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Found 17 results

  1. Celiac.com 04/29/2010 - May is designated as National Celiac Awareness Month. As such, I thought it would be a great opportunity to explore the history of celiac disease. Most people think of celiac disease as a modern day ailment, which predominantly affects those of European descent and in Westernized societies. However in my research, I found that the best place to start when referencing the history of celiac disease, is actually the beginning of humans. In the beginning of humans, known as the Neolithic Period, humans were hunters and gatherers and primarily survived on fruits, nuts, and meat when available. During the Neolithic Period, humans evolved and began cultivating plants which quickly led to the agricultural revolution. With the agricultural revolution came a myriad of food antigens, such as dairy, eggs and processed grains. It was during this time that celiac disease was born. Some 8,000 years after making its debut, celiac was identified and named by a Greek physician known as Aretaeus of Cappadocia. In the first century A.D., Aretaeus documented information about, “The Coeliac Affection.” He named celiac disease, “koiliakos” derived from the Greek word for “abdomen”. In his descriptions of celiac Aretaeus stated, “If the stomach be irretentive of food and if it pass through undigested and crude, and nothing ascends into the body, we call such persons coeliacs”. While a name had been given to the disease, people with celiac still had no idea how to heal from the condition, and were still vastly unaware of the cause for their ailments. It wasn't until the early 19th Century that Dr. Mathew Baillie published his observations on celiac disease which he sited as, 'chronic diarrheal disorder causing malnutrition and characterized by a gas-distended abdomen'. In his observations, Dr. Baillie documented that some of his patients appeared to benefit from eating only rice. However important Dr. Baillie's findings were, they still went largely unnoticed by the medical community until 75 years later when an English doctor known as Dr. Samuel Gee, came into the scene. In 1888 Dr. Gee was working for the Great Ormond Street Hospital for Children in the United Kingdom when he demonstrated a set of clinical trials performed on children and adults with celiac disease. Dr. Gee was quoted as saying, “To regulate the food is the main part of treatment. The allowance of farinaceous foods must be small, but if the patient can be cured at all, it must be by means of diet.” As an example he sited a very sick child that was fed the best Dutch mussels every day during mussel season. The child thrived during mussel season, but as soon as the season was over, the child regressed and died before the next mussel season. In the 1920's, Sidney Hass presented the “Banana diet”. Sydney successfully treated 8 out of 10 children suffering with celiac disease using the banana diet. He claimed to have cured the 8 children that were on the banana diet, but the other 2 children not on the banana diet, died. The banana diet included the elimination of all bread, crackers, potatoes and cereals and for several decades, the banana diet was the only cure for celiac disease. Another important marker in the history of celiac disease were the findings by Dutch pediatrician, Dr. Willem Karel Dicke. In 1953 Dr. Dicke wrote his doctoral thesis for the University of Utrecht based on his observations that the ingestion of wheat proteins specifically, and not carbohydrates in general, were the cause of celiac disease. He was able to exemplify his findings based on bread shortages in the Netherlands during World War II. During the bread shortages, he found that the health of children with celiac improved tremendously. However, when the allied planes began dropping bread to the Netherlands, the same children quickly deteriorated. In the 1960's, it became evident that the best method for testing for celiac disease was to perform a biopsy. However, doctors were urged not to diagnose people as having celiac disease until it was proven that gluten was the cause for the damage. To determine if a patient had celiac disease, a biopsy would be performed to evaluate the damage done to the intestines. The patient would then be put on a gluten-free diet. Another biopsy would then be preformed to determine improvement in the intestines. After improvement the patient would be put back on a gluten diet, and another (3rd) biopsy would be preformed to determine reoccurring damages to the intestine, and thus the presence of celiac disease. This method was used for over 20 years as the best method for testing for celiac disease. Then in the 1980's studies by Dr. Stefano Guandalini, showed that the presence of celiac could be found in 95% of celiac cases by performing a single biopsy. In 1990 these findings helped create the new guidelines for celiac testing which were approved by ESPGHAN (European Society for Pediatric Gastroenterology). Also during this time, professionals starting recognizing celiac as an autoimmune disease and also began recognizing the correlation between gluten sensitivity and other autoimmune diseases. Here we are now in the year 2010; thirty years after the medical profession has successfully established the causes, tests and treatments for celiac disease, and thousands of years since celiac first made it's debut. Yet, as far as early diagnosis is concerned, we are still living in the dark ages. In this day and age, knowing what we know about celiac disease, childhood screening for celiac should already be mandatory. It's almost as if, when doctors were told in the 1960's to hold off on celiac diagnosis until they knew undoubtably that gluten was the cause for damage to intestines, they were never told, 'okay, now it's safe to diagnose for celiac'. Unfortunately, many (if not most) doctors still don't know how to appropriately diagnose patients for celiac disease, and therefor they continue to 'hold off' making celiac diagnoses, or misdiagnose regularly. Enforcing mandatory celiac screening in school age children has potential to eliminate the unnecessary suffering of millions of children and adults worldwide. My dearest hope is that we all get to see mandatory celiac testing in this lifetime. If you would like more information on “Celiac Awareness Month,” please check out the links below. The following links are trusted sites that also provide suggestions on how you can get involved and contribute to celiac awareness in your community. Celiac Disease Foundation Celiac Sprue Association Celiac Disease Timeline: Agricultural Revolution - celiac disease is born 1st Century A.D.- Aretaeus named celiac, “ koiliakos” 1st Century A. D.- Aretaeus documented“The Coeliac Affection.” 19th Century- Dr. Mathew Baillie published his observations on celiac 1888- Dr. Gee established the correlation between celiac and diet 1920's - Sydney Hass successfully treated celiac patients with “the banana diet” 1953 - Dr. Willem Karel Dicke confirmed wheat protein to be the cause for celiac disease 1960's - Biopsy established as the most accurate test for celiac 1980's - Dr. Stefano Guandalini established a single biopsy test for celiac 1990 - ESPGHAN established new guidelines for celiac biopsy testing Sources: Impact America's Silent Epidemic
  2. Celiac.com 01/19/2017 - A team of researchers recently set out to validate the celiac disease diagnoses recorded in the Danish National Patient Register. The research team included Stine Dydensborg, Dydensborg Sander, Ketil Størdal, Tine Plato Hansen, Anne-Marie Nybo Andersen, Joseph A Murray, Søren Thue Lillevang, and Steffen Husby. They are variously affiliated with the Hans Christian Andersen Children’s Hospital, Odense University Hospital, Institute of Clinical Research, University of Southern Denmark, Odense Patient Data Explorative Network (OPEN), Odense University Hospital, Odense, Denmark; Mental and Physical Health, Norwegian Institute of Public Health, Oslo, Department of Pediatrics, Ostfold Hospital Trust, Fredrikstad, Norway; Department of Pathology, Hvidovre Hospital, Department of Public Health, University of Copenhagen, Copenhagen, Denmark; Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN, USA; Department of Clinical Immunology, Odense University Hospital, Odense, Denmark. To validate the diagnoses, they used information on duodenal biopsies from a national register of pathology reports (the Patobank) and information on celiac disease-specific antibodies and human leukocyte antigen (HLA) genotypes obtained from patient medical records. Their study included all children born from 1995 to 2012 and registered as having celiac disease in the Danish National Patient Register. They reviewed all pathology reports on duodenal biopsies in the Patobank, along with medical record information on celiac disease-specific antibodies, such as anti-tissue transglutaminase 2 IgA and IgG, endomysial antibodies IgA, and anti-deamidated gliadin peptide IgG) and HLA genotypes. In the Danish National Patient Register, they found 2,247 children with celiac disease. Duodenal biopsies for 1,555 of the children (69%) were registered in the Patobank; 1,127 (50%) had biopsies consistent with celiac disease; i.e., Marsh 2–3. The team accessed the medical records of 95% of the children registered in the ­Danish National Patient Register with celiac disease. They found that 1,510 patients, or 67%, had one or more positive antibody-test results; 1,120, or 50% had anti-tissue transglutaminase 2 IgA ten times or more above the upper limit of the normal range and/or positive endomysial antibody results. The positive predictive value depended on the criteria used for validation and the types and numbers of registrations included in the analysis. Accordingly, the values ranged from 62% (95% confidence interval: 60%–64%) to 86% (95% confidence interval: 84%–87%). These findings indicate that the Danish National Patient Register is a valuable source to identify patients who have been diagnosed with celiac disease. However, they recommend that researchers validate and document diagnoses before using patient data for research purposes. Source: DovePress.com.
  3. Celiac.com 11/13/2014 - An anonymous donor has made a $2 million dollar contribution to the National Foundation for Celiac Awareness (NFCA). The donation is the largest in the organization's history, and will support the NFCA’s mission is to raise celiac disease awareness, promote research and testing testing, and improve the quality of life for celiacs eating a gluten-free diet. Since 2003, the NFCA has worked to promote celiac disease research and awareness. The grant will help to ensure support for the NFCA as it looks to increase research and awareness into the future. Stay tuned for updates on how the NFCA supplements or expands its ongoing efforts on behalf of people with celiac disease and gluten intolerance.
  4. Danna Korn founded R.O.C.K. in 1991 after her son, Tyler, was diagnosed with celiac disease. It has grown to international proportions, helping families all over the world deal with the unique challenges of raising a child on a gluten-free diet. When children are diagnosed with celiac disease at an early age, they usually have a severe intolerance to gluten, and are often extremely sick when ultimately diagnosed. Most parents share horror stories of visiting several doctors before finally arriving at a diagnosis, and are frustrated, exasperated, and angry, yet relieved to finally have a direction in which to turn. Sometimes it helps to talk about it, and it always helps to have some guidance when initially diving into the gluten-free diet. Raising Our Celiac Kids is a support group for parents, families and friends of kids with celiac disease or gluten intolerance. We welcome families of autistic kids involved in a gluten-free/casein-free dietary intervention program. We concentrate on dealing with the unique challenges that we have, including: Finding "fun" gluten-free treats for kids Menu ideas for school lunches, quick dinners, and sports snacks Helping the kids to take responsibility for reading labels, cooking and planning/preparing food How to prepare for unexpected birthday parties and food-oriented activities at school, church, and elsewhere Halloween, Easter, and other special days - how do we include our kids safely? Educating day-care providers and teachers - without burdening them Dealing with grandparents, babysitters, and "helpful" friends who offer gluten-containing foods to our kids Ensuring our kids won't cheat, and what to do WHEN they do Sending kids away to camp, friends' houses, and other times when we're not around to help The psychological impact of growing up with celiac disease (peer pressure, teenage years, and more) What do R.O.C.K. chapters do? R.O.C.K. chapters have R.O.C.K. parties! How often you meet will be up to you and your chapter members, but we suggest meeting every two months to start; you can judge from that point whether you'd like to meet more or less often. We'd like to eventually have a chat room, where local chapters can talk to each other or with other chapter members. (In the meantime, people can chat at http://groups.yahoo.com/group/CeliacKids). What goes on at a R.O.C.K. party? R.O.C.K. parties are for the kids and the adults. The kids enjoy gluten-free food and play, while the parents exchange new-product information, questions and concerns, and anything that they feel is pertinent. You may invite speakers (child psychologists, pediatricians, pediatric gastroenterologists, dietitians), and even provide entertainment (clowns, face painters, toys) for the kids. Remember your community centers - they often have teenagers who will entertain the kids - for free! Remember, you may have just a few families at first, but "build it and they will come" - keep it in mind! Should I start a R.O.C.K. chapter or do something on my own? I don't personally profit from any R.O.C.K. activities, so it doesn't benefit me either way. My vision for R.O.C.K. is to provide accurate, supportive information to families of gluten-free kids to make their lives easier and their kids' lives more enjoyable. The more cohesive we are, the more credible we are to new members, vendors, and the gluten-free community as a whole. If you decide to pursue a group on your own, I sincerely wish you the best of luck and hope you'll ask me for help in setting up your group if you need it. If there isn't a R.O.C.K. chapter in your area yet and you're interested in starting one, please contact Danna Korn at danna@dannakorn.com. R.O.C.K. Chapters in the United States Alabama Support Group - Mobile Contact: Marilyn Taylor ROCK’n Mobile, Alabama Tel: (251) 633-3528 E-mail: Taylor6211@bellsouth.net Slocomb - Support Group Contact: Nichole Alexander E-mail: mamma_hen3@hotmail.com Tel: (334) 886-7150 Alaska Chugiak - Support Group Raising Our Celiac Kids (R.O.C.K.) - ROCK'n Alaska Contact: Debbie Saddler Chugiak, AK 99567 Tel: (907) 688-6879 E-mail: alaskadebbie@gmail.com Arizona Gilbert - Support Group Raising Our Celiac Kids (R.O.C.K.) - Gilbert Chapter Contact: Deanna Frazee Gilbert, AZ Tel: (480) 641-8821 E-mail: deannafrazee@hotmail.com Phoenix - Support Group Greater Phoenix R.O.C.K. Contact: Lisa Potts Email: phoenixceliackids@gmail.com FB Page: facebook.com/PHX.ROCK Phone: (858) 442-5956 E-mail: lisa.potts4911@gmail.com Internet: www.phoenixrock.org Tucson - Support Group Raising Our Celiac Kids (R.O.C.K.) - Tucson Chapter Contact: Liz Attanasio Tel: (520) 877-9181 Tucson - ROCK'n Tucson Contact: Shelli Hanks Tucson, AZ 85750 Email: TucsonROCK@comcast.net Tel: (520) 577-0774 Arkansas Fayetteville, AR Melanie Faught Fayetteville, AR 72704 Tel: (479) 582-9232 E-mail: melaniefaught@cox.net California Conejo Valley - Support Group ROCK'n Conejo Valley Contact: Melissa Riches Westlake Village, CA 91361 Tel: (818) 706-0197 E-mail: melissa.riches@sbcglobal.net Danville - Support Group Contact: Ann Reigelman Raising Our Celiac Kids (R.O.C.K.) - Danville Chapter Danville, CA E-mail: areigelman@yahoo.com Lake Balboa - Support Group Contact: Melissa Gray Raising Our Celiac Kids (R.O.C.K.) - Lake Balboa Chapter Tel: (818) 510-0534 E-mail: Melissagray808@gmail.com Los Angeles - Support Group Contact 1: Amy Harley Tel: (818) 249-2432 E-mail: harleyhome@earthlink.net Contact 2: Cheryl Cohen Tel: (818) 784-4516 E-mail: cohencheryl@yahoo.com Moreno Valley - Support Group Contact: Kellee Shearer Raising Our Celiac Kids (R.O.C.K.) - Moreno Valley Chapter 10034 Snipe Circle Moreno Valley, CA 92557 Tel: (951) 242-8448 E-mail: Treshearer@aol.com Orange County - Support Group Contacts: Randi Leinen Raising Our Celiac Kids (R.O.C.K.) - Orange County Chapter E-mail: RMLeinen@aol.com ROCK’n Orange County, CA Contact: Drew Grant Tel: (949) 257-6349 E-mail: orangecountyrock@gmail.com Palo Alto - Support Group Contact: Kelly Velez or Debbie Duncan Bay Area ROCK E-mail: kellyvelez@comcast.net Tel: (650) 303-8409 E-mail: debbie@debbieduncan.com Tel: (650) 494-6959 San Diego - Support Group Raising Our Celiac Kids (R.O.C.K.) - San Diego Chapter Contact: Brenda McDowell E-mail: sdrockchapter@gmail.com San Francisco - Support Group Contact: Lisa Palme Raising Our Celiac Kids (R.O.C.K.) - San Francisco Chapter E-mail: palmer@smccd.net Sebastopol - Support Group ROCK North Bay Chapter Contact: Jennifer Iscol Sebastopol, CA 95472 Tel: (707) 824-5830 E-mail: iscol@aol.com Visalia (Central) - Support Group Contact: Shannon Williams Tel: (559) 741-1671 Visalia, CA Colorado Peyton - Support Group ROCK’n Peyton, CO Crystal Brauer Tel: (719) 494-8590 E-mail: Brauer.family@yahoo.com Connecticut Raising Our Celiac Kids (R.O.C.K) Fairfield County CT Contact: Karen Loscalzo/ Monika Lazaro/ Carolyn Caney E-mail: rockfairfieldcounty@gmail.com Internet: www.ROCKFairfieldCounty.com Simsbury - Support Group Raising Our Celiac Kids - R.O.C.K. - Simsbury Chapter Contact: Mark & Tracy Saperstein Tel: (860) 651-4857 E-mail: mtbahs@comcast.net Waterford - Support Group Raising Our Celiac Kids - R.O.C.K. - Waterford Chapter Contact: Donna Kensel Waterford, CT E-mail: CtCeliacKids@aol.com District of Columbia (Washington D.C.) District of Columbia - Support Group Contact: Linda Hickman Northern VA/Washington DC R.O.C.K. Tel: (410) 290-5224 E-mail: hickman68@verizon.net Florida Apopka - Support Group Contact: Deborah Pfeifle Raising Our Celiac Kids (R.O.C.K.) - Apopka Chapter Apopka, FL 32712 Tel: (407) 880-6104 E-mail: dpfeifle@earthlink.net Coral Springs/Palm Beach - Support Group Contacts: Janna Faulhaber and Stacey Galper Raising Our Celiac Kids (R.O.C.K.) - Coral Springs/Palm Beach Chapter Tel: (954) 255-7855 E-mail: Staceynagel@paxson.com Odessa (Tampa) - Support Group Contact: Terri Willingham Raising Our Celiac Kids (R.O.C.K.) - Odessa Chapter Orlando - ROCK'n Celebration - Support Group Contact: Rose Parvaz Celebration, FL 34747 E-mail: rose.parvaz@celebration.fl.us Palm Beach gardens - Support Group ROCK'n Palm Beach Gardens Contact: Kimberly Wade Palm Beach Gardens, FL 33418 E-mail: tkcrw@comcast.net Tel: (561) 625-9005 Tampa - Support Group Contact: Melissa Ransdell Raising Our Celiac Kids (R.O.C.K.) - Tampa Chapter 14521 Nettle Creek Rd. Tampa, FL 33624 Tel: (813) 265-8105 Georgia Atlanta - Support Group Contact: Jeff Lewis, M.D. Children's Center for Digestive Health Care Raising Our Celiac Kids (R.O.C.K.) - Atlanta Chapter E-mail: jlewis@ccdhc.org Illinois Chicago - Support Group ROCK'n Chicago Contact: Alexandra Vavouliotis Tel: (847)-962-7244 E-mail: alexvav24@mac.com Dekalb - Support Group Contact: Audrey O'Sullivan Raising Our Celiac Kids (R.O.C.K.) - Stillman Valley Chapter Dekalb, IL Tel: (815) 756-2606 E-mail: Audrey08@aol.com ROCKn DuPage & Cook County Aleksandra de Leon -DuPage County E-mail: aleksandra.deleon@gmail.com Tel: 630-745-7429 Ilene Harris- Cook County E-mail: isf27@yahoo.com Tel: 847-222-9950 Moline - Support Group Contact: Lesley Lamphier ROCK'n Illinois (Moline) Moline, IL 61265 Tel: (309) 736-1507 E-mail: celiackids@mchsi.com Springfield - Support Group Land of Lincoln Celiac Support Group Contact: Joyce Hall Raising Our Celiac Kids (R.O.C.K.) - Springfield Chapter Springfield, IL Washington - Support Group Heart of Illinois Celiac Kids Contact: Samantha Young E-mail: info@hoiceliackids.com Indiana Henryville - Support Group Contact: Kristie Williams ROCK'n Indiana (Henryville) Henryville, IN 47126 Tel: (812) 294-1179 E-mail: kristiewilliamsrn@hotmail.com Indianapolis - Support Group Contact: Kelly Kurzhal ROCK’n Indianapolis Indianapolis, IN 46217 Tel: (317) 697-4933 E-mail: kellykurzhal@hotmail.com Mooresville - Support Group Contact: Cindy Holder Raising Our Celiac Kids (R.O.C.K.) - Mooresville Chapter 375 E. Countyline Rd. Mooresville, IN 46158 Tel: (317) 831-9871 E-mail: Holders2@comcast.net Iowa Des Moines - Support Group Contact: Lindsay Amadeo Raising Our Celiac Kids (R.O.C.K.) - Des Moines Chapter Des Moines, IA E-mail: llamadeo@yahoo.com Maryland ROCK'n Maryland Contact: Steffani Mykins Tel: (410) 626-1958 E-mail: stfine@comcast.net ROCK’n Maryland Contact: Lindsay Moe Mt. Airy, MD 21771 (443) 799-3432 E-mail: lindsaymoe@ymail.com Massachusetts Longmeadow - Support Group ROCK'n MA Contact: Christie Freda Longmeadow, MA 01106 E-mail: cfreda126@comcast.net Tel: (413) 567-5748 Somerset - Support Group Contact: Stacey Nasrallah ROCK'n Somerset (MA) Somerset, MA 02726 Tel: (508) 674-6211 E-mail: info@somersetrock.org Internet: http://www.somersetrock.org Michigan Ann Arbor - Support Group Contact: Anne MacDougald ROCK’n Michigan E-mail: anniemacdougald@gmail.com Macomb Township - ROCK'n MI Support Group Contact: Kimberly Fanelli Macomb Township, MI 48044 Tel: (586) 226-8480 E-mail: kfanelli@mac.com West Bloomfield - Support Group Contact: Gail Smoler Raising Our Celiac Kids (R.O.C.K.) - West Bloomfield Chapter 4358 Strathdale Court West Bloomfield, MI 48323 Tel: (248) 851-9451 E-mail: GailS63@aol.com Minnesota Minneapolis/St. Paul Support Group Contact: Lynda Benkofske Raising Our Celiac Kids (R.O.C.K.) - ROCK-Minneapolis/St. Paul Chapter 15470 County Rd. 35 Elk River, MN 55330 Tel: (763) 263-7679 E-mail: ljbenkof@ties2.net Mississippi Columbia - Support Group Contact: Beth Broom Raising Our Celiac Kids (R.O.C.K.) - South Mississippi Chapter 50 Wilks Road Columbia, MS 39429 E-mail: sbroom@dixie-net.com Missouri O'Fallon - Support Group Contact: Beth Anne Miller 7264 Sweetcider Lane O'Fallon, MO 63366 Tel: (636) 294-2037 E-mail: Frankbethm@aol.com Montana Billings - ROCK'n Montana Support Group Billings, MT 59102 Contact: Perrin Grubbs E-mail: perrin@bresnan.net Tel: (406) 655-7897 Nevada Reno - Support Group Contact: Carrie Owen Raising Our Celiac Kids (R.O.C.K.) - Reno Chapter Tel: (775) 857-2708 E-mail: Renorockgroup@yahoo.com New Hampshire Manchester - Support Group Contact: Michelle Ouellette ROCK'n New Hampshire Manchester, NH 03102 Tel: (603) 627-1831 E-mail: rocknh2006@gmail.com New Jersey Blairstown - Support Group Contact: Marla Benson Raising Our Celiac Kids (R.O.C.K.) - Blairstown Chapter Blairstown, NJ MBenson890@aol.com (808) 362-7752 Freehold - Support Group Contact: Elissa Carlin Raising Our Celiac Kids (R.O.C.K.) - Freehold Chapter Marlboro, NJ 07746 Tel: (732) 252-8309 E-mail: ElissaC75@aol.com Morristown - Support Group ROCK'n New Jersey Contact: Andrea Kitzis Smith Morristown, NJ 07960 Tel: (201) 965-7309 E-mail: akitsm@att.net Short Hills - Support Group Contact: Ellie Fried Raising Our Celiac Kids (R.O.C.K.) - North Jersey Chapter Tel: (973) 912-0253 New Mexico Albuquerque - Support Group Contact: Traci Shrader Tel: (505) 450-1156 E-mail: tashrader@msn.com New York Auburn - Support Group R.O.C.K.'n Auburn Contact: Nicki Hai Tel: (315) 252-2764 E-mail: jnhai@roadrunner.com Glens Falls Region - Support Group Contact: Lisa Fox Lake George, NY 12845 Tel: (518) 668-5838 E-mail: fox_lisa@hotmail.com ROCK’n Hudson Valley, NY Contact: Terresa Bazelow Thompson Ridge, NY Tel: (845) 609-7432 E-mail: HVNYROCK@aol.com Long Island - Support Group Contact: Christine Lauria East End Raising Our Celiac Kids (R.O.C.K.) E-mail: eastendrock@yahoo.com Internet: www.rockli.com Nassau County- Support Group Contact: Angela Silverstein Raising Our Celiac Kids (R.O.C.K.) - Lynbrook Tel: (516) 593-2904 E-mail: venusangmm1@optonline.net Nassau/Suffolk - Support Group Contact: Randi Albertelli Raising Our Celiac Kids (R.O.C.K.) - Long Island Chapter E-mail: rsquared31@optonline.net Contact 2: Jill Schneider Tel: (516) 551-4564 E-mail: jahms@verizon.net Rockland, NY - Bergen, NJ Raising Our Celiac Kids (R.O.C.K.) - Rockland, NY - Bergen, NJ Chapter Contact: Gabrielle Simon Telephone: (646) 342-6960 Email: nynjrockmom@yahoo.com Rome - Support Group Mohawk Valley R.O.C.K. (upstate New York) Contact: Rebecca Madeira Rome, NY Tel: (315) 337-7671 Upstate - Support Group ROCK'n Upstate New York Contact: Karen Dorazio Jamesville, NY 13078 Tel: (315) 469-8154 E-mail: kdorazio@twcny.rr.com Vestal, NY ROCK’n Vestal, NY Contact: Razi Lissy E-mail: raziher@gmail.com Western New York - Support Group Raising Our Celiac Kids (R.O.C.K.) - Western New York Chapter Buffalo / Niagara Falls NY Contact: Jeanette Yuhnke Tel: (716) 625-8390 Internet: http://www.glutenfreeinwny.com/WNYCeliacKids.php Westchester, NY ROCK’n Westchester, NY Contact: Erica Peltz E-mail: Eps2104@gmail.com Tel: (917) 612-4676 North Carolina Charlotte, Support Group Contact: Nikki Everett Raising Our Celiac Kids (R.O.C.K.) - Charlotte Chapter Huntersville, NC 28078 Tel: (704) 804-4090 E-mail: haircolorexpertise@hotmail.com Harrisburg - Support Group Contact: Linda Witherspoon 5018 Wynford Ct. Harrisburg, NC 28075 Tel: (704) 957-6100 E-mail: Linda.witherspoon@aol.com Stantonsburg - Support Group ROCK’n North Carolina Contact: Carrie Forbes Stantonsburg, NC 27883 Tel: (252) 238-3132 E-mail: gingerlemongirl@gmail.com North Dakota Fargo - Support Group Contact: Stacey Juhnke Tel: (701) 237-4854 E-mail: DSJuhnke@yahoo.com Ohio Akron - Support Group Contact: Sue Krznaric Raising Our Celiac Kids (R.O.C.K.) - Akron Chapter Akron, OH Tel: (330) 253-1509 E-mail: skrznaric@cs.com Akron - Support Group Contact: Therese Semonin Raising Our Celiac Kids (R.O.C.K.) - Akron Chapter CSA Chapter 111, S.O.S. Save Our Stomachs Cincinnati - Support Group Contact: Beth Koenig Raising Our Celiac Kids (R.O.C.K.) - Cincinnati Chapter Cincinnati, OH E-mail: BethKoenig@cinci.rr.com Tel: (513) 923-4435 Cleveland - Support Group ROCK’n Cleveland Contact: Tracey Lavine Solon, OH 44139 Tel: (216) 533-1285 E-mail: Tracey95@aol.com Toledo - ROCK'n Toledo Support Group Contact: Amy Kinkaid Toledo, OH 43615 E-mail: kinkaida@bex.net Tel: (419) 509-6913 Oregon Salem - Support Group Contact: Kristen Klay Raising Our Celiac Kids (R.O.C.K.) - Salem Chapter Tel: (503) 581-3884 E-mail: kristenklay@yahoo.com Pennsylvania Greenville - Support Group Contact: Fiona Garner Raising Our Celiac Kids (R.O.C.K.) - Greenville Chapter Greenville, PA Glenside - Support Group Raising Our Celiac Kids (R.O.C.K.) - Glenside Contact: Wilhelmina Green Glenside, PA 19038 Tel: (215) 756-2708 E-mail: Wilhelmina.green@gmail.com Greensburg - Support Group Contact: Martin Martinosky, Jr. Raising Our Celiac Kids (R.O.C.K.) - Greensburg Chapter Greensburg, PA Tel: (724) 834-3435 E-mail: ROCKchapter@aol.com Hanover - Support Group ROCK’n Hanover Contact: Melissa Panzer Hanover, PA 17331 Tel: (717) 633-1667 E-mail: Glutenfree4life@live.com Harrisburg - Support Group Gluten Intolerance Group of Harrisburg Harrisburg, PA Tel: (717) 520-9817 Lancaster/York - Support Group Contact: Janelle Gregory Tel: (717) 687-8586 E-mail: janellegregory@verizon.net Lansdale - Support Group ROCK Bucks Montgomery Contact: Holly and Steve Staugaitis Lansdale, PA 19446 Tel: (215) 997-2706 E-mail: hollystaugaitis@gmail.com South Carolina Charleston - Support Group Contact: Cathy Leeke Lowcountry R.O.C.K. Tel: (678) 637-3277 E-mail: cwleeke@yahoo.com Clover - Support Group Contact: Lauretta McInnis Raising Our Celiac Kids (R.O.C.K.) - Clover Chapter Tel: (803) 222-5143 E-mail: laurettamcinnis@gmail.com Easley - Support Group Contact: Laura Armstrong Raising Our Celiac Kids (R.O.C.K.) - Easley Chapter Easley, SC Tel: (864) 850-0344 Lexington - Support Group Contact: Gail Fox Raising Our Celiac Kids (R.O.C.K.) - Lexington Chapter Lexington, SC 29072 Tel: (803) 957-7658 E-mail: gailfox@sc.rr.com Tennessee Nashville - Support Group Contact: Janet Lowery Raising Our Celiac Kids (R.O.C.K.) - Nashville Chapter Tel: (615) 758-2674 Woodlawn - Support Group Contact: Shantal Green Woodlawn, TN Tel: (931) 648-2289 Texas Austin - Support Group Contact: Frances Kelley ROCK'n Austin - Alamo Celiac GIG Austin, TX 78739 E-mail: fkelley@austin.rr.com Tel: (512) 301-2224 Dallas/FortWorth - Support Group Contact: Kelly LeMonds, Leader Raising Our Celiac Kids (R.O.C.K.) - Wylie Chapter 1821 Spinnaker Way Drive Wylie, Texas 75098-7855 Tel: (972) 442-9328 E-mail: leader@dallasrock.org Internet: http://www.dallasrock.org Dallas/FortWorth - Support Group Contact: Diane McConnell Raising Our Celiac Kids (R.O.C.K.) - Dallas/FortWorth Chapter Tarrant County, TX Tel: (817) 849-8646 E-mail: fortworthrock@swbell.net Houston - Support Group Contact: Janet Y. Rinehart, Chairman Houston Celiac Sprue Support Group Raising Our Celiac Kids (R.O.C.K.) - Houston Chapter 13722 Ashley Run Houston, TX 77077-1514 Tel: (281) 679-7608 E-mail: txjanet@swbell.net Internet: http://www.csaceliacs.org/ Houston - Support Group Contact: Faye Sallee Raising Our Celiac Kids (R.O.C.K.) - Houston Chapter 14830 Sagamore Hills Houston, TX 77082 Tel: (281) 496-9166 Houston - ROCK'n Houston Support Group Comtact: Monica Ryan Houston, TX 77025 Tel: (713) 667-1963 E-mail: Mwryan@ipa.net Lubbock - Support Group Contact: Beth Trostle ROCK'n Lubbock Tel: (806) 794-5917 E-mail: calvintrostle@nts-online.net San Antonio - Support Group Contact: Rose and Michael Stevens Raising Our Celiac Kids (R.O.C.K.) - San Antonio Chapter San Antonio, TX Tel: (210) 495-7757 E-mail: info@kidceliac.com Internet: http://www.kidceliac.com Victoria - Support Group Contact: Julie Bauknight Raising Our Celiac Kids (R.O.C.K.) - Victoria Chapter Victoria, TX 77901 Tel: (361) 572-9252 Utah Holladay - Support Group Contact: Cathy Snowball ROCK’n Utah Holladay, UT 84121 E-mail: kileyannsmom@hotmail.com Ogden - Support Group Contact: Eileen Leatherow Raising Our Celiac Kids (R.O.C.K.) - Ogden Chapter Ogden, UT Virginia Ashburn - Support Group Keith Bird Tel: (703) 348-7607 rock@birdmk1.plus.com Bristow - Support Group ROCK’n Bristow Contact: Michael and Elizabeth Brown Bristow, VA 20136 Tel: (703) 753-9161 E-mail: 2xx1xy@comcast.net Fredericksburg - Support Group ROCK’n Fredericksburg Contact: Kathy Paz-Craddock Tel: (703) 507-0609 E-mail: kalalilys@gmail.com Paeonian Springs - Support Group Raising Our Celiac Kids (R.O.C.K.) - Paeonian Springs Becky Shore Tel: (571) 252-0036 E-mail: zoo2u@comcast.net Virginia Beach - Support Group Contact: Cynthia Olson E-mail: glutenfreemom@hotmail.com Washington Bellingham - Support Group Contact: Jean McFadden Layton ROCK'n Washington Bellingham, WA 98229 Tel: (360) 734-1659 E-mail: glutenfreekids@yahoo.com Bothell, WA - Support Group Contact: Lynn Crutcher Rock'n Washington Bothell, WA 98011 Tel: (425) 205-1327 E-mail: gfkids1@yahoo.com Poulsbo - Support Group Contact: Tim & Dawn Simonson Raising Our Celiac Kids (R.O.C.K.) - Poulsbo Chapter Poulsbo, WA 98370 Tel: (360) 779-9292 E-mail: timsimonson@csi.com Seattle - Support Group Contact - Irina Risuhina Raising Our Celiac Kids (R.O.C.K.) - Seattle Chapter E-Mail: iris510@hotmail.com Spokane - Support Group Contact: Jennifer Fancher ROCK'n Spokane, WA Spokane, WA Tel: (509) 891-7250 E-mail: nelsonfancher@live.com Vancouver - Support Group Contact: Theressa Rachetto Vancouver, WA 98662 Tel: (360) 713-1504 E-mail: theressarachetto@gmail.com Yakima - Support Group ROCK’n Yakima, WA Contact: Shanta Gervickas Tel: (509) 965-1130 E-mail: Shanta@network7.com West Virginia Hurricane - Support Group Contact: Karen Daniel Raising Our Celiac Kids (R.O.C.K.) - Hurricane Chapter 340 Green Acres Dr. Hurricane, WV 25526 Tel: (304) 757-0696 E-mail: krdaniel@suddenlink.net Wisconsin DePere - Support Group Contact: Pam Rourke Tel: (920) 339-7867 E-mail: mrourke@new.rr.com Jackson - Support Group Contact: Yvonne Schwalen Raising Our Celiac Kids (R.O.C.K.) - Jackson Chapter E-mail: trainman280@netzero.net R.O.C.K. Chapters in Canada Alberta ROCK 'n Olds Olds, Alberta, Canada Amy Smart 403-415-5789 asmart@telus.net
  5. Celiac.com 01/09/2013 - Since 2009, gluten-free items have seen an astonishing 114% growth rate on restaurant and food establishment menus nationwide. That trend seems set to continue in 2012, with news that gluten-free offerings were the top addition to American pizza menus. In addition to the controversial move by Domino's Pizza to launch a gluten-free crust (though not a gluten-free pizza), numerous other pizza retailers also added gluten-free offerings in 2012. Some notable examples include Gatti's Pizza, Pie Five Pizza Co., Uncle Maddio's Pizza Joint, Detroit Style Pizza Co., Russo's New York Pizzeria and Russo's Coal-Fired Italian Kitchen, Canada's Pizza 73, NYPD Pizza and Mazzio's. Meanwhile, major pizza retailer Chuck E. Cheese continued to expand its current national gluten-free pizza offerings. Additionally, Naked Pizza sought to bring attention to celiac disease and gluten-free issues by honoring leaders in the celiac disease and gluten-free communities through its inaugural sponsorship of the Foggy Awards. A number of other pizza retailers with gluten-free pizzas and other offerings include: Amici's East Coast Pizzeria, Godfather's Pizza, Patxi's Chicago Pizza, and Extreme Pizza, to name just a few. Source: http://www.pizzamarketplace.com/article/204985/Gluten-free-tops-pizza-menu-trends-in-2012
  6. The National Celiac Association remains dedicated to the mission of supporting, educating and advocating for individuals with celiac disease and non-celiac gluten sensitivity, their families and communities across the nation. Our grassroots approach hasn’t changed in the 24 years we have been serving the community. Wherever you may reside, you matter to us and we are here to help you! We welcome support groups who would like to team up with us to provide education and support on a local level. Over 70 support groups and former CSA chapters are in the process of joining our team and more would be wonderful. Together our outreach will be both nurturing and empowering. Executive Director Lee Graham Web site: https://www.nationalceliac.org
  7. Celiac.com 09/13/2010 - Happy National Celiac Disease Awareness Day! Here at Celiac.com we sometimes forget this special day because to us every day is Celiac Awareness Day! For those who don't know, each September 13th is the official "National Celiac Disease Awareness Day" due to United States Senate Resolution (S.Res. 563), which was adopted in 2006. September 13th was chosen for this important day because it is Dr. Samuel Gee’s birthday—who was the first medical doctor to discover a link between celiac disease and a person's diet, way back in the late 1800's. He once said "if the patient can be cured at all, it must be by means of diet." Celiac.com hereby proclaims that forthwith on this day EVERYONE should eat gluten-free—and everyone should also be sure to hug a celiac! Oh, and don't forget to give thanks to Dr. Gee before eating that gluten-free food—after all, if it weren't for him we would probably all be pretty miserable right now! More information about Dr. Samuel Gee can be found at: https://www.celiac.com/articles/77/1/The-Celiac-Affection-in-Children-1---Edinburgh-Med-Journ-Vol-XXXV-NOIV-Oct-1889-pp-321-330/Page1.html http://www.whonamedit.com/doctor.cfm/1312.html http://www.aim25.ac.uk/cgi-bin/search2?coll_id=7101&inst_id=8 Source: http://www.csaceliacs.org/documents/CeliacAwarenessDaySamuelGee.pdf
  8. Danna Korn founded R.O.C.K. in 1991 after her son, Tyler, was diagnosed with celiac disease. It has grown to international proportions, helping families all over the world deal with the unique challenges of raising a child on a gluten-free diet. When children are diagnosed with celiac disease at an early age, they usually have a severe intolerance to gluten, and are often extremely sick when ultimately diagnosed. Most parents share horror stories of visiting several doctors before finally arriving at a diagnosis, and are frustrated, exasperated, and angry, yet relieved to finally have a direction in which to turn. Sometimes it helps to talk about it, and it always helps to have some guidance when initially diving into the gluten-free diet. Raising Our Celiac Kids is a support group for parents, families and friends of kids with celiac disease or gluten intolerance. We welcome families of autistic kids involved in a gluten-free/casein-free dietary intervention program. We concentrate on dealing with the unique challenges that we have, including: Finding "fun" gluten-free treats for kids Menu ideas for school lunches, quick dinners, and sports snacks Helping the kids to take responsibility for reading labels, cooking and planning/preparing food How to prepare for unexpected birthday parties and food-oriented activities at school, church, and elsewhere Halloween, Easter, and other special days - how do we include our kids safely? Educating day-care providers and teachers - without burdening them Dealing with grandparents, babysitters, and "helpful" friends who offer gluten-containing foods to our kids Ensuring our kids won't cheat, and what to do WHEN they do Sending kids away to camp, friends' houses, and other times when we're not around to help The psychological impact of growing up with celiac disease (peer pressure, teenage years, and more) What do R.O.C.K. chapters do? R.O.C.K. chapters have R.O.C.K. parties! How often you meet will be up to you and your chapter members, but we suggest meeting every two months to start; you can judge from that point whether you'd like to meet more or less often. We'd like to eventually have a chat room, where local chapters can talk to each other or with other chapter members. (In the meantime, people can chat at http://groups.yahoo.com/group/CeliacKids). What goes on at a R.O.C.K. party? R.O.C.K. parties are for the kids and the adults. The kids enjoy gluten-free food and play, while the parents exchange new-product information, questions and concerns, and anything that they feel is pertinent. You may invite speakers (child psychologists, pediatricians, pediatric gastroenterologists, dietitians), and even provide entertainment (clowns, face painters, toys) for the kids. Remember your community centers - they often have teenagers who will entertain the kids - for free! Remember, you may have just a few families at first, but "build it and they will come" - keep it in mind! Should I start a R.O.C.K. chapter or do something on my own? I don't personally profit from any R.O.C.K. activities, so it doesn't benefit me either way. My vision for R.O.C.K. is to provide accurate, supportive information to families of gluten-free kids to make their lives easier and their kids' lives more enjoyable. The more cohesive we are, the more credible we are to new members, vendors, and the gluten-free community as a whole. If you decide to pursue a group on your own, I sincerely wish you the best of luck and hope you'll ask me for help in setting up your group if you need it. If there isn't a R.O.C.K. chapter in your area yet and you're interested in starting one, please contact Danna Korn at danna@dannakorn.com. R.O.C.K. Chapters in the United States Alabama Support Group - Mobile Contact: Marilyn Taylor ROCK’n Mobile, Alabama Tel: (251) 633-3528 E-mail: Taylor6211@bellsouth.net Slocomb - Support Group Contact: Nichole Alexander E-mail: mamma_hen3@hotmail.com Tel: (334) 886-7150 Alaska Chugiak - Support Group Raising Our Celiac Kids (R.O.C.K.) - ROCK'n Alaska Contact: Debbie Saddler Chugiak, AK 99567 Tel: (907) 688-6879 E-mail: alaskadebbie@gmail.com Arizona Gilbert - Support Group Raising Our Celiac Kids (R.O.C.K.) - Gilbert Chapter Contact: Deanna Frazee Gilbert, AZ Tel: (480) 641-8821 E-mail: deannafrazee@hotmail.com Phoenix - Support Group Greater Phoenix R.O.C.K. Contact: Lisa Potts Email: phoenixceliackids@gmail.com FB Page: facebook.com/PHX.ROCK Phone: (858) 442-5956 E-mail: lisa.potts4911@gmail.com Internet: www.phoenixrock.org Tucson - Support Group Raising Our Celiac Kids (R.O.C.K.) - Tucson Chapter Contact: Liz Attanasio Tel: (520) 877-9181 Tucson - ROCK'n Tucson Contact: Shelli Hanks Tucson, AZ 85750 Email: TucsonROCK@comcast.net Tel: (520) 577-0774 Arkansas Fayetteville, AR Melanie Faught Fayetteville, AR 72704 Tel: (479) 582-9232 E-mail: melaniefaught@cox.net California Conejo Valley - Support Group ROCK'n Conejo Valley Contact: Melissa Riches Westlake Village, CA 91361 Tel: (818) 706-0197 E-mail: melissa.riches@sbcglobal.net Danville - Support Group Contact: Ann Reigelman Raising Our Celiac Kids (R.O.C.K.) - Danville Chapter Danville, CA E-mail: areigelman@yahoo.com Lake Balboa - Support Group Contact: Melissa Gray Raising Our Celiac Kids (R.O.C.K.) - Lake Balboa Chapter Tel: (818) 510-0534 E-mail: Melissagray808@gmail.com Los Angeles - Support Group Contact 1: Amy Harley Tel: (818) 249-2432 E-mail: harleyhome@earthlink.net Contact 2: Cheryl Cohen Tel: (818) 784-4516 E-mail: cohencheryl@yahoo.com Moreno Valley - Support Group Contact: Kellee Shearer Raising Our Celiac Kids (R.O.C.K.) - Moreno Valley Chapter 10034 Snipe Circle Moreno Valley, CA 92557 Tel: (951) 242-8448 E-mail: Treshearer@aol.com Orange County - Support Group Contacts: Randi Leinen Raising Our Celiac Kids (R.O.C.K.) - Orange County Chapter E-mail: RMLeinen@aol.com ROCK’n Orange County, CA Contact: Drew Grant Tel: (949) 257-6349 E-mail: orangecountyrock@gmail.com Palo Alto - Support Group Contact: Kelly Velez or Debbie Duncan Bay Area ROCK E-mail: kellyvelez@comcast.net Tel: (650) 303-8409 E-mail: debbie@debbieduncan.com Tel: (650) 494-6959 San Diego - Support Group Raising Our Celiac Kids (R.O.C.K.) - San Diego Chapter Contact: Brenda McDowell E-mail: sdrockchapter@gmail.com San Francisco - Support Group Contact: Lisa Palme Raising Our Celiac Kids (R.O.C.K.) - San Francisco Chapter E-mail: palmer@smccd.net Sebastopol - Support Group ROCK North Bay Chapter Contact: Jennifer Iscol Sebastopol, CA 95472 Tel: (707) 824-5830 E-mail: iscol@aol.com Visalia (Central) - Support Group Contact: Shannon Williams Tel: (559) 741-1671 Visalia, CA Colorado Peyton - Support Group ROCK’n Peyton, CO Crystal Brauer Tel: (719) 494-8590 E-mail: Brauer.family@yahoo.com Connecticut Raising Our Celiac Kids (R.O.C.K) Fairfield County CT Contact: Karen Loscalzo/ Monika Lazaro/ Carolyn Caney E-mail: rockfairfieldcounty@gmail.com Internet: www.ROCKFairfieldCounty.com Simsbury - Support Group Raising Our Celiac Kids - R.O.C.K. - Simsbury Chapter Contact: Mark & Tracy Saperstein Tel: (860) 651-4857 E-mail: mtbahs@comcast.net Waterford - Support Group Raising Our Celiac Kids - R.O.C.K. - Waterford Chapter Contact: Donna Kensel Waterford, CT E-mail: CtCeliacKids@aol.com District of Columbia (Washington D.C.) District of Columbia - Support Group Contact: Linda Hickman Northern VA/Washington DC R.O.C.K. Tel: (410) 290-5224 E-mail: hickman68@verizon.net Florida Apopka - Support Group Contact: Deborah Pfeifle Raising Our Celiac Kids (R.O.C.K.) - Apopka Chapter Apopka, FL 32712 Tel: (407) 880-6104 E-mail: dpfeifle@earthlink.net Coral Springs/Palm Beach - Support Group Contacts: Janna Faulhaber and Stacey Galper Raising Our Celiac Kids (R.O.C.K.) - Coral Springs/Palm Beach Chapter Tel: (954) 255-7855 E-mail: Staceynagel@paxson.com Odessa (Tampa) - Support Group Contact: Terri Willingham Raising Our Celiac Kids (R.O.C.K.) - Odessa Chapter Orlando - ROCK'n Celebration - Support Group Contact: Rose Parvaz Celebration, FL 34747 E-mail: rose.parvaz@celebration.fl.us Palm Beach gardens - Support Group ROCK'n Palm Beach Gardens Contact: Kimberly Wade Palm Beach Gardens, FL 33418 E-mail: tkcrw@comcast.net Tel: (561) 625-9005 Tampa - Support Group Contact: Melissa Ransdell Raising Our Celiac Kids (R.O.C.K.) - Tampa Chapter 14521 Nettle Creek Rd. Tampa, FL 33624 Tel: (813) 265-8105 Georgia Atlanta - Support Group Contact: Jeff Lewis, M.D. Children's Center for Digestive Health Care Raising Our Celiac Kids (R.O.C.K.) - Atlanta Chapter E-mail: jlewis@ccdhc.org Illinois Chicago - Support Group ROCK'n Chicago Contact: Alexandra Vavouliotis Tel: (847)-962-7244 E-mail: alexvav24@mac.com Dekalb - Support Group Contact: Audrey O'Sullivan Raising Our Celiac Kids (R.O.C.K.) - Stillman Valley Chapter Dekalb, IL Tel: (815) 756-2606 E-mail: Audrey08@aol.com ROCKn DuPage & Cook County Aleksandra de Leon -DuPage County E-mail: aleksandra.deleon@gmail.com Tel: 630-745-7429 Ilene Harris- Cook County E-mail: isf27@yahoo.com Tel: 847-222-9950 Moline - Support Group Contact: Lesley Lamphier ROCK'n Illinois (Moline) Moline, IL 61265 Tel: (309) 736-1507 E-mail: celiackids@mchsi.com Springfield - Support Group Land of Lincoln Celiac Support Group Contact: Joyce Hall Raising Our Celiac Kids (R.O.C.K.) - Springfield Chapter Springfield, IL Washington - Support Group Heart of Illinois Celiac Kids Contact: Samantha Young E-mail: info@hoiceliackids.com Indiana Henryville - Support Group Contact: Kristie Williams ROCK'n Indiana (Henryville) Henryville, IN 47126 Tel: (812) 294-1179 E-mail: kristiewilliamsrn@hotmail.com Indianapolis - Support Group Contact: Kelly Kurzhal ROCK’n Indianapolis Indianapolis, IN 46217 Tel: (317) 697-4933 E-mail: kellykurzhal@hotmail.com Mooresville - Support Group Contact: Cindy Holder Raising Our Celiac Kids (R.O.C.K.) - Mooresville Chapter 375 E. Countyline Rd. Mooresville, IN 46158 Tel: (317) 831-9871 E-mail: Holders2@comcast.net Iowa Des Moines - Support Group Contact: Lindsay Amadeo Raising Our Celiac Kids (R.O.C.K.) - Des Moines Chapter Des Moines, IA E-mail: llamadeo@yahoo.com Maryland ROCK'n Maryland Contact: Steffani Mykins Tel: (410) 626-1958 E-mail: stfine@comcast.net ROCK’n Maryland Contact: Lindsay Moe Mt. Airy, MD 21771 (443) 799-3432 E-mail: lindsaymoe@ymail.com Massachusetts Longmeadow - Support Group ROCK'n MA Contact: Christie Freda Longmeadow, MA 01106 E-mail: cfreda126@comcast.net Tel: (413) 567-5748 Somerset - Support Group Contact: Stacey Nasrallah ROCK'n Somerset (MA) Somerset, MA 02726 Tel: (508) 674-6211 E-mail: info@somersetrock.org Internet: http://www.somersetrock.org Michigan Ann Arbor - Support Group Contact: Anne MacDougald ROCK’n Michigan E-mail: anniemacdougald@gmail.com Macomb Township - ROCK'n MI Support Group Contact: Kimberly Fanelli Macomb Township, MI 48044 Tel: (586) 226-8480 E-mail: kfanelli@mac.com West Bloomfield - Support Group Contact: Gail Smoler Raising Our Celiac Kids (R.O.C.K.) - West Bloomfield Chapter 4358 Strathdale Court West Bloomfield, MI 48323 Tel: (248) 851-9451 E-mail: GailS63@aol.com Minnesota Minneapolis/St. Paul Support Group Contact: Lynda Benkofske Raising Our Celiac Kids (R.O.C.K.) - ROCK-Minneapolis/St. Paul Chapter 15470 County Rd. 35 Elk River, MN 55330 Tel: (763) 263-7679 E-mail: ljbenkof@ties2.net Mississippi Columbia - Support Group Contact: Beth Broom Raising Our Celiac Kids (R.O.C.K.) - South Mississippi Chapter 50 Wilks Road Columbia, MS 39429 E-mail: sbroom@dixie-net.com Missouri O'Fallon - Support Group Contact: Beth Anne Miller 7264 Sweetcider Lane O'Fallon, MO 63366 Tel: (636) 294-2037 E-mail: Frankbethm@aol.com Montana Billings - ROCK'n Montana Support Group Billings, MT 59102 Contact: Perrin Grubbs E-mail: perrin@bresnan.net Tel: (406) 655-7897 Nevada Reno - Support Group Contact: Carrie Owen Raising Our Celiac Kids (R.O.C.K.) - Reno Chapter Tel: (775) 857-2708 E-mail: Renorockgroup@yahoo.com New Hampshire Manchester - Support Group Contact: Michelle Ouellette ROCK'n New Hampshire Manchester, NH 03102 Tel: (603) 627-1831 E-mail: rocknh2006@gmail.com New Jersey Blairstown - Support Group Contact: Marla Benson Raising Our Celiac Kids (R.O.C.K.) - Blairstown Chapter Blairstown, NJ MBenson890@aol.com (808) 362-7752 Freehold - Support Group Contact: Elissa Carlin Raising Our Celiac Kids (R.O.C.K.) - Freehold Chapter Marlboro, NJ 07746 Tel: (732) 252-8309 E-mail: ElissaC75@aol.com Morristown - Support Group ROCK'n New Jersey Contact: Andrea Kitzis Smith Morristown, NJ 07960 Tel: (201) 965-7309 E-mail: akitsm@att.net Short Hills - Support Group Contact: Ellie Fried Raising Our Celiac Kids (R.O.C.K.) - North Jersey Chapter Tel: (973) 912-0253 New Mexico Albuquerque - Support Group Contact: Traci Shrader Tel: (505) 450-1156 E-mail: tashrader@msn.com New York Auburn - Support Group R.O.C.K.'n Auburn Contact: Nicki Hai Tel: (315) 252-2764 E-mail: jnhai@roadrunner.com Glens Falls Region - Support Group Contact: Lisa Fox Lake George, NY 12845 Tel: (518) 668-5838 E-mail: fox_lisa@hotmail.com ROCK’n Hudson Valley, NY Contact: Terresa Bazelow Thompson Ridge, NY Tel: (845) 609-7432 E-mail: HVNYROCK@aol.com Long Island - Support Group Contact: Christine Lauria East End Raising Our Celiac Kids (R.O.C.K.) E-mail: eastendrock@yahoo.com Internet: www.rockli.com Nassau County- Support Group Contact: Angela Silverstein Raising Our Celiac Kids (R.O.C.K.) - Lynbrook Tel: (516) 593-2904 E-mail: venusangmm1@optonline.net Nassau/Suffolk - Support Group Contact: Randi Albertelli Raising Our Celiac Kids (R.O.C.K.) - Long Island Chapter E-mail: rsquared31@optonline.net Contact 2: Jill Schneider Tel: (516) 551-4564 E-mail: jahms@verizon.net Rockland, NY - Bergen, NJ Raising Our Celiac Kids (R.O.C.K.) - Rockland, NY - Bergen, NJ Chapter Contact: Gabrielle Simon Telephone: (646) 342-6960 Email: nynjrockmom@yahoo.com Rome - Support Group Mohawk Valley R.O.C.K. (upstate New York) Contact: Rebecca Madeira Rome, NY Tel: (315) 337-7671 Upstate - Support Group ROCK'n Upstate New York Contact: Karen Dorazio Jamesville, NY 13078 Tel: (315) 469-8154 E-mail: kdorazio@twcny.rr.com Vestal, NY ROCK’n Vestal, NY Contact: Razi Lissy E-mail: raziher@gmail.com Western New York - Support Group Raising Our Celiac Kids (R.O.C.K.) - Western New York Chapter Buffalo / Niagara Falls NY Contact: Jeanette Yuhnke Tel: (716) 625-8390 Internet: http://www.glutenfreeinwny.com/WNYCeliacKids.php Westchester, NY ROCK’n Westchester, NY Contact: Erica Peltz E-mail: Eps2104@gmail.com Tel: (917) 612-4676 North Carolina Charlotte, Support Group Contact: Nikki Everett Raising Our Celiac Kids (R.O.C.K.) - Charlotte Chapter Huntersville, NC 28078 Tel: (704) 804-4090 E-mail: haircolorexpertise@hotmail.com Harrisburg - Support Group Contact: Linda Witherspoon 5018 Wynford Ct. Harrisburg, NC 28075 Tel: (704) 957-6100 E-mail: Linda.witherspoon@aol.com Stantonsburg - Support Group ROCK’n North Carolina Contact: Carrie Forbes Stantonsburg, NC 27883 Tel: (252) 238-3132 E-mail: gingerlemongirl@gmail.com North Dakota Fargo - Support Group Contact: Stacey Juhnke Tel: (701) 237-4854 E-mail: DSJuhnke@yahoo.com Ohio Akron - Support Group Contact: Sue Krznaric Raising Our Celiac Kids (R.O.C.K.) - Akron Chapter Akron, OH Tel: (330) 253-1509 E-mail: skrznaric@cs.com Akron - Support Group Contact: Therese Semonin Raising Our Celiac Kids (R.O.C.K.) - Akron Chapter CSA Chapter 111, S.O.S. Save Our Stomachs Cincinnati - Support Group Contact: Beth Koenig Raising Our Celiac Kids (R.O.C.K.) - Cincinnati Chapter Cincinnati, OH E-mail: BethKoenig@cinci.rr.com Tel: (513) 923-4435 Cleveland - Support Group ROCK’n Cleveland Contact: Tracey Lavine Solon, OH 44139 Tel: (216) 533-1285 E-mail: Tracey95@aol.com Toledo - ROCK'n Toledo Support Group Contact: Amy Kinkaid Toledo, OH 43615 E-mail: kinkaida@bex.net Tel: (419) 509-6913 Oregon Salem - Support Group Contact: Kristen Klay Raising Our Celiac Kids (R.O.C.K.) - Salem Chapter Tel: (503) 581-3884 E-mail: kristenklay@yahoo.com Pennsylvania Greenville - Support Group Contact: Fiona Garner Raising Our Celiac Kids (R.O.C.K.) - Greenville Chapter Greenville, PA Glenside - Support Group Raising Our Celiac Kids (R.O.C.K.) - Glenside Contact: Wilhelmina Green Glenside, PA 19038 Tel: (215) 756-2708 E-mail: Wilhelmina.green@gmail.com Greensburg - Support Group Contact: Martin Martinosky, Jr. Raising Our Celiac Kids (R.O.C.K.) - Greensburg Chapter Greensburg, PA Tel: (724) 834-3435 E-mail: ROCKchapter@aol.com Hanover - Support Group ROCK’n Hanover Contact: Melissa Panzer Hanover, PA 17331 Tel: (717) 633-1667 E-mail: Glutenfree4life@live.com Harrisburg - Support Group Gluten Intolerance Group of Harrisburg Harrisburg, PA Tel: (717) 520-9817 Lancaster/York - Support Group Contact: Janelle Gregory Tel: (717) 687-8586 E-mail: janellegregory@verizon.net Lansdale - Support Group ROCK Bucks Montgomery Contact: Holly and Steve Staugaitis Lansdale, PA 19446 Tel: (215) 997-2706 E-mail: hollystaugaitis@gmail.com South Carolina Charleston - Support Group Contact: Cathy Leeke Lowcountry R.O.C.K. Tel: (678) 637-3277 E-mail: cwleeke@yahoo.com Clover - Support Group Contact: Lauretta McInnis Raising Our Celiac Kids (R.O.C.K.) - Clover Chapter Tel: (803) 222-5143 E-mail: laurettamcinnis@gmail.com Easley - Support Group Contact: Laura Armstrong Raising Our Celiac Kids (R.O.C.K.) - Easley Chapter Easley, SC Tel: (864) 850-0344 Lexington - Support Group Contact: Gail Fox Raising Our Celiac Kids (R.O.C.K.) - Lexington Chapter Lexington, SC 29072 Tel: (803) 957-7658 E-mail: gailfox@sc.rr.com Tennessee Nashville - Support Group Contact: Janet Lowery Raising Our Celiac Kids (R.O.C.K.) - Nashville Chapter Tel: (615) 758-2674 Woodlawn - Support Group Contact: Shantal Green Woodlawn, TN Tel: (931) 648-2289 Texas Austin - Support Group Contact: Frances Kelley ROCK'n Austin - Alamo Celiac GIG Austin, TX 78739 E-mail: fkelley@austin.rr.com Tel: (512) 301-2224 Dallas/FortWorth - Support Group Contact: Kelly LeMonds, Leader Raising Our Celiac Kids (R.O.C.K.) - Wylie Chapter 1821 Spinnaker Way Drive Wylie, Texas 75098-7855 Tel: (972) 442-9328 E-mail: leader@dallasrock.org Internet: http://www.dallasrock.org Dallas/FortWorth - Support Group Contact: Diane McConnell Raising Our Celiac Kids (R.O.C.K.) - Dallas/FortWorth Chapter Tarrant County, TX Tel: (817) 849-8646 E-mail: fortworthrock@swbell.net Houston - Support Group Contact: Janet Y. Rinehart, Chairman Houston Celiac Sprue Support Group Raising Our Celiac Kids (R.O.C.K.) - Houston Chapter 13722 Ashley Run Houston, TX 77077-1514 Tel: (281) 679-7608 E-mail: txjanet@swbell.net Internet: http://www.csaceliacs.org/ Houston - Support Group Contact: Faye Sallee Raising Our Celiac Kids (R.O.C.K.) - Houston Chapter 14830 Sagamore Hills Houston, TX 77082 Tel: (281) 496-9166 Houston - ROCK'n Houston Support Group Comtact: Monica Ryan Houston, TX 77025 Tel: (713) 667-1963 E-mail: Mwryan@ipa.net Lubbock - Support Group Contact: Beth Trostle ROCK'n Lubbock Tel: (806) 794-5917 E-mail: calvintrostle@nts-online.net San Antonio - Support Group Contact: Rose and Michael Stevens Raising Our Celiac Kids (R.O.C.K.) - San Antonio Chapter San Antonio, TX Tel: (210) 495-7757 E-mail: info@kidceliac.com Internet: http://www.kidceliac.com Victoria - Support Group Contact: Julie Bauknight Raising Our Celiac Kids (R.O.C.K.) - Victoria Chapter Victoria, TX 77901 Tel: (361) 572-9252 Utah Holladay - Support Group Contact: Cathy Snowball ROCK’n Utah Holladay, UT 84121 E-mail: kileyannsmom@hotmail.com Ogden - Support Group Contact: Eileen Leatherow Raising Our Celiac Kids (R.O.C.K.) - Ogden Chapter Ogden, UT Virginia Ashburn - Support Group Keith Bird Tel: (703) 348-7607 rock@birdmk1.plus.com Bristow - Support Group ROCK’n Bristow Contact: Michael and Elizabeth Brown Bristow, VA 20136 Tel: (703) 753-9161 E-mail: 2xx1xy@comcast.net Fredericksburg - Support Group ROCK’n Fredericksburg Contact: Kathy Paz-Craddock Tel: (703) 507-0609 E-mail: kalalilys@gmail.com Paeonian Springs - Support Group Raising Our Celiac Kids (R.O.C.K.) - Paeonian Springs Becky Shore Tel: (571) 252-0036 E-mail: zoo2u@comcast.net Virginia Beach - Support Group Contact: Cynthia Olson E-mail: glutenfreemom@hotmail.com Washington Bellingham - Support Group Contact: Jean McFadden Layton ROCK'n Washington Bellingham, WA 98229 Tel: (360) 734-1659 E-mail: glutenfreekids@yahoo.com Bothell, WA - Support Group Contact: Lynn Crutcher Rock'n Washington Bothell, WA 98011 Tel: (425) 205-1327 E-mail: gfkids1@yahoo.com Poulsbo - Support Group Contact: Tim & Dawn Simonson Raising Our Celiac Kids (R.O.C.K.) - Poulsbo Chapter Poulsbo, WA 98370 Tel: (360) 779-9292 E-mail: timsimonson@csi.com Seattle - Support Group Contact - Irina Risuhina Raising Our Celiac Kids (R.O.C.K.) - Seattle Chapter E-Mail: iris510@hotmail.com Spokane - Support Group Contact: Jennifer Fancher ROCK'n Spokane, WA Spokane, WA Tel: (509) 891-7250 E-mail: nelsonfancher@live.com Vancouver - Support Group Contact: Theressa Rachetto Vancouver, WA 98662 Tel: (360) 713-1504 E-mail: theressarachetto@gmail.com Yakima - Support Group ROCK’n Yakima, WA Contact: Shanta Gervickas Tel: (509) 965-1130 E-mail: Shanta@network7.com West Virginia Hurricane - Support Group Contact: Karen Daniel Raising Our Celiac Kids (R.O.C.K.) - Hurricane Chapter 340 Green Acres Dr. Hurricane, WV 25526 Tel: (304) 757-0696 E-mail: krdaniel@suddenlink.net Wisconsin DePere - Support Group Contact: Pam Rourke Tel: (920) 339-7867 E-mail: mrourke@new.rr.com Jackson - Support Group Contact: Yvonne Schwalen Raising Our Celiac Kids (R.O.C.K.) - Jackson Chapter E-mail: trainman280@netzero.net R.O.C.K. Chapters in Canada Alberta ROCK 'n Olds Olds, Alberta, Canada Amy Smart 403-415-5789 asmart@telus.net
  9. Celiac.com 12/27/2005 - Funding for NIH (including the NIDDK which conducts critical research into Celiac disease) in next years Labor-HHS Appropriations Bill is only slightly above last years levels-inadequate to compensate for inflation and the development of promising research. However, Congress is also in the process of approving a 1% across-the-board cut to ALL discretionary programs (except Veterans programs)-including NIH. This cut will decrease the NIH funding level for the first time in a generation and put in mortal jeporady the research that can lead to treatments and eventually a cure for Celiac disease. Not only will this cut affect the work of NIH for this year, but will set back medical research into Celiac disease for many years to come. Because the Celiac community relies heavily on research conducted by NIH, it is critical that individuals speak out against this bill. Because of the low NIH funding, the Celiac community must demand that the Labor-HHS appropriations bill be rejected, and a new bill that addresses the funding needs of NIH be enacted. The bill has passed the House of Representatives and awaits a vote in the Senate. If you have not yet contacted your Senator to ask for their no vote on this bill, please do so now. If you have, please do so again. To reach your Senator, call the Capitol switchboard at (202) 224-3121 and ask to be connected with the offices of your states Senators. The progress of vital research for Celiac disease and countless other ailments and conditions lies in the balance. Please do your part and speak out! Jonathan R Pawlow, Jr. Digestive Disease National Coalition 507 Capitol Court, NE, Suite 200 Washington, DC 20002 202-544-7497 202-546-7105 (fax) Pawlow@HMCW.org NIH Appropriations Update Continue to urge congress to support biomedical research in the final fiscal year 2006 labor-hhs-education appropriations bill The United States Senate was expected to vote on the fiscal year 2006 appropriations bill for the Departments of Labor, Health and Human Services, and Education last week. The health communitys advocacy in opposition to the Labor-HHS-Education appropriations bill had an impact in the Senate, as Senate Majority Leader Bill Frist (R-TN) set aside a vote on the bill. However, on Sunday, December 18th, the House passed the fiscal year 2006 Defense appropriations bill, which included a 1% reduction in appropriations for all federal programs excluding veterans assistance. This means the budget for the National Institutes of Health (NIH) would receive a cut in funding, leaving the budget below fiscal year 2005 levels, if the Senate approves the fiscal year 2006 Labor-HHS-Education appropriations bill. The Senate is expected to vote this week, as early as today, on the bill. Requested Action: Please contact your senators immediately and urge them to vote no on the Labor-HHS Appropriations Conference Report. in addition, ask them to restore funding for NIH in the bill to the level originally called for in the senate version of the legislation ($29.3 billion). To contact your senators, please visit www.senate.gov or call the U.S. Capitol switchboard at (202) 224-3121.
  10. Celiac.com 04/08/2009 - A study published in Journal of Insurance Medicine has delineated clear economic benefits to diagnosing celiac disease on a national level using a managed-care approach. A team of researchers based at Columbia University Medical Center's Celiac Disease Center recently set out to estimate the rate of celiac disease diagnosis and assess the economic benefits of diagnosis by reviewing retrospective cohort studies from a national managed-care-population database. The research team was made up of Peter H. R. Green, Alfred I. Neugut, Afzal J. Naiyer, Z. Collette Edwards, Susan Gabinelle, and Vijit Chinburapa. Using the data, the team isolated cases of newly diagnosed with celiac disease. They also isolated 3 control groups that included people without a diagnosis of celiac disease, but who showed 1, 2, or 3 or more symptoms common to the disease. They used claim, incident, and eligibility information from 10.2 million managed care individuals across America from January 1999 and December 2003. They quantified and compared direct standardized relative value based (RVU) medical cost and use of medical services across the whole of the 4 study base. What they found was that the rate of newly diagnosed cases of celiac disease had increased more than 100% over the study period. The celiac disease group showed substantial overall shrinkage in direct standardized medical costs compared with the control subjects. RVU-based medical costs for the celiac subjects were 24%, 33%, and 27% below cohort 1 (p,0.05), 29.0%, 38%, and 24% below cohort 2 (p,0.05), and 38%, 33%, and 31% below cohort 3 (p,0.01) for the 12-month, 24-month and 36-month post-diagnosis periods, respectively. The reduced costs correlated with a reduction in office visits, lab, diagnostic, imaging, and endoscopy procedures compared to the 3 other cohorts over the 3-year follow-up period. The researchers found increased rates of celiac disease diagnosis, which was tied directly to a substantial reduction in direct standardized RVU-based medical costs and use of selected health care services over the period of the study. Journal of Insurance Medicine 2008;40:218–228
  11. The following report was prepared by Ann Whalen, celiac, and editor/publisher of Gluten-Free Living , which is a bimonthly newsletter for celiacs - Gluten-Free Living, PO Box 105, Hastings-on-Hudson, NY 10706. On March 10th, more than 20 members of the celiac community and celiac disease specialists (see list at end) attended a meeting of the Digestive Diseases Intra-agency Coordinating Committee, a part of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The meeting, held to update the current status of Celiac Disease, was chaired by Jay Hoofnagle, M.D., Director of the Division of Digestive Diseases and Nutrition at the NIDDK. At the meeting, presentations were made by Martin Kagnoff, M.D., Joseph Murray, M.D., Alessio Fasano, M.D., and Frank Hamilton, M.D. Dr. Kagnoff is a gastroenterologist and Professor of Medicine at the University of California, San Diego. He spoke about his research into the genetics of Celiac Disease, focusing on the pathogenesis. Dr. Kagnoff is well known for his research into the genetics of Celiac Disease, and several of his studies have been funded by the NIH. Dr. Murray, Associate Professor of Medicine and clinician at the University of Iowa Hospitals and Clinics, described his experience with Celiac Disease both in Iowa and in Ireland, noting that his interest in celiac disease is clinical. He emphasized what he called the Classic II symptoms, meaning the actual symptoms patients have today and not the Classic symptoms many doctors may be familiar with. He said the rate of diagnosis is proportional to suspicion. Dr. Murray described the celiac disease experience at the University of Iowa from 1985 to 1997, presenting statistics that indicated a steep increase in diagnosis. At our institution, Celiac Disease is an adult disease, he said, and is now seen as frequently as Crohns Disease. Anticipating the question, Why look for Celiac Disease?, Dr. Murray gave his reasons: preventing lymphoma and osteoporosis, as well as resolving fatigue and nonspecific symptoms and shortening the current significant delays in diagnosis. Dr. Fasanos presentation was called Where Have All the American Celiacs Gone? He described what has happened in the field of celiac disease in various parts of the world, including some parts of the United States, but emphasized the European experience. Dr. Fasano noted that plans are already underway in Italy to screen all seven-year-olds in 1999. Dr. Fasano explained why an epidemiology study is critically needed in this country. He pointed out the benefits of such a study for four groups: The American health care community: lower health care costs, increased awareness of celiac disease and more knowledge of its protein manifestations in the US Participating physicians: publications, more patients and increased credibility. The American people: the prevalence will be established and celiac disease will be diagnosed more quickly. Celiac Patients: free screening of first-degree relatives, federal support for dietary and drug regulations, an improved food supply, stronger local support groups and more funding for celiac research. Dr. Fasano added that such a study, whatever its findings, would end in a win-win situation for everyone. If the study shows that celiac disease is underestimated in this country, patients will benefit as physicians begin looking for the problem with the knowledge that they might well find it. If the study shows celiac disease is indeed rare in the United States, its even more exciting because we will be able to figure out why. Dr. Hamilton, chief of the Digestive Diseases Program Branch at the NIDDK, briefly described the celiac disease research, to date, that has already been funded by the NIH. He said $1.4 million has been granted for such research, adding that over the last five years, we have seen growth in the funding of Celiac Disease. He said he was pleased funding has increased, and felt a lot of work has to be done. Dr. Hamilton ended by saying, Todays meeting will serve as an impetus for a partnership between the National Institutes of Health, academe, and the lay groups to foster more research. He added that it was important for the investigators and support group representatives present at the meeting to get the word out, referring to information about Celiac Disease. These talks were followed by a round table discussion, between the members of the committee and the presenters. Later, audience comment was invited. The committee showed an interest in the current adult nature of the disease, the changing symptoms, current testing methods, and identification of the most critical research needs. Patients who spoke were anxious to let the committee know what they felt were the important concerns in the real world. At the end of the meeting, Dr. Hoofnagle said his division will prepare a short, pithy plan, then present it to Drs. Kagnoff, Murray and Fasano. He noted that the important issues are pathogenesis, delivering the message to physicians, clinical research issues and pediatric health concern. Some Quotes from the Meeting Elaine Monarch: There is a general lack of knowledge, awareness and interest in Celiac Disease among the medical profession. We celiacs can go for years with substantial symptoms but not diagnosis...The cost to the medical community is enormous. Joseph Murray, M.D.: There is more than one gene involved in Celiac Disease. Most Europeans are homogenous. Here we have a mongrelized population. What happens when you mix? How much does it change? Our mongrelized population may be at risk at a later age. Martin Kagnoff, M.D.: The issue of other genes is not at all clear. Like Joe (Dr. Murray), I see adult celiacs. Their time delay to diagnosis is not exaggerated, but what is striking is the lack of knowledge of doctors, even at the University of California. They really are not aware of this disease. Alessio Fasano, M.D.: We receive 10-15 calls a day. The vast majority are self diagnosed. They say, I know more than my gastroenterologist. Peter Green, M.D.: We need to emphasize education of gastroenterologists. At my institution (Columbia-Presbyterian Medical Center in New York City), doctors are not used to looking at the duodenum...We need to educate many levels of the medical community and tell them, If you dont recognize something, take a biopsy. Sue Goldstein: Im concerned about the people who have not yet been diagnosed and the reasons why a physician wont consider Celiac Disease. It all boils down to, its rare and you cant have it. In addition to the speakers, the following were among those who attended: Phyllis Brogden, celiac, founder and chairperson of the Greater Philadelphia Celiac Sprue Support Group. Winnie Feldman, celiac, Celiac Disease Foundation Kenneth Fine, M.D., gastroenterologist/ researcher at Baylor University Medical Center in Dallas. Al Fornace, M.D., celiac, National Cancer Institute Sue Goldstein, celiac, founder and advisor, Westchester Celiac Sprue Support Group Peter Green, M.D., clinician/researcher at Columbia-Presbyterian Medical Center in New York City. Joanne Hameister, celiac, former chairperson, Western New York Gluten-Free Support Group Ivor Hill, M.D., clinician/researcher at Bowman Gray School of Medicine, Winston-Salem, North Carolina. Beth Hillson, celiac and proprietor of the Gluten-Free Pantry. Karoly Horvath, M.D., clinician/researcher at the University of Maryland School of Medicine in Baltimore. Marge Johanamen, celiac, CSA Kentucky state coordinator Pam King, University of Maryland Bob Levy, Celiac Research Foundation Ruth Levy, spouse Jax Lowell, celiac and author of Against the Grain Elaine Monarch, celiac, founder and Executive Director of the Celiac Disease Foundation Selwyn J. Monarch, Board of Directors, CDF Diane Paley, celiac, governing board CSA/USA Michelle Pietzak, M.D., pediatric gastroenterologist at Childrens Hospital, Los Angeles Connie Tur, celiac, president Greater Louisville Celiac Sprue Support Group
  12. Celiac.com 11/28/2006 - The National Foundation for Celiac Awareness (NFCA) is thrilled to announce that CNN Newsroom Anchor Heidi Collins has signed on as the foundation’s official spokesperson. As a fellow celiac and a member of the news media, Heidi will bring a wealth of knowledge to NFCA. Every weekday, Heidi anchors CNN Newsroom from 9am-Noon EST. Previously she has provided in-depth reports for Anderson Cooper 360°, Paula Zahn Now, and The Situation Room, as well as served as a news anchor for CNN’s American Morning. Heidi has received three Edward R. Murrow awards as well as an Associated Press Award in the best documentary category. Heidi’s journey with celiac disease began shortly after she finished graduate school and began her first television job as an anchor at a station in Wichita Falls, Texas. About one year after she started this job, she learned she was pregnant, news that thrilled both Heidi and her husband Matt. The couple kept the secret for quite some time, but finally six months into the pregnancy, Heidi announced on air that she would be having a baby. Sadly, just a few weeks after announcing her pregnancy, Heidi lost the baby. She received very little explanation from her doctors about why the tragic loss had occurred other than from fetal demise. During Heidi’s next television job in Colorado Springs, she developed a near fatal blood clot in her leg. After four months in the hospital and arterial bypass surgery, a vascular surgeon told Heidi she would never be able to have children. The doctor explained that her blood vessels would not be able to handle the strain of a pregnancy. Heidi and Matt were devastated. Heidi’s next television job brought the couple to Denver, where after a lengthy search, they found a high-risk obstetrician who felt that having a child would not be impossible after all. Nine months later, two injections a day of blood-thinner and constant observation by a team of physicians, Heidi gave birth to her son Riley. She says it was the happiest day of her life. However, Heidi continued to deal with stomach pains, severe headaches and anemia. The constant health issues grew nearly intolerable as she moved to CNN’s New York office. She continued visiting doctors until finally after 15 years of one health problem after another, her general practitioner diagnosed her with celiac disease. With one simple blood test, Heidi had found a diagnosis that would allow her to work toward a cure for her chronic medical conditions and an answer as to why her pregnancy had failed. “Through being the spokesperson for the National Foundation for Celiac Awareness, I hope to significantly reduce the time it takes for people with celiac disease to be accurately diagnosed and empower people to reclaim their health and restore their lives,” Collins said. “It is through the power of my personal story and my ongoing struggle with celiac disease that I hope to encourage people to get tested and make a positive change in their lives.” The National Foundation for Celiac Awareness (NFCA) is a non-profit organization dedicated to raising celiac awareness and funds for research. NFCA is made up of professionals, medical specialists, and volunteers—all dedicated to working with leading researchers around the world to better understand celiac disease. Visit www.celiaccentral.org or call 202-904-7865 for further information.
  13. Celiac.com 08/31/2006 - On July 27, 2006, Representative Nita Lowey (D - NY) introduced H.Con.Res. 457, which, if passed, would recognize the month of May as national “Celiac Awareness Month.” The bill also requests an increase in federal funding for celiac disease research. Rep. Lowey was the driving force in Congress in support of the Food Allergen Labeling and Consumer Protection Act that passed in 1994, which requires food manufacturers to list the top eight allergens on their products’ ingredient labels. Celiac.com supports Rep. Lowey in her efforts to raise celiac disease awareness, and asks you to get involved. Please contact your representatives in congress and ask them to support H.Con.Res. 457—to do so simply visit: http://capwiz.com/celiac/issues/bills/?bill=8945821
  14. Celiac Disease Foundation is the nation’s leading disease advocacy organization for celiac disease and non-celiac gluten/wheat sensitivity. We drive diagnosis, treatment, and a cure through research, education, and advocacy to improve the quality of life for all those affected. Through iCureCeliac®, our national registry dedicated to patient-centered research, we collaborate with researchers, clinicians, and industry to better understand, and ultimately cure, celiac disease. Since our founding in 1990, Celiac Disease Foundation continues to champion many battles: federal recognition of celiac disease and labeling standards for gluten-free foods, improved diagnostic tools, widespread patient and provider education, access to mainstream gluten-free products, and the need for better treatments and a cure. 20350 Ventura Blvd. Suite 240 Woodland Hills, CA 91364 Tel: (818) 716-1513 E-mail: cdf@celiac.org Internet: http://www.celiac.org
  15. Dr. Kelly, who is a refractory sprue specialist, had interesting insights into Celiac Disease. He first described once having a patient say to him that eating at a restaurant or food take out is the gastronomic equivalent of promiscuous and unprotected sex because (you) dont know where food has been, who else its been with, and what you might get from it. Dr. Kelly explained that his job when seeing a patient with possible Refractory Sprue is to first confirm that the patient really has Celiac Disease and is adhering to a gluten-free (gluten-free) diet. He explained that some patients would rather prefer an iron shot than adhere to a gluten-free diet and that sensitivities vary which removes another drive to say gluten-free; however, if symptomatic, he has found that the patient has the motivation to adhere. Hes even had to recruit and train dieticians to take an interest in Celiac Disease. He said that Celiac Disease or Gluten Sensitive Enteropathy is driven by activated lamina propria T-cells to whom gliadin is being presented through their T-cell receptors. In Refractory Sprue, he said that the cells are evident at intraepithelial lymphocytes rather than lamina propria lymphocytes and they no longer require gluten in order to be driven. So, theyre on auto-pilot. He emphasized that this is a rare disease and advised that doctors get a competent dietician to help patient adhere to diet. If the concern is that the patient is adhering but is not responding, Dr. Kelly advised doctors to think of other disorders masquerading as Celiac Disease, especially if patient is IgA, EmA (anti-endomysial) negative or if not HLA DQ2 or DQ8 (common Celiac genes) positive. He added that not every flat mucosa consistent with Celiac Sprue is Gluten Sensitive Enteropathy but that there can be a differential diagnosis such as cow protein intolerance. He said that there are unusual immunologic disorders that can be mistaken for sprue or refractory sprue. He said that doctors should consider these if the patient was not IgA endomysial or human tTg (transglutaminase) antibody positive at diagnosis. He explained that the positive predictive value of those tests are so strong that really its in some ways has a higher positive predictive value than even biopsy that you dont get very, very if any false positives at least by the immunofluorescence assay. So, if theyre negative at diagnosis considering other possibilities and this is one instance where HLA typing actually may be clinically useful if you have a patient you think has Celiac Sprue but isnt behaving or responding as you would expect with a gluten free diet and you ask do they really have Sprue. If they are HLA DQ2/DQ8 negative, then the likelihood of them having gluten sensitive disease is much, much lower. He said that serology (blood tests) were helpful but not be relied upon. He said that IG antibody levels against gliadin, or tissue transglutaminase tend to drop fairly quickly usually within 2 to 3 months provided they (patient) were positive to begin with. ...The IgG takes much longer so it tends to be less useful and of course, if they are IgA deficient, they wont be IgA positive to begin with and you cant use then. Even if their antibody levels are high to begin with, and remain high, that to me means that theyre still exposed to the antigen and they still have T-cells. Their lamina propia T-cells are still being driven by the antigen. But if theyre negative, Im afraid that its not particularly sensitive and low levels of gluten exposure may result in symptoms and poor response would not necessarily be identifiable by antibody.... Dr. Kelly said that patients with subtle manifestations of Celiac Sprue who have been previously diagnosed with irritable bowel or host of other disorders are now being more frequently seen. He said that there has been a lot of discussion in the past year about Celiac Sprue being misdiagnosed as Irritable Bowel Syndrome. Dr. Kelly also described the circumstance that patients with Celiac Sprue show improvement both serologically (blood) and histologically (biopsy) but their symptoms persist. He said that doctors need to be aware that just because a patient has gluten sensitive enteropathy doesnt mean they cant get another gastrointestinal disorder. He gave examples such as microscopic colitis and what he called a classical association, hyperthyroidism, or something else which could also cause diarrhea and weight loss. Dr. MacDonald, a celiac specialist, discussed new insights into the pathogenesis of Celiac Disease. Dr. MacDonald discussed primarily the role that other factors besides the DQ2 (gene) molecule, control the T-cells in the gut mucosa which produce the lesion or flat mucosa. In the genesis of the lesion, he explained how the T-cell immune response in the gut wall results in a gut shape of tall villi and short crypts which results in an increase in mucosa volume with flat mucosa and an increase in mucosa thickness. My husband, a PhD immunologist, interpreted this for me; He said that imagine the villi are the hill and the crypts are the valley. The valley is where things grow. The oldest cells are at the tip of the hill and as cells mature, they get transported up the hill. As damage occurs, the hill gets chopped down, valleys get deeper making more area for cells to replicate. Dr. MacDonald assumed that because the epithelium is turning over so fast in Celiac Disease that the lamina propria, the shape of the gut itself would be turning over, but actually the data says otherwise. The flat mucosa isnt turning over at all, ... a rather stable shape, its not really dynamic, its remodeled. He said that putting Celiacs on a gluten free diet may take them a long time to get better, because it takes a long time for this to go back because this is actually stable, its remodeled.... Dr. MacDonald explained that gliadin peptides associate with DQ2 and DQ8 molecules putting themselves into the grooves to be seen by T cells. However, he gave an instance where a particular gliadin peptide doesnt fit well into the pockets of DQ2 to be seen by T cells. Tissue Transglutaminase or Ttg deamidates (removes chemical groups on certain amino acids and allows peptide to bind to DQ2) this peptide in terms of glutamine into glutamic acid, gives a negative charge, fits very well into pocket, and binding increases 100 fold. Tightness of the binding ... controls the specificity and strength of the T-cell response. Dr. MacDonald also described the case of a woman with cancer who was treated with interferon. He said that she had the endomysial antibodies, was DQ2 positive, and had Celiac Disease; however, he cited that the reason why the Celiac Disease was not found earlier was that interferon alpha/gamma used to treat the cancer may have precipitated clinical Celiac Disease. He added that her son was later diagnosed with Celiac Disease as well. It was also eluded to that a viral infection like a gastrointestinal flu would stimulate or produce interferon alpha. Dr. Alessio Fasano from the Center for Celiac Research at the Univ. of Maryland also explained that its not just the gluten antigen and genes (i.e., HLA DQ2 or DQ8) but an added element like that alluded to by Dr. MacDonald such as a viral infection which can result in Celiac Disease. Dr. Fasano described a study performed on North African children who were thought to have symptoms resembling infectious disease with symptoms like anemia and diarrhea were found to have Celiac Disease at the rate of 1 in 18. He said because they have a high consumption of grains and seem to carry a high frequency of the genetic elements, he felt that non-profit organizations may intervene to help institute a gluten-free diet in this Celiac population. Dr. Fasano mentioned a study performed in Southern California which found Celiac Disease in 2 to 4% of people with symptoms or associated diseases and 5% in family members of Celiacs. Dr. Fasano stated that the overall prevalence is 1 in 266 which he said on a global scale, by far this is the most frequently genetic disease of human kind. Fasano said that in the 1970s, it was thought Celiac Disease was confined to the pediatric population but that since 1998 there has been a surge in adult versus child cases. He believes that the disease may have been overlooked in adults because adults have more atypical symptoms like anemia, osteoporosis, abortion that would NOT see a Gastroenterologist but would see an internist, reproductive OBGyn, endocrinologist, etc. Dr. Fasano said that if the iceberg idea is diarrhea, weight loss, abdominal symptoms, you will surely crash into the iceberg, but he proposed, what about the people who have joint pain, constipation, fatigue, and so on. He said that if you are willing to see the monument of the problems, you have to get down under the water because in the vast majority of cases, Celiacs will not see a Gastroenterologist and that doctors must be aware of those under the water. Dr. Fasano during the question and answer session listened to a doctor in the audience describe a patient with diarrhea and schizophrenia whose diarrhea and schizophrenia resolved when put on a gluten-free diet. The doctor didnt know what to do with the patient but explained that the patients background, being of Irish descent, gave him a red flag into the possibility of Celiac Disease. Dr. Fasano in response described how there can be a change in behavior such as attention deficit disorder, depression, and schizophrenia. He described a theory that the epitopes of gluten could cross the intestinal barrier, cut into the bloodstream, and cross the blood brain barrier. He believes that there is a clear association between Celiac Disease and change in behavior.
  16. Summary prepared by Nancy Kloberdanz as a joint effort of all the national celiac organizations GIG, CDF, CSA/USA, and ACS. Celiac organizations and patients from several states recently attended two very important educational lobbying efforts in Washington DC. The Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF), American Celiac Society (ACS), and Celiac Sprue Association/United States of America (CSA/USA) were formally represented, and were advocates for the Digestive Disease National Coalition (DDNC) and National Institute for Arthritis, Musculoskeletal and Skin Diseases (NIAMS). Our goals in lobbying were twofold. First to encourage the Senators and Representatives we visited to support a 16.5 % increase in the Budget for NIH (National Institutes of Health) and to provide $405 million to NIAMS in fiscal year 2001. This money is important in efforts to double the NIH budget by 2003. NIH is the major funding organization for research that is supported by government grants. Often research that may not seem directly linked to celiac disease and dermatitis herpetiformis, is beneficial to our disease and others. A good example is the Genome Project. Genetic mapping will help researchers refine their research and hopefully speed efforts to find causes and cures for diseases. The second goal was to increase awareness and educate about our particular disease. We accomplished this very well. On March 19, 2001, celiac disease had the largest patient representative group at the DDNC, and reached nearly 20 representatives. Members of DDNC and NIH were very impressed by our representation of celiac disease. The following week we had 3 representatives attend the NIAMS Advocacy efforts. While visiting our Congress people we had the opportunity to tell our stories and explain how legislative decisions impact us individually, as well as share some facts about celiac disease/DH. Fact Sheets and other materials were left in each congressional office that we visited. DDNC represents many gastrointestinal disease organizations. We are pleased that all the national celiac organizations are members of this coalition. NIAMS and CPA-SDR (Coalition of Patient Advocates for Skin Disease Research) are the coalition groups that the Gluten Intolerance Group (GIG) is a member of, in order to represent persons with dermatitis herpetiformis. Work by coalitions such as these is very important. These coalitions are strong forces with great influence in the medical areas they represent. Patient advocacy work is important, however, you should also know that nonprofit groups (501c3) are severely limited by law in the amount of funding that can go toward advocacy work. In this regard we need your help, please: Write to your Congress people about your disease and encourage them to support the NIH budget increase. Send them copies of the Fact Sheet. Visit them when they are at home (usually weekends and Mondays). Join the national celiac organizations in representing a united, common voice. We are strongest when we speak as one. The more voices saying the same thing the better. Let your national group(s) know you want to participate in these activities. The Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF), American Celiac Society (ACS), and Celiac Sprue Association/United States of America(CSA/USA) were formally represented. DDNC and NIAMS groups are often invited to participate in advocacy work throughout the year. Plan to come to Washington DC next year. Often Congress people are very busy and sometimes selective in whom they see. They want to hear from their constituents. An example was a Senator from California who wanted to see constituents from her district. If there had not been a representative from California on a team, that senator would not have heard about Celiac Disease. We need representatives from as many states as possible. Although, our lobbying efforts are at the mercy of the Congress schedule, these events often take place in March or April. Offer to testify. Testifying before Budget and Health Committees is by written invitation only. First we must write letters asking permission to testify and then wait to be approved. It is a wonderful experience to express our story in this manner. Children and people severely affected by the disease are the most influential.
  17. The Gluten Intolerance Group of North America, also known as GIG, is a 501©(3) non-profit organization funded by private donations including the Combined Federal Campaign, United Way Designated Giving, Employer Matching Funds; proceeds from memberships, the sale of products and our educational resources. We rely on your contributions, which are tax deductible. 85% or more of our revenue is used to support our programs. GIG is at the forefront of innovative action and is respected globally as a powerful leader in the celiac community. GIGs volunteers, staff, and Board are knowledgeable and our materials and resources are credible. Our Mission is to provide support to persons with gluten intolerances, including celiac disease, dermatitis herpetiformis, and other gluten sensitivities, in order to live healthy lives. GIG Branches help to fulfill GIGs mission on a local and regional level through programs tailored to their community. GIG VISION The vision of the Gluten Intolerance Group of North America is one of mutual support, acceptance, and respect for all persons living with gluten intolerances and working with this community. GIG envisions a united gluten intolerant community in which all persons feel they are healthy, are positively nurtured to live life to the fullest, and are involved and contributing citizens. GIG PROGRAMS FULFILLING THE MISSION GIG fulfills its mission of supporting persons living with gluten intolerances through programs directed to consumers, health professionals and the public. GIGR programs provide: Support and education Awareness and advocacy Research awareness and support GIG is dedicated to providing accurate, scientific, evidence-based information. Cynthia Kupper, RD, celiac disease, Executive Director 31214 - 124 Ave SE Auburn WA 98092 Phone: 253-833-6655 Fax: 253-833-6675 Web sites: www.gluten.net; www.GFCO.org; www.GlutenFreeRestaurants.org Email: info@GLUTEN.net