make living gluten-free easier (and healthier) for all affected by this "silent" disease. Editor's note: Renee Bernett has spent many years coordinating outreach activities for the JDRF Philadelphia Chapter. She .also serves on the lay review committee for JDRF's International research funding efforts . 3) DIABETES and CELIAC: Wh(e)at's Eating You? The time has come to take Celiac seriously. Contributed by Renee Bernett for the INTEGRATED DIABETES SERVICES newsletter: CONTROL SOLUTIONS, winter/spring 2004 issue What do a 32 year-old with heartburn, a 21 year-old with no energy and "out of the blue" low blood sugars, an 11 year-with recurrent bone fractures and a 10 year-old with no symptoms at all have in common, aside from having type 1 diabetes? They all have Celiac Disease: an incurable, but treatable, autoimmune condition that is now being called one of the most misunderstood and under-diagnosed diseases in America today. Once thought to be so rare that only 1 in 4000 Americans was diagnosed, celiac has now been shown to affect 1 in 133 Americans, and more significantly for the diabetes community, it may be present in 10% or more of those with type-l diabetes. Left untreated, celiac cal1 cause erratic blood sugars, infertility, miscarriages, dental problems, attention-deficit disorder, osteoporosis, lymphoma, neuropathy and other autoimmune diseases. Classically, celiac disease was thought to occur only in patients of short stature with chronic diarrhea. Now we know that more than 60% of patients with celiac disease have neither of these symptoms. Potential warning signs include constipation, rapid weight loss or gain, psychological complaints, skin disorders, anemia, abnormally low cholesterol, unpredictable blood sugar swings, or no symptoms at all. Many endocrinologists routinely screen their patients with diabetes for celiac disease every couple of years, even if the initial results were negative. A simple blood test that measures an antibody (tTG) can be used to detect celiac disease. If the blood test indicates the likelihood of celiac, the next step is an intestinal biopsy done under light sedation, and read by an experienced pathologist. Since 10% of first-degree relatives of those with celiac may also have the disease, a positive biopsy test should warrant having all family members screened.
Character Breakfasts CONTEMPORARY - chef gave a tour of g-f foods on the buffet - eggs, bacon, tons of fruit; she offered g-f pancakes that would take 30 minutes CRYSTAL PALACE - chef gave a tour of similar buffet - offered g-f pancakes or waffles (promised to clean waffle iron really carefully) GRAND FLORIDIAN - another tour of g-f buffet - offered g-f pancakes, hash browns that he would make special for me; I requested a bowl of berries since there were none on the buffet; they were delicious!!! OLIVIA'S @ OLD KEY WEST - chef brought out yogurt container for me to check, answered questions about menu, no buffet here. The GRAND FLORIDIAN was my favorite - we went early and the chef was wonderful!!! Lunches/dinners PLANET HOLLYWOOD - ok, but too busy; I had to repeat my requests and I felt a little nervous. The chef didn't come to speak to me. CINDERELLA'S CASTLE - chef/server created a salad with grilled salmon. Chef answered all my questions. Very good, quiet and away from the crowds. SCI-FI DINER @ MGM - what a fun place - you eat in a convertible at a drive-in theatre while watching old sci-fi movie. My kids had a blast. Chef offered to prepare just about anything for me - I had a plain steak (they're usually marinated) on a salad. Fries made in dedicated fryer. FULTON'S CRAB HOUSE - chef helped me choose a delicious meal, he made some minor accommodations. I had a Hawaiian fish, shrimp, salad, corn-on-the-cob. ALFREDO'S in Italy, Epcot - WOW! What wonderful service; I had rice pasta with shrimp marinara and g-f rolls (showed me ingredients) and salad. I enjoyed every bite (while my 6 yr old slept on my lap!) LE CELLIER in Canada, Epcot - another WOW! Chef prepared mussels, a fantastic chicken, roasted red potatoes, grilled asparagus all different from the menu items. She also offered g-f rolls. 4) The National Foundation for Celiac Awareness: Alice Bast, a dedicated Celiac Support group volunteer, has recently created a new non-profit organization. The National Foundation for Celiac Awareness is dedicated to finding a cure for celiac disease. The NFCA is registered as a public charity in the Commonwealth of Pennsylvania. All donations are tax-deductible to the extent provided by law. The Foundation will promote collaboration among scientists and institutions to optimize research potential. We will create an expert panel and competitive grant funding process. NFCA will also fund fellowships to encourage dedicated researchers to pursue careers in the celiac disease field! Philadelphia was once the "cradle of liberty" for a new nation- Philadelphia can also "give birth" to a comparable "liberation" for those with celiac, by spearheading a unified effort to find that elusive cure!!! Help yourself by supporting celiac research and awareness!
Show your support for the NFCA initiative and mission and for those who live with celiac everywhere. Even if you can't attend the fundraiser, finding a cure matters to us all, so consider making a tax-deductible donation. Why not honor a favorite chef who makes a special meal for you, or a doctor who didn't ignore your complaints or a colleague who makes sure to have GF foods at office events? These "in honor of' donations can be displayed on the NFCA website. Please see the attached brochure or register on line: www.celiacfoundation.org . 5) Disclaimer: The material contained in this newsletter is intended to be a general information resource. It is not intended for use in diagnosis or treatment. Medical questions should be directed to your physician. No liability is assumed by the author(s) or group for the recommendations, menus, or recipes described herein. No endorsement or criticism is intended for any of the companies or products mentioned. It is meant to be a guide only, to help you follow the gluten-free diet. The responsibility of following the gluten-free diet rests with the individual.
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