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Found 22 results

  1. Warm Greetings... I'm seeking support or advice, as well as some words from the wise. D-day has come: I'll receive my diagnosis in about 4 hours. I've known for a few months now that Celiac disease is likely the culprit to what ails me, so this isn't new news to me. I should feel relieved. Yet...I'm suddenly feeling sad, anxious, and overwhelmed. I've been soooo, soooo sick for over a year now (on top of having a very rare debilitating condition called Isaac Syndrome...AND other crud). I'm beyond ready to reclaim my life! Like every other one of you beautiful people who are part of this pristine community known as Celiacs, I went through a host of testing; the last of which was the endoscopy w/ biopsies. After said endoscopy [and whilst showing me pictures of my innards], the doctor informed me that I have celiac sprue and all sorts of other fun G.I. issues that I was completely oblivious to. He explained that in spite of the appearance of my duodenum, a Celiac diagnosis couldn't be affirmative until the biopsy results were in. Being one who always puts her infinite wisdom to good use (snicker, snicker), I decided to view my biopsy results online, reasoning that it would give me a chance to better prepare some questions for the specialist. Needless to say, that may be what cost me this night of sleep. I absolutely, positively have Celiac. I was perfectly fine knowing that this was a very high probability just yesterday. So why am I upset? I've had months to come to terms with this and be ready. Yet something about confirmation made me have what the docs may call an 'adverse reaction.' There's no logic behind this (my mental state of angst). Okay...now that you've made it this far, I pose the same question I entitled this post: If you could go back to the day you were diagnosed, what is some advice that you'd give to yourself, knowing now what you didn't know then? Any advice would be appreciated as I'm truly stressing out. Thank you! ~ Shann
  2. Hello! I am new here, but I have a rather lengthy story and was looking to receive some feedback as to whether or not I am in the right place. Basically, two years ago my weight began to plummet despite consistent (albeit low) calorie intake and exercise routine that I had been stable at for several years. I am a 25 year old female. Diet was the same, exercise was the same, but I dropped from my already slightly low 125lbs. (at 5'9") maintenance weight to 90lbs. in five months! By greatly increasing calories, I have managed to bring it up to 107, but for about a year now I cannot seem to get any higher than that. I get blood work done every three months because (despite high calorie diet and daily multivitamin and fish oil) I have elevated liver enzymes (ALT and AST), low RBC and WBC, low thyroid hormones T3 and T4, low blood pressure, low heart rate, and hypocholesterolemia (my HDL has fallen from 72 to 48, and LDL from 55 to 45). I have been tossed about to dozens of specialists and undergone quite a few tests, but nothing pans out. Last October, I was referred to a dietician who suggested gluten intolerance, but nothing progressed from that at the time. Today, I went to see the P.A. at my doctor's office and asked for a celiac panel if only to rule it out. I was unexpectedly met with a flat-out refusal and ten minute tirade that "anyone can graduate from the google school of medicine" and "it would be a waste of resources to order the test." I made another appointment with a different practitioner at the same office for next week hoping that he might heed my request, but I need to know if this is worth pursuing. I am just looking to get some honest feedback as to whether anyone has experienced these symptoms and if they are indicative of celiac disease as my research and the dietician's suggestion led me to believe. Thank you in advance!
  3. Celiac.com 08/15/2016 - On May 3rd, 2016, as part of an ongoing effort to learn more about celiac disease, the U.S. Preventive Services Task Force (USPSTF) released its first-ever draft recommendation statement, and draft evidence review. The statement basically says that there just isn't enough evidence to adequately weigh the benefits and harms of celiac disease screening in asymptomatic patients. This is an "I" recommendation that does not apply to patients with symptoms of celiac disease such as diarrhea, abdominal pain and unexplained weight loss. They basically call for "[m]ore evidence on screening for celiac disease…before the task force can recommend for or against screening people who don't have any signs or symptoms of the condition," said USPSTF member Alex Krist, M.D., M.P.H., in a news release. "In the face of unclear evidence, physicians should use their clinical judgment when deciding whom to screen," Krist added. The USPSTF pointed out that their future recommendations for screening patients would benefit from research into: The effectiveness of targeted screening in patients at increased risk for celiac disease The accuracy of serological markers in asymptomatic patients, particularly those with risk factors The effect of treatment of celiac disease in asymptomatic patients who have positive blood tests for celiac disease, and The clinical outcomes such as changes in health and quality of life in people who are screened versus people who are not screened Read more at: AAFP.ORG.
  4. I've recently come to terms with my issue with gluten. Those terms being : drug addiction. When a craving hits I'd rather feed it than face the unsettling loss of control I feel when I go without it. I feel pathetic and desperate and I don't like feeling that way. Especially about etwas as silly as food. It's like there's a hole that will cause me extreme anxiety and irritability unless I plug it up with bread. Until I got online and learned that wheat foods act upon our brain in the same way opiates do I just felt like I was losing my mind to some strange eating disorder. People on gluten intolerance message boards even said that they have faced heroin addiction and withdrawal and gluten is no different. I don't even need to eat gluten immediately when a craving hits. Oddly enough, if I plan how I will soon be consuming gluten that'll stave off the desperation for a few days. I make excuses for it. Like, it's a holiday, or life has been stressful. I act like I can have just a little & it doesn't open the floodgates to full on cravings for the stuff. Wheat products will help me sleep when I have insomnia. Help me cope when I have anxiety or depression. They are an option for pain management when I either don't have my prescribed opiate or don't want it cuz it makes me very nauseous and itchy in a way that bread will never do. I recently realized that the only way I know to come down from feeling extremely suicidal and manic (dealing with depersonalization) is to eat wheaty foods. I've got these very good, valid reasons for why I continue to use it. But, I'm using it. Using it instead of learning healthy coping techniques. Instead of facing demons. And worst of all, I have chronic lyme disease on top of gluten intolerance. Chronic inflammatory disease plus inflammation from gluten intolerance. I see the hair loss, the weight gain and bloating, the pimples and clogged pores. What I don't see is how much damage I'm doing to my insides by continuing to eat gluten. It makes my arthritis flare, so my hands and back hurt worse. I brush that off though, cuz they hurt anyway; what's the big deal with worse. My hair is falling out, my complexion is wrecked, my arthritis is worse, my stomach is huge....and I'm still trading my health away for the comfort of breads. What if this choice, this bad choice, I keep making is going to prevent me from being functionally healthy....like ever?! If the hallmark of any addiction is continued use despite the negative impact on your life, then it's safe to say I'm addicted to gluten. Admitting I have an addiction is a big step. It means that now when I use, I say to myself that I am "using" and no longer refer to it as, "going off my diet". I'm slowly recognizing the ways that I use it. I'm overcoming some of those issues. I can deal with not sleeping; sleeping at night instead of the day is not worth eating gluten for. It's a challenge. I know just what to do; how "using" would fix it. I feel guilty and anxious about sleeping all day instead of at night. But, I can stay strong in that situation. When I fold and hit that gluten hard is pain and suicide. By pain I don't mean , "oh ow, I'm not comfortable, I don't want to do anything." I mean pain like my leg is being torn from my body by a mac truck and writhing in bed, screaming (actually screaming) in agony until I'm too exhausted to move and too hoarse to cry out. I mean pain like I can't move out of my bed to even eat or pee and even a normal breath is excruciating so I have to consciously breathe. By suicide I don't mean that I just want to kill myself. For me, it's a spinning out, losing my grip sort of situation, where continuing to participate in this hell is just illogical and thus killing myself is the solution. The world is just wool over my eyes; nothing is actually real. I died a long time ago and this is now a prison for my mind. I guess it's more like psychosis. (been a problem since I got dosed with anti-psychotics cuz doctors didn't realize my leg/back pain was nerve pain; they thought it was a delusion) Yeah, gluten is the best for those two things. I'll consciously trade away my hair, my beautiful body and youthful clear complexion for less pain and no psychosis any day. But that doesn't legitimize my drug use and it doesn't excuse it. I imagine a lot of heroin addicts are opting out of worse suffering too. They still need help. And so do I. Friends and family literally scoff at me when I tell them I'm addicted to gluten & tell them how their encouraging me to eat it is like handing heroin to heroin addict or cigs to a smoker. They say I'm a adult and I can make my own choices. They don't want the responsibility of helping me stay clean. I need like a sponsor or a gluten addicted buddy to help me thru this. I've been trying for years on my own & am still failing. Where can I get that help?
  5. Celiac disease support groups in the United States - Includes national organization affiliation (if any). Alabama Birmingham - Support Group Birmingham Celiac Disease Support Group (Alabama) Contact: Rebecca Kinney Email: birminghamceliac@hotmail.com Los Angeles - Support Group: Awesome Friends with Food Sensitivities Contact: Harmony Hopkins Website: http://www.meetup.com/Awesome-Friends-with-Food-Sensitivities/ Email: awesomefriendsmeetup@gmail.com Huntsville, AL North Alabama Gluten Intolerance Group Jeana Swaim, President Tel: (256) 233-8436 email: jswaim@arilion.com Alaska Anchorage Resource: Contact: Michelle Johnson 815 W. 12th Avenue Anchorage, AK 99501 Tel: (907) 279-9856 E-mail: michelej@alaska.net Anchorage - Resource: Contact: Alison L. Smith, Branch Manager E-mail: ancgig@customcpu.com Arizona Fountain Hills - Support Group Contact 1: Allyn Krieger-Fiedler NMD E-mail: drakfiedler@cox.net Contact 2: Margy Squires E-mail: msquires@e-tyh.com Green Valley - Support Group Contact: Kay Bleuer E-mail: nkbleuer@yahoo.com Payson - Support Group Contact 1: Nancy A. Palmer Payson Area Celiac Support Group HC 2 Box 95-S Payson, AZ 85541 Tel: (520) 478-4383 Contact 2: Jane Kendall HCR Box 305-B Payson, AZ 85541 Tel: (520) 474-6707. Phoenix - Support Group Contact 1: Russ Boocock Sunshine Celiac Support Group 16205 N. Boulder Drive Fountain Hills, AZ 85268-1519 Tel: (602) 837-1953 Conact 2: Walter Koncar 1920 E. Inglewood St. Mesa, AZ 85203 Phoenix - Support Group Contact 1: Diane Lake Celiac Support of Greater Phoenix (A CDF Connections Group) Tel: (623) 587-8885 E-mail: dlake41@cox.net Contact 2: contact 2: Ruth Arieli Tel: (480)922-7492 E-mail: arieliline@cox.net Internet: http://www.phoenixceliac.com Tucson - Support Group Southern AZ Celiac Support Contact 1: Cheryl Wilson 11605 E Golf Links Rd Tucson, AZ 85730 Tel: (520) 298-5551 E-mail: rhranchaz@earthlink.net Sue Beveridge 1807 W. Mountain Laurel Dr. Tucson, AZ 85737 Jeannine Faidley 8479 East Tiffany Drive Tucson, AZ 85715 Tel: (520) 298-9480 E-mail: suebever@comcast.net Internet: http://www.southernarizonaceliacsupport.org Arkansas Hot Springs Village - Resource: Contact: Betty Shepherd 11 Indiana Circle Hot Springs Village, AR 71909 Tel: (501) 922-6034 Little Rock - Support Group Contact: Anne Luther Gluten Free in Central Arkansas 4710 Sam Peck Road, 1015 Little Rock, AR 72223 Tel: (501) 223-3981 E-mail: aaluther@comcast.net Mountain Home - Support Group Contact: Marilyn H. Jorgensen Arkansas/Ozark Celiac Support Group (CSA) 198 Cochran Drive Mountain Home, AR 72653 Tel: (501) 492-5243 Rogers - Support Group Contact: Janice Carmichael Northwest Arkansas Celiac-Sprue Group (Fayetteville, AR) 2703 Kathy Lane, Rogers, AR 72653-8725 Tel: (501) 636-8995 California Carlsbad - Resource: Contact: Helen Foreman 7112 Lantana Terrace Carlsbad, CA 92011 Tel: (760) 931-7809 E-mail: bhforeman@webtv.net Lake Arrowhead - Support Group Contact: Jeanne Dickson PO Box 2052 Lake Arrowhead, CA 92352 Tel: (208) 699-5913 E-mail: gfjeanne@msn.com Los Angeles - Support Group: Contact: Harmony Hopkins Awesome Friends with Food Sensitivities Website: http://www.meetup.com/Awesome-Friends-with-Food-Sensitivities/ Email: awesomefriendsmeetup@gmail.com Marin - Support Group Gluten Intolerance Resource Group of Marin Contact: Alison St. Sure Tel: (415) 785-4980 Merced - Resource: Contact: Gary L. Brackney Sr. 3596 Hagen Court Merced, CA 95348 Tel: (209) 722-7760 Modesto/Stockton/Turlock - Support Group Central Valley Celiacs Contact: Karen Cadiz Tel: (209) 823-3211 E-mail: centralvalleyceliacs@comcast.net Newport Beach - Support Group Contact: Barbara Nielsen Newport Beach Celiacs 440 Villa Point Drive Newport Beach, CA 92660 Tel: (949) 644-4966 E-mail: glutenfreecoach@cox.net Oakland - Support Group Contact 1: Melissa Batavia Sprue Group of the SF Bay Area Tel: (510) 655-2555 E-mail: melbatavia@comcast.net Contact 2: Ellen Eagan 632 Miller Ave. South San Francisco, CA 94080 Tel: (415) 583-6413 E-mail: eagan@pangloss.ucsf.EDU Orange County - Support Group Contact: Cecile Weed Orange County Celiacs Tel: (714) 750-9543 Palm Springs - Resource: Contact: Taylor Cushmore 2283 S. Alhambra Drive Palm Springs, CA 92264 Tel: (760) 416-2051 E-mail: TaylorCush@aol.com Redding - Support Group: The Redding Gluten Free Support Group Contact: Misty Price Redding, CA 96003 Tel: (530) 223-2167 E-mail: mistyprice@charter.net Solano County - Support Group Contact: Crystal Elizabeth Tel: (415) 828-5574 E-mail: solanocountyceliacs@gmail.com San Luis Obispo County - Support Group Central Coast Celiacs Contact: Isabella Porter Tel: (805) 314 0394 Email: thecentralcoastceliacs@gmail.com Santa Maria - Support Group Santa Maria Celiac Support Group Contact: Leona Meyer Email: info@smvceliac.com Internet: smvceliac.com Sacramento - Support Group Contact 1: Diane Craig Sprue & You (CSA) Tel: (916) 483-8546 E-mail: dcraig101@hotmail.com Contact 2: Kathleen G. Hughes Tel: (530) 672-1104 San Bernardino - Support Group Contact 1:Patricia Berger Redlands Area Celiac Sprue Support Group 627 Fountain Ave. Redlands, CA 92373 Tel: (909) 793-3712 Contact 2: Robert V. Breunig Highlander Hall Economics Dept. University of California Riverside Riverside, CA 92521 E-mail: bbreunig@mail.ucr.edu. San Diego Support Group Contact: Glorian Beeson San Diego Celiac Sprue Association (CSA) Tel: (760) 721-1791 E-mail: frankbeeson@cox.net Contact 2: William & Helen Foreman 7112 Lantana Terrace Carlsbad, CA 92009 Tel: (760) 931-7809 E-mail: bhforeman@webtv.net Contact 3: Sandy Milne Tel: (858) 278-1413 E-mail: shipmates2@mindspring.com San Gabriel Valley - Support Group CDF West San Gabriel Valley, including Burbank/Glendale Contact: Tenny Custer Tel: (626) 287-5436, E-mail: tenaya3@earthlink.net CDF East San Gabriel Valley Contact: Lynne Turner Tel: (626) 915-2196, E-mail: travelynne812@yahoo.com Internet: www.sgvceliac.org Santa Ana - Support Group Santa Ana Celiacs Contact: Cecile Weed 13471 Marty Lane Garden Grove, CA 92843 Tel: (714) 750-9543 Contact 2: Debbie Lee Tel: (714) 830-8237 Santa Cruz - Support Group Santa Cruz Celiac Support Group Contact: Pam Newbury 543 Ice Cream Grade Santa Cruz, CA 95060 Tel: (831) 423-6904 E-mail: pam@santacruzceliac.org Internet: http://santacruzceliac.org Santa Rosa - Support Group Contact 1: Laura Southworth Sonoma County CSA 480 Bohemian Highway Freestone, CA 95472 Tel: (714) 798-3112 Contact 2: Rosemary Yates 129 Grenvillia Drive Petaluma, CA 94952 Tel: (707) 766-8606. Stockton - Support Group Contact 1: Karen Cadiz Central Valley Celiacs (CSA) E-mail: centralvalleyceliacs@comcast.net Tel: (209) 823-3211 Temecula - Support Group: Contact: Ramona Inman Celiac Disease Foundation - Temecula Tel: (951) 676-0651 E-mail: ramonacdf@aol.com Ventura County - Support Group Contact: Kathy Button 2525 Waxwing Ave. Ventura, CA 93003 Tel: (805) 650-0520 E-mail: venturaceliac@sbcglobal.net Internet: http://www.venturaceliac.org Walnut Creek / Contra Costa County Support Group Walter Moeller, Founder and President Walter Moeller Tel: 925-932-8875 Email: GlutenfreeWC@Gmail.Com Colorado Berthoud - Resource: Contact: William R. Eyl 2600 Blue Mountain Avenue Berthoud, CO 80513 Tel: (303) 772-3155 Colorado Springs - Support Group Contact: Virginia Ludwig Pikes Peak (CSA) 3705 Meadowland Blvd. Colorado Springs, CO 80918 Tel: (719) 598-6748 Internet: www.groupspaces.com/pikespeakceliacs Colorado Springs - Support Group Contact: Victoria Garcia Celiac Youth Support Group 3408 Colony Hills Road Colorado Springs, CO 80916 E-mail: jv4garcia@msn.com Denver - Support Group Contact: Betty Elofson Denver Celiac Sprue Association (CSA) Tel: (303) 238-5145 Denver - Support Group Contact 1: Donna Steelman Denver Celiacs Denver Metro Area 4617 S Joplin Way Auroa, CO 80015 Tel: (303) 699-6170 E-mail: donnasteelman@comcast.net Contact 2: Jill Smith 2289 W. Hyacinth Road Highlands Ranch, CO 80216 Tel: (303) 683-3281 Fort Collins - Support Group Contact 1: Deborah Fusco Northern Colorado Chapter (CSA) 4610 Shoreline Road Fort Collins, CO 80526 Tel: (970) 226-4105 E-mail: dfusco@hach.com Contact 2: Delores Valdez-Amick 803 S. Van Buren Ave. Loveland, CO 80538 Tel: (970) 663-4048 Highlands Ranch - Resource: Contact: Mary Ann Peterson 10111 S. Silver Maple Rd. Highlands Ranch, CO 80126 Tel: (303) 683-1461 Connecticut Danbury/Waterbury - Support Group Contact 1: Suzel Cable Nutmeg Chapter (CSA) 548 High St., 2nd Floor Naugatuk, CT 06770 Tel: (203) 723-1318 Contact 2: Edith K. Meffley Tel: (203) 438-6108. Glastonbury - Resource: Contact: Beth Hillson 262 Cedar Ridge Drive, Glastonbury, CT 06033 E-mail: beth@glutenfree.com New Haven - Support Group Contact: Bill Jacobs Greater New Haven Celiac Group 100 Alexander Drive Cheshire, CT 06410 E-mail: wajacobs15@aol.com Northwest Connecticut - Support Group Contact: Marilyn Duffany Celiac Support Group of Northwest Connecticut (CSA) Tel: (203) 283-8506 Suffield - Support Group Contact: Kathy Bosse Celiac Discussion Group P.O. Box 307 Suffield, CT 06078 Tel: (860) 668-4835 Email: Kathybosse@aol.com Waterbury/Nutmeg - Support Group Contact 1: Carol Hoebel Celiac Sprue Support Group of NW Connecticut 84 Woodruff Ave. Thomaston, CT 06787 Tel: (860) 283-5577 E-mail: david.hobel@snet.net Contact 2: Suzel Cable 548 High St., 2nd Floor Naugatuk, CT 06770 Tel: (203) 723-1318 Contact 3: Edith K. Meffley Tel: (203) 438-6108 Contact 4: Joan Balough Tel: (203) 268-3829 Contact 5: Syd Aronowitz Tel: (203) 794-0150 . Delaware Wilmington/Newark - Support Group Delaware Celiac and Gluten Free Group Contact: Eva Szalewicz Tel: (302) 482-4882 E-mail: glutenfreedelaware@gmail.com Internet: http://glutenfreedelaware.tripod.com District of Columbia, Washington Washington DC - Support Group Contact: Susan Flinn Washington Area Celiac Support Group Tel: (202) 667-1624 Email: info@dcceliacs.org Internet: http://www.dcceliacs.com Florida Clearwater - Support Group Contact: Brian Kelly Pinellas County Celiac Group, CSA/USA Chapter #84 Tel: (727) 734-0561 E-mail: bkelly1@tampabay.rr.com Crystal River - Support Group Contact: Mary Lou Thomas Crystal River Celiacs 6350 W. Patriot St Homosassa, Florida 34448 Tel: (352) 628-9559 E-mail: mlthomas4cs@hotmail.com Daytona Beach - Support Group Contact: Juanita Ohanian Daytona Beach Celiac Support Group 2720 Autumn Leaves Drive Port Orange, FL 32128 Tel: (386) 492-3159 Email:juanitaohanian@gmail.com Fort Myers - Support Group Contact: Terry Foster Lee County Celiac Group Tel: (237) 935-5093 E-mail: terry@theskinnypantry.com Largo - Support Group Contact: Carol Anne Gluten Intolerance Support Group of Largo Cypress Palms, Largo 400 Lake Avenue N E Largo, Florida 33771 Tel: (727) 204-3538 E-mail: WyndStarrCO1@Yahoo.com Internet: http://health.groups.yahoo.com/group/GlutenFreeInFlorida Melbourne - Support Group Contact 1: Mary Kump GIG of Florida 3190 Village Park Melbourne, FL 32934-8296 Tel: (407) 254-2034 Contact 2: Michael Jones E-mail: mjones@digital.net Naples - Support Group Contact: Liisa DePeri E-mail: SWFLCeliac@gmail.com Internet: http://www.swflceliac.com/ Orlando - Support Group Contact: Michael Jones Celiacs of Orlando 12733 Newfield Drive Orlando, FL 32837 Tel: (407) 856-3754 E-mail: mjones@digital.net. Palm Beach - Support Group Contact: Phyllis Kessler Palm Beach County Celiac Support Group 15927 Laurel Creek Drive Delray Beach, FL 33446 Tel: 561-637-0396 Pensacola - Resource: Contact: Nancy Kilpatrick 5433 Lee St. West Milton, FL 32570 Tel: (904) 626-0064 Sarasota - Support Group Contact: Edith Kaplan Sarasota Celiacs E-mail: ediesrq@verizon.net Internet: http://www.sarasotamanateeceliacs.com South Florida Celiac Support Group CDF So. Florida Chapter Tel: 561-637-0396 Email: Pkessler23@AOL.COM Internet: http://www.southfloridaceliacsupport.org Tampa Bay - Support Group Contact: Janet Heitler Tampa Bay Celiacs 8106 North Albany Tampa, FL 33604 Tel: (813) 933-1645 E-mail: jchtbc42@tampabay.rr.com Georgia Atlanta - Support Group GIG of Atlanta Julie A Arnes - President Jennifer D. Harris -Program Chair E-mail: jennifer@gigofatlanta.com Internet: www.gigofatlanta.com Smyrna - Support Group Contact: Jan Austin Atlantic Celiac Support Group (CSA) Tel: (404) 433-9661 Warner Robins - Support Group Contact: Carol Hinton, Branch Manager Tel: (478) 397 5061 E-mail: middlegeorgiagig@yahoo.com Idaho Boise - Support Group Contact: Twylia McIlvanie Boise Idaho Celiac Support Group Tel: (208) 939-0373 E-mail: Scott Neil - SNeil@Cableone.net Illinois Aurora - Support Group Contact: Sandy Wright Aurora celiac disease/GI CSA Support Group Aurora, IL Email: sandywright@att.net Champaign - Support Group Champaign-Urbana Celiac Support Group E-mail: tlflipper76@aol.com Channahon - Support Group Contact: Jenn Cain 23918 W. McClintock Channahon, IL 60410 Tel: (815) 467-8180 E-mail: jacsgroup@att.net Chicago - Support Group Contact: Christine Sabbia Southwest Suburban Celiac Support Group Celiac Sprue Association of Greater Chicago 4111 W. 183rd St. Country Club Hills, IL Tel: (312) 282-1516 E-mail: socwkr@hotmail.com http://www.csagc.cjb.net Decatur - Resource: Resource: Jewell M. Barr 3333 Lost Bridge Rd. Decatur, IL 62521 Tel: (217) 423-8234 McHenry - Support Group Contact: Elizabeth Secora Tel (815) 363-1523 E-mail: emorgan816@comcast.net Internet: www.mchenryceliacs.com Peoria - Support Group Contact 1: Marsha Bishoff Central Illinois Celiacs (CSA) 619 Spring Street Washington, IL 61571 Tel: (309) 444-7415 or (309) 692-3848 Contact 2: Pat Weinkauf 825 West Meadows Place Peoria, IL 61604 Contact 3: Kate Jowick E-mail: Kate_Joswick@ccmail.wiu.edu Petersburg - Support Group Contact: Barb Hand Land of Lincoln Celiac Support Group R.R. 3, Box 276C Petersburg, IL 62675 Tel: (217) 632-2684 Rockford - Support Group Contact 1: Jolyn M. Fasula Rockford Area Chapter (CSA) 6816 Crown Ridge Rockford, IL 61103 Tel: (815) 877-5302 Contact 2: Ron Ford Tel: (815) 229-8804 Indiana Bloomington - Resource: Contact: Denise Brown Tel: (812) 824-9674 Evansville - Support Group Contact: Barbara Watson Evansville Celiac Sprue Support Group 1317 Bayard Park Dr. Evansville, IN 47714 Evansville - Resource: Contact: Gloria Baker 2711 Knob Hill Dr. Evansville, IN 47711 Tel: (812) 476-5744 Indianapolis - Support Group Contact: Joyce Etheridge Celiac Support Group of Indianapolis, (CSA) 1168 Sheffield Drive Avon, IN 46123 Tel: 317-272-4609 E-mail: mjbetheridge@aol.com Indianapolis - Support Group Contact: Diane Hosek 1371 Stoney Creek Circle Carmel, IN 46032 Tel: (317) 569-9670 Email: dianehosek@gmail.com Lafayette - Support Group Contact: Nancy H. Linnemann Indiana Gluten Intolerance Support Team (CSA) 2635 N 400 W., West Lafayette, IN 47906 Tel: (765) 497-0665 E-mail: n.linnemann@comcast.net La Porte - Resource: Contact: Margaret M. Diffendorfer 1012 Wright Avenue LaPorte, IN 46350 Tel: (219) 362-6607 Iowa Carroll - Resource: Contact: Lynne Humphrey 121 S. Maple St. Carroll, IA 51401-3123 Tel: (712) 792-5866 E-mail: hump@win-4-u.net Cedar Rapids - Support Group Cedar Rapids support group (CRCCgig) Contact: Theresa Brandon 2407 Linwood St. S.W. Cedar Rapids, Iowa 52404-3554 Tel: (319) 362.8087 E-mail: tatbrandon@gmail.com Internet: http://www.iowaceliacs.org Davenport - Support Group Contact: Becky Wentworth Quad City Celiac Group 6130 N. Hancock Ave Davenport, IA 52806 Tel: (563) 391-2968 E-mail: wentworth@netexpress.net Iowa City - Support Group Contact: Sarah Berke Iowa City Celiacs 735 Michael St. #32 Iowa City, IA 52246 Tel: (319) 337-9521 Manchester Support Group Contact 1: Marcia Intorf-president N.E.I. Celiacs Support Group 307 Gay St. Delhi, Iowa 52223 T el: (563) 922-2470 E- mail: msintorf@wildblue.net Contact 2: Lynn Cooper-secretary N.E.I. Celiacs Support Group 923 Doctor St. Manchester, Iowa 52057 T el: (563) 927-3870 E- mail: 923dlcoop@mchsi.com Tipton - Support Group Contact: Jacey Drollinger Living Free Celiac Disease Support Group Tipton, Iowa 52772 Tel: (319) 886-6255 Waverly - Support GroupWaverly Area Celiac Group Contact 1: Jill Everding Denver, IA 50622 Tel: (319) 984-5928 E-mail: jill.everding@wartburg.edu Contact 2: Betty Bast Waverly, IA 50677 Tel: (319) 231-0107 E-mail: bastbetty13@gmail.com Waterloo - Support Group Contact: Kristi Simmerman Waterloo & Cedar Falls Celiacs 1753 Robin Rd. Waterloo, IA 50701 Tel: (319) 234-2104 E-mail: simmerman@bigfoot.com Kansas Kansas City - Support Group Contact 1: Helen Richards Greater Kansas City Celiacs (CSA) 14409 W 123rd Terrace Olathe, KS 66062 Tel: (913) 393-2400 E-mail: richgary@swbell.net Contact 2: Karen & Roger Miller 11714 Hadley Overland Park, KS 66210 Kansas City - Resource: Contact: Danelle Sorensen Olathe, KS Tel: (913) 397-9284 E-mail: homesweethome@yahoo.com Leavenworth - Resource: Contact: Latisha May Thomas 1313 Vilas Leavenworth, KS 66048 Tel: (913) 682-6678 Manhattan - Support Group Contact: Rene' Eichem Manhattan Celiac Support Group 2442 Buttonwood Drive Manhattan, KS 66502 Tel: (913) 776-6013 Contact 2: Mary Jordan 2513 Nutmeg Manhattan, KS 66502 Tel: (913) 539-2963 E-mail: MJordan672@aol.com Topeka - Support Group Contact: Sharon Larson, President Topeka Celiac Sprue Support Group (CSA) 4310 SE McMahan Ct. Tecumseh, KS 66542 Tel: (785) 379-0479 E-mail: slars5@cox.net Wichita - Support Group Contact 1: Kay Finn Wichita Celiacs (CSA) 805 N. Cypress Wichita, KS 67206 Tel: (316) 686-7034 Internet: http://www2.southwind.net/~weeks/celiac/ Kentucky Benton - Support Group Contact: Rose Mary Mueller Heartland CS.DH of W. Ky./S.Il. 102 Wyndy Brook Lane Benton, KY 42025 Tel: (270) 527-8330 E-mail: heartlandceliac@bellsouth.net Internet: http://www.heartlandgig.org Louisville - Support Group Contact 1: Emily McKinney Greater Louisville (Kentucky) CSA Chapter E-mail: ecmckinney@gmail.com Internet: www.glutenfreelouisville.org Louisiana Baton Rouge - Support Group Contact 1: Mary Mack-Jeansonne, President Celiacs of Baton Rouge 3387 Madeira Drive Baton Rouge, LA 70810 Tel: (225) 766-8872 E-mail: celiacsbr@aol.com Baton Rouge - Support Group Baton Rouge Area Celiacs Contact: Glenda Worm Tel: (225) 571-7980 E-mail: pelinc1@bellsouth.net New Orleans - Support Group Contact 1: Diane Schaefer Greater New Orleans Celiac Sprue Support Group Tel: (504) 348-3099 Contact 2: Lorraine McCaslin Tel: (504) 833-1717 New Orleans - Support Group Contact: Annette Bentley, BA, MSc President, American Celiac Society P.O. Box 23455 New Orleans, LA 70183-0455 Tel: (504) 737-3293 Internet: www.americanceliacsociety.org Slidell - Resource: Contact: Jamie Head 3771 Arrowhead Dr. Slidell, LA 70458 Tel: (504) 643-2676 Maine Bangor - Support Group Contact 1: Ann Delaware Celiac Sprue Support Group of the Greater Bangor Area P.O. Box 472, Bradley ME 04411-0472 Tel: (207) 827-2733 Contact 2: Greg Chappelle 27 Hilliard St. Old Town, ME 04468 Bangor - Resource: 25 Cushing Drive Glenburn, ME 04401-1431 Tel: (207)-947-9958. Bradley - Support Group Contact: Ann Delaware Bradley Celiacs P.O. Box 472 Bradley, ME 04411 E-mail: Anned0472@aol.com Portland - Support Group Portland Maine Celiac/DH Support Group (CSA) Tel: (207) 409-5677 E-mail: info@csachapter88.com Maryland Annapolis - Support Group Chesapeake Celiac Support Group Contact: Patricia Minnigh Tel: (410) 672-5834 Internet: http://www.celiacsonline.com Baltimore - Support Group Maryland Chapter 11 CSA/USA Contact 1: Phyllis Farmer 600 Straffan Drive, Unit 502 Timonium, MD 21093, Tel: (410) 560-1279 Contact 2: Doug Rettberg 498 South Hills Court Westminster, MD 21158 Tel: (410) 876-3604 Bethesda - Support Group Contact: Jerry Malitz Montgomery County Support Group Washington Area Celiac Support Group Email: dcmetroceliacs@gmail.com Internet: http://www.dcceliacs.typepad.com Delmarva - Support Group Contact: Betty Bellarin Maryland Delmarva Celiac Support Group E-mail: bbrboc@comcast.net Massachusetts Boston - Support Group Children's Hospital- GI/Nutrition Dept. 300 Longwood Ave. Boston, MA 02115 Tel: (617) 355-2127 E-mail: celiacsupportgroup@childrens.harvard.edu Boston - Support Group The Healthy Villi (Greater Boston Celiac/DH Support Group, Chapter #67 of CSA/USA) Chairperson: Lee Graham E-mail: randlgraham@comcast.net Membership Chairperson: Catherine Mirick Tel: 888-4- CELIAC Internet: http://www.heathyvilli.org Cape Cod - Support Group Contact 1: Diane Bertrand Cape Cod Support Group PO Box 1114 North Falmouth, MA 02556 E-mail: Dibertrand@comcast.net Contact 2: Margo Finnell RD, MPH, LDN E-mail: Margo820@juno.com Fall River - Support Group Contact: Kathy Thiboutot Southeast New England (including Cape Cod ) Celiac Support Group Tel: (401) 624-8888. Lowell - Resource: Contact: Katherine C. Merrill 45 Tolman Ave. Lowell, MA 01854 Tel: (978) 454-2822 Michigan Ann Arbor - Support Group Gluten Free Ann Arbor Contact: Valerie Mates E-mail: gfaa@unixmama.com Internet: http://groups.yahoo.com/group/glutenfreeannarbor/ Battle Creek - Support Group Gluten Free Club Battle Creek, MI Contact: Nancy Makuch Tel (269) 979-7698. Coldwater - Resource: Contact: Bruce & Ruth Young 335 Barnhart Road Coldwater, MI 49036 Tel: (517) 278-8248 Escanaba - Resource: Contact: David A. Jondrow 312 Minneapolis Ave. Gladstone, MI 49837 Tel: (906) 428-1621 Flint - Support Group Contact: Margaret Clegg Mid-Michigan Celiacs Tel: (810) 252-1049 E-mail: midmiglutenfree@gmail.com Contact 2: Pat Adams Tel: (989) 743-3990 E-mail: pawadams4401@aol.com Internet: http://www.csaceliacs.info/csa_chapter_59.jsp Gladstone - Resource: Contact 1: David A. Jondrow 312 Minneapolis Avenue Gladstone, MI 49837 Tel: (906) 428-1621 Grand Rapids - Support Group Contact: Nancy Carlson Greater Grand Rapids Celiac Support Chapter # 78 (CSA) E-mail: celiacsupport@sbcglobal.net Grand Rapids - Children's Support Group Contact: Nancy Spears E-mail: celiackids@glutenfreegr.com Kalamazoo - Support Group CSA of Greater Kalamazoo Contact: Annette Hensley Tel: (269) 492-5278 Michelle Rutan Tel: (269) 342-1533 Internet: www.glutenfreekzoo.org Lansing - Support Group Greta DeWolf 1815 Sandhill Rd. Mason, MI 48854 Tel: (517) 349-0294 Internet: http://micapitalceliacs.atspace.com Support Group Contact: Donovan J. Sprick Mid-Michigan Chapter (CSA) Tel: (313) 733-6857 Dryden - Support Group Tri-County Celiac Support Group, SE Michigan Newsletter information: TCCSG News, Editors: Contact: Robin Donagrandi 21580 Birchwood Farmington, MI 48336 E-mail: TCCSG@twmi.rr.com Tel: 86-NOGLUTEN Internet: www.tccsg.com Traverse City - Support Group Contact: Sandra Cartwright Traverse Area Gluten Free Support Group (TAGFSG) PO Box 4112 Traverse City, MI 49685-4112 Tel: (231) 947-8324 E-mail: Scarttc@aol.com Contact 2: Kathy DiMercurio Tel: (231) 946-1687 Conact 3: Kelli Sefton (children) Tel: (231)-943-0878 Antrim and Kalkaska County contact: Linda Bicum Tel. (231) 322-2811 Benzie County contact: Betty Robotham Tel. (231) 325-5725 Minnesota Brainerd Lakes Area Celiac Support Group Contact: Jennifer Chock Brainerd, MN Tel: (218) 825-9525 Grand Rapids - Support Group Range Area Celiac Support Group Contact: Angeline Edgar Tel: (218) 328-5731 E-mail: rangeceliac@yahoo.com Minneapolis/St. Paul Area Support Group Contact 1: Karen Geronime Northland Celiac Support Group (formerly Midwest Gluten Intolerance Group) E-mail: klgeronime@aol.com Contact 2: Judy LaBrosse E-mail: jlabrosse@usgo.net Internet: http://www.northlandceliacs.org Greater Minneapolis Area - Support Group Mpls./St. Paul and greater Minnesota Area Support Contact: Lynn Gabriel Tel: (952) 443-2626 E-mail: lynnshadlegabriel@yahoo.com Contact 2. Carol Crandall E-mail: cgrzlybr@aol.com Internet: http://www.CDFTwinCities.com Rochester Support Group Contact: Coyla Shepard, Founder Southeast Minnesota Celiac Support Group 2805 Hidden Hills Lane NE Rochester, MN 55906 Contact 2: Warren Budd Tel: (507) 288-9056 Mississippi Gulfport - Support Group Contact: Jane Dacey Mississippi Celiac Support Group P.O. Box 1276 Ocean Springs, MS 39566 Tel: (601) 875-2820 Missouri Branson - Support Group GIG of Branson Tri-Lakes Barbara Hicks 9 Arrowhead Road Kimberling City, MO 65686 Tel: (417) 739-2703 E-mail: honedu@centurytel.net Columbia - Support Group Contact: Donna Kasper Columbia MO Gluten Free Support Group Columbia, MO 65203 Tel: (573) 447-5659 E-mail: n2kasper@mchsi.com Kansas City - Resource: Contact: Elanor R. Aadams 135 N. Missouri Liberty, MO 64068 Tel: (816) 781-6514 Nevada (and Southeast Kansas) - Support Group Gluten Intolerance Group of North America Contact: Sharon Jepson Tel: 979-848-7455 St. Louis - Support Group Contact 1: Bill Vellios Sr. St. Louis Chapter (CSA) 812 Kehrs Mill Road Ballwin, MO 63011-2442 Tel: (314) 391-6855 Contact 2: Joan Fitzsimmon 6716 Westway Road St. Louis, MO 63109 Tel: (314) 351-5114 Contact 3: Linda Ritter E-mail: nltr@charter.net Montana Alzada - Resource: Contact: Teri Lindberg HC 56, P.O. Box 60 Alzada, MT 59311 Big Timber - Resouce: Contact: Debra Barrett P.O. Box 1018 513 W. Third Big Timber, MT 59011 Billings - Resouce: Contact: Dennis McGough 1023 Marie Dr. Billings, MT 59101 Tel: (406) 256-5569 Bozeman / Helena - Support Group Contact: R. Jean Powell Montana Celiac Society 1019 S Bozeman Avenue, #3 Bozeman, MT 59715 Tel: (406) 586-1285 E-mail: rjeanp@aol.com Choteau - Resource: Contact: Jeanette Rasmussen 4210 Highway 89 Choteau, MT 59422 Tel: (406) 466-2091 Columbus - Resource: Contact: Jeanne Murray P.O. Box 594 Absarokee, MT 59001-0594 Tel: (406) 328-4851 Deer Lodge - Resource: Contact: Eloise Faber 911 Missouri Avenue Deer Lodge, MT 59722 Tel: (406) 846-1246 Havre - Resouce: Contact: Ruth Wardell Havre, MT 59522 Tel: (406) 265-1701 Helena - Resource: Contact 1: Cleo Anderson P.O. Box 4637 Helena, MT 59604 Tel: (406) 227-6671 E-mail: cleomt@aol.com Contact 2: Judy Harris 1817 Silver St. Helena, MT 59601 Tel: (406) 443-5158 Missoula - Resource: Contact: Dottie Caluori 1440 River St. Missoula, MT 59801 Tel: (406) 542-7499 Wolf Point - Resource: Contact: Alice Whitmer 872 Nickwall Road Wolf Point, MT 59201 Tel: (406) 525-3289 Celiac disease support groups in the United States - Includes national organization affiliation (if any). Nebraska Grand Island - Support Group Contact: Keith McTavish Central Nebraska Celiacs P.O. Box 411 Wood River, NE 68883 Tel: (308) 583-2949. Grand Island - Resource: Contact: Diane D. Epp Box 595 Henderson, NE 68371 Tel: (402) 723-4759 Lincoln - Support Group Contact 1: Beckee Moreland Star City Area Chapter (CSA) 1639 Sunset Rd. Lincoln, Ne 68506 Tel: (402) 441-9621 E-mail: beckland@inebraska.com Omaha - Celiac Sprue Association/USA Contact: Mary A. Schluckebier PO Box 31700 Omaha, NE 68131-0700 Tel: (402) 558-0600 E-mail: csaceliacs@csaceliacs.org Omaha - Support Group Contact 1: Lynn Samuel Midlands Chapter (CSA) 6303 Kentucky Road Papillion, NE 68133 Tel: (402) 339-1346 Contact 2: Rebecca Warren Tel: (402) 235-3576 Seward - Resource: Contact: Mary Schluckebier 1616 Plainview Avenue Seward, NE 68434 Tel: (402) 643-4340 Nevada Las Vegas - Support Group Contact: Jennifer Sullivan Tel: (702) 985-7664 Las Vegas - Resource: Contact: Joanne B. Mathews 270 W. Basic Road Henderson, NV 89015 Las Vegas - Resource: Contact: Catherine Hammelrath 3355 Rolan Court Las Vegas, NV 89121 Tel: (702) 733-7633 E-mail: vegascat53@cox.net Reno Support Group Contact: Kerry Seymour, MS, RD, CDE Reno Celiacs & Nutrition Resources 475 Hill Street, Suite C Reno, Nevada 89501 Tel: (775) 329-8811 New Hampshire Laconia - Resource: Contact: Ann Marie Shumway 2541 Old Parade Rd. Laconia, NH 03246 Tel: (603) 528-1911 Nashua area - Support Group Contact 1: John Waksmonski Tel: (603) 437-1702 Contact 2: Christine Muir E-mail: themuirs@charter.net Portsmouth - Support Group Contact: Dan Davis 6 Oakridge Rd. Kensington, NH 03833 Tel: (603) 778-1938 E-mail: djdavis107@comcast.net New Jersey Brick - Resource: Contact: Gary Powers 284 White Oak Court Brick, NJ 08724 Tel: (732) 840-3718 Cherry Hill - Resource: Contact: Fran Twersky 107 East Burgess Road Marlton, NJ 08053-1202 Tel: (609) 983-3362 Hackettstown - Resource: Contact: Mrs. Merle Morse P.O. Box 148 Hackettstown, NJ 07840 Tel: (908) 852-7311 Long Branch - Support Group Specialized Pediatric Celiac Group Specialized Ped. Ambulatory Center 307 3rd Avenue Long Branch, NJ 07740 Tel: (201) 870-5216 Maple Shade-Resource Cindy Fisher 377 Crawford Ave. Maple Shade, NJ 08052 Tel: (856) 779-1562 E-mail : hfishernj@aol.com New Brunswick - Support Group Contact 1: Diane Eve Paley Celiac/DH Support Group and Cel-Kids Network CSA/USA Inc. #58 22 Island Drive Old Bridge, NJ 08857-2518 Tel: (908) 679-6566 E-mail: DEPaley@AOL.COM Contact 2: Alex Schwedack 5-c Twin Rivers Dr. East Windsor, NJ 08520 Tel: (609) 443-6623 Contact 3: Rosanna Beck Tel: (908) 225-7594 E-mail: B6724@aol.com Old Bridge - Support Group Contact: Diane Eve Paley Central Jersey Celiac/DH Support Group, CSA/USA 22 Island Dr. Old Bridge, NJ 08857 Tel: (732) 679-6566 E-mail: DEPaley@aol.com. Paramus - Support Group Contact: Lauri Schlussel American Celiac Society Bergen County 11 Marz Road Westwood, NJ 07675-8217 Tel: (201) 573-0397 Princeton - Resource: Contact: Evelyn Sasmor Tel: (609) 279-0770 E-mail: evelyn@sasmor.com South Jersey - Support Group CSA Southern New Jersey Chapter #9 Contact 1: Leah Edelstein, Co-chairperson 23 Stevens Drive Voorhees, NJ 08043 Tel: (856) 435-6785 E-mail: ledelstein@comcast.net Contact 2: Patti Townsend, Co-Chairperson, Membership Collingswood, NJ Tel: (856) 854-5508 E-Mail: pattitowns@verizon.net New Mexico Albuquerque - Support Group Contact: Marilyn Johnson Albuquerque Gluten Intolerance Support Group Celiac Sprue Association New Mexico State Coordinator Tel: (505) 299-5283 E-mail: marilynyj@comcast.net Las Cruces - Support Group Las Cruces Celiacs Contact: Susan Pieper 4825 Senita Las Cruces, NM 88011 Tel: (505) 522-8182 E-mail: spieper@huntel.com New York Albany - Support Group Contact 1: Katie Marschilok Capital District Celiac Support Group (Albany - ACS) 4 Fairlawn Lane Troy, NY 12180 Tel: (518) 271-1784 E-mail: Marschilok@aol.com Contact 2: Barbara Jordan Tel: (518) 439-8652 Batavia - Resource: Contact: Virginia R. Baldwin P.O. Box 158 Pavilion, NY 14525 Tel: (716) 584-3422 Binghamton - Support Group Contact: Nancy Dorfman Celiac Self Help Group 12 Laurel Avenue Binghamton, NY 13905 Tel: (607) 722-3848 Buffalo - Support Group Contact 1: Mike Lodico Gluten Free In WNY (GIG) P.O. Box 24 N.Tonawanda, NY 14120 Tel: (716) 694-3287 E-mail: glutenfree2@gmail.com Contact 2: Joanne Hameister Tel: (716) 655-0849 E-mail: jeham@buffnet.net Internet: http://www.glutenfreeinwny.com/ Hudson Valley Area - Support Group Contact: Cathy Selber Mid-Hudson Valley Gluten-Free Outings Meetup Group E-mail: clselber@optonline.net Ithaca/Cornell - Support Group Contact: Laura Johnson-Kelly 48 Comfort Rd. Ithaca, NY 14850 Tel: (607) 272-5902 E-mail: LWJ1@cornell.edu. Ithaca - Resource: Contacts: Mary Ochs 18 Whig St. Trumansburg, NY 14886 Tel: (607) 387-9221 E-mail: mao4@cornell.edu. Long Island - Support Group Contact 1: JoanAnn Defiglia Long Island Celiacs 1023 Jackson Avenue Franklin Square, NY 11010 Tel: (516) 437-0396 Contact 2: Ellen Mulligan 193-5th St. Hicksville, NY 11801 Contact 3: James J. Callahan Tel: (516) 794-1654. Middletown - Support Group Contact: Marisa Frederick Celiac Kids' Club 264 Scotchtown Road Goshen, NY 10924 Tel: (914) 294-1385 Mohawk Valley - Support Group Contact: Eleanor P. Wallace The Celiac Support Group of the Mohawk Valley - chapter of Celiac Disease Foundation 10 Clinton St., Apt. 715 Whitesboro, NY 13492 Tel: (315) 736-6981 E-mail: elpar6@yahoo.com Internet: http://www.csgmv.org/ New York - Support Group Contact 1: Mary Ferry Greater New York Celiac Support Group (CSA) Tel: (212) 304-1026 Contact 2: Merle Cachia Tel: (212) 662-2464 E-mail: pjc1@columbia.edu Plattsburgh - Support Group North Country Celiac Support Group Contact: Shirley Koester Tel: (518) 643-9461 E-mail: redwing2@localnet.com Rochester - Support Group Rochester Celiac Support Group Contact 1: Susan Kath 1039 Moseley Road Fairport, NY 14450 Tel: (585) 425-9994 Contact 2: Marvin Becker 210 Crandon Way Rochester, NY 14618 Tel: (585) 442-9528 E-mail: http://www.rochesterceliacs.org/contact.htm Internet: http://www.rochesterceliacs.org Suffolk County - Support Group Suffolk County (NY) Celiacs-a Branch of GIG Contact 1: Les Doti P.O. Box 13 Kings Park, NY 11754-0013 Contact 2: Michael Thorn Tel: (631) 395-5071 E-mail: SuffolkCeliacs@aol.com Internet: http://www.suffolkcountyceliacs.org Syracuse - Support Group Contact: Ruth Wyman Central New York Celiac Support Group 263 Roxbury Road Syracuse, NY 13206 Tel: (315) 463-4616 E-mail: info@CNYceliacs.org Website: www.CNYceliacs.org White Plains - Support Group Contact 1: Chris Spreitzer Westchester Celiac Sprue Support Group P.O. Box 66 Montrose, NY 10548-0066 Tel: (914) 737-5291 E-mail: info@westchesterceliacs.org Contact 2: Lou Zimet E-mail: louzimet@optonline.net Williamsville - Support Group Contact: Cliff Hauck, Co-Chairperson P.O. Box 1835 Williamsville, NY 14231 Western NY Gluten Free Diet Support Group (CSA/USA Chapter #33-1990) Tel: (716) 636-6021 E-mail: hauckc@adelphia.net Internet: http://www.buffaloglutenfree.org North Carolina Asheville - - Resource: Contact: Leah R. Karpen 518 Ox Creek Road Weaverville, NC 28787 Tel: (704) 645-9067 Boone - Resource: Contact: Ernest Lane 827 Blairmont Dr. Boone, NC 28607 Tel: (704) 264-4618 or (704) 262-2380 E-mail: epl@math.appstate.edu Charlotte - Support Group Contact: Janet Kline Charlotte Celiac Connection Tel: (704) 442-2997 E-mail: Janet@Charlotte-Celiac-Connection.org Internet: www.Charlotte-Celiac-Connection.org Durham - Fayetteville Support Group Contact 1: Ruth Thomas North Carolina Celiacs (CSA) Tel: (919) 542-4030 Contact 2: Susan Black Tel: (910) 875-3186 Raleigh-Durham - Support Group Contact 1: Diana Clarke Triangle Celiac Support Group E-mail: DeBucket@aol.com Contact 2: Connie Margolin E-mail: ThirdEar0@aol.com North Dakota Bismarck - Support Group Contact: Lila Brendel Central ND Celiac Resource Group 1900 93 St. SE Bismarck, ND 58504 Tel: (701) 258-7800 E-mail: CNDC_GIG@msn.com Fargo - Support Group Contact: Stacey Juhnke or Sara Vollmer GIG of Fargo-Moorhead PO Box 464 Fargo ND 58107 Tel: (701) 237-4854, (701) 412-8110, (701) 238-0587 Internet: www.gluten.net/local-branches/north-dakota/gig-of-fargo-moorhead Email: GIG_FM@hotmail.com Oakes - Support Group Contact: Juli Becker North Dakota Celiacs (CSA) 10585 85th St. SE Oakes, ND 58474 Tel: (701) 742-2738 Ohio Bellevue - Support Group Contact: Dennis & Cheryl Dendinger North Coast Celiac Support Team Bellevue, OH 44811 Tel: (419) 483-6529 Canton - Support Group Contact: Denise Ramey Alliance Area Celiac Support Group E-mail: daramey33@netzero.net Tel: (330) 966-1515 Cincinnati - Support Group Contact: Denise Ramey Cincinnati Celiac Support Group Children's Hospital Medical Center Cincinnati, OH 45229 Tel: (513) 887-7153 Internet: http://www.cinciceliac.com E-mail: president@cinciceliac.com Cleveland- Support Group Northeast Ohio Celiac Support Group E-mail: info@neohioceliac.com Contact: Trisha Lyons, RD, LD 2500 MetroHealth Dr. Cleveland, OH 44109 E-mail: TLyons@metrohealth.org Tel: (216)-778-7835 Internet: www.neohioceliac.com Cleveland - Support Group Contact: Cindy Koller-Kass, President Greater Cleveland Celiac Association CSA/USA Chapter 50 33040 Rockford Drive Solon, OH 44139 Tel: (440) 248-6671 E-mail: glutenfree1@yahoo.com Gluten Free Support Group of NW Ohio Contact: Holly McCollam Email: glutenfreesupportgroupofnwohio@aol.com Internet: https://www.facebook.com/groups/glutenfreesupportgroupofnwohio Columbus - Support Group Contact: Mary Kay Sharrett Gluten Free Gang 700 Children Drive Columbus, OH 43205-2696 Tel: (614) 722-3093 E-mail: sharretm@chi.osu.edu Contact 2: Monica Hrabowy 663 Laurel Ridge Drive Gahanna, OH 43230 Tel: (614) 337-1833 Tel: EHrabowy@aol.com. Internet: http://www.glutenfreegang.org Dayton - Support Group Contact 1: Sandra Leonard Miami Valley Celiac Sprue Support Group 560 Park Hills Crossing Fairborn, OH 45324 Tel: (513) 878-3221 E-mail: thebaker_30@yahoo.com Contact 2: Barbara Wieland 5903 S. Tecumseh Rd. Springfield, OH 45502 Tel: (937) 324-8652 E-mail: wielandbj@aol.com Mansfield - Support Group Contact: Bev Messner Richland County Celiac Support Group First Presbyterian Church 399 S. Trimble Rd. Mansfield, OH E-mail: bevmessner@aol.com Tel: (419) 589-5972 Internet: http://www.rccsg.com Toledo - Support Group Contact: Holly McCollam Gluten Free Support Group of NW Ohio E-mail: glutenfreesupportgroupofnwohio@aol.com Internet: https://www.facebook.com/groups/glutenfreesupportgroupofnwohio/ Oklahoma Norman - Resource Contact: Kate Martin Norman, OK Tel: (405)364-5612 email: one4life@swbell.net Internet: http://katesceliac.blogspot.com Oklahoma City - Support Group Contact: Heather Cline Oklahoma Celiac Sprue Support Group (CSA) 1403 Classen Drive, Oklahoma City, OK 73106 Tel: (405) 235-1715 E-mail: HMCline@aol.com Internet: http://www.OKceliac.com Okmulgee - Resource: Contact: Barbara Sipple Rt. 1, Box 247 Morris, OK 74445 Tel: (918) 733-4571 Tulsa - Support Group: Contact: Jennifer Croley Celiac Sprue Association Tulsa Chapter #119 E-mail: csatulsa@gmail.com Internet: www.csatulsa.org Oregon Bend - Support Group Contact: Lynelle Thomas Central Oregon Gluten Intolerance Group (GIG) 2442 NW Marken Bend, OR 97701 Tel: (541) 389-1731 Burns - Resource: Contact: Nici Bailey 449 S. Diamond Burns, OR 97720 Tel: (541) 573-1164 Grants Pass - Support Group Contact: Janine Chambers 1035 NE 6th St. Grants Pass, OR 97526 Tel: (541) 218-0229 Portland/Vancouver - Support Group Portland Metro GIG Branch Contacts Contact: Mary Wikle - Branch Manager PO Box 4204 Tualatin, OR 97062-4204 Tel: (503) 692-0724 E-mail: mwikle_carousel@yahoo.com Salem - Support Group Contact #1 - Ann Grafe 1328 Dogwood Drive Woodburn OR 97071 Tel: (503) 982-3644 Pennsylvania Bethlehem (Allentown area) - Support Group Contact: Carla Madden 809 Race St Catasauqua PA 18032 E-mail: kapanagia@yahoo.com Danville - Support Group Contact: Elaine M. Jeffreys ACS Danville City Support Group R.d.#6 Box 143 C Danville, PA 17821 Tel: (717) 275-0654 Gluten Free Group of Gettysburg Betsy Wargo, RD 717-339-2764 e-mail: bwargo@wellspan.org Harrisburg - Support Group: Contact: Linda L. Weller GIG of Harrisburg Address: PO Box 312 Hershey, PA 17033 Tel: (717) 520-9817 E-mail: Harrisburg@gluten.net Internet: http://www.harrisburgceliacs.org Indiana - Support Group Indiana Regional Medical Center Celiac Support Group Contact: Brenda Shilling, Director of NFS Indiana Regional Medical Center Indiana, PA 15701 E-mail: bshilling@indianarmc.org Lancaster Area - Support Group George and Becky Maag Tel: (717) 367-9257 E-mail: lancasterareaceliacs@yahoo.com Internet: http://www.lancasterareaceliacs.org Mount Pleasant - Support Group Mount Pleasant Celiac Support Group Contact: Vicky Vrabel 616 West Main Street Mount Pleasant, Pennsylvania 15666 Tel: (724) 542-9745 Philadelphia - Support Group Contact: Laura Sposito ACS Whoo Sprue Group 1211 Tree Street Philadelphia, PA 19148 Tel: (215) 336-5004 Philadelphia - Support Group Contact: Karen Dalrymple Greater Philadelphia Area Celiac Sprue Support Group 583 Valley View Rd. Langhorne, PA 19047 Pittsburgh - Support Group Contact: Elsie Janthey Pittsburgh East Area Celiac Sprue Support 204 George Lane Pittsburgh, PA 15235 Tel: (412) 823-2010 Contact 2: Lois Kosoglow Tel: (412) 744-2356 Contact 3: Ruth Masengill Tel: (412) 327-5564 Pittsburgh - Support Group Contact 1: Lorraine Weaver, Treasurer and Membership Greater Pittsburgh Celiac Sprue Support Group, Chapter #48 CSA/USA 1446 Greenbriar Court Library, PA 15129 Tel: (412) 835-4983 or (412) 833-9507 Contact 2: Theresa Fogle Tel: (724) 335-4892 E-mail: tfogle1@aol.com State College - Support Group Contact: Cindy Sunderland Central Pennsylvania Celiac Support Group RD 2, Box 189 McVeytown, PA 17051-9618 Tel: (717) 899-6482 E-mail ras@DD1.ARL.PSU.EDU Wilkes-Barre/Scranton - Support Group Contact: Rosemarie Butera CSA/USA Wilkes-Barre/Scranton Celiac Support Group Tel: (570) 655-0728 Wynnewood - Resource: Contact: Rita M. Herskovitz 52 Rockglen Road Wynnewood, PA 19096 Tel: (215) 642-9351 Rhode Island Providence - Support Group Contact: Tanis Collard MA & RI Celiac Support Group for Children 11 Level Acres Road Attleboro, MA 02703-6843 Tel: (508) 399-6229 Internet: http://members.home.net/kellyleech/celiac/csgc.html Rhode Island - Support Group Contact 1: Linda Monahan American Celiac Family Support Group of RI 155 Reservoir Road Pascoag, RI 02859 Tel: (401) 568-6110 E-mail: MonahanLinda@yahoo.com Internet: http://www.celiacsupportgroup.com South Carolina Columbia - Support Group Contact 1: Peggy Smith Palmetto Celiac Support Group 1508 Anthony Drive West Columbia, SC 29172 Tel: (803) 775-9466 or (803) 755-7291 Florence - Resource: Contact: Lea E. Marshall 1214 Hillside Avenue Florence, SC 29505 Tel: (803) 665-6290 Tennessee Jackson - Support Group Contact: Allan Clement 151 Lone Oak Dr. Jackson, TN 38305 Tel: (731) 423-5315 E-mail: aclementhome@hotmail.com Knoxville - support group Contact: Theresa Cornelius, MS, RD, LDN 7424 Oaken Dr. Knoxville, Tn 38938-4321 Tel: (865) 922-8780 E-mail: TheresaCornelius@Changing-Lifestyles.com Memphis - Support Group Contact 1: Lisa Trenthem Memphis Area Celiac Support Group 1753 Carruthers Pl. Memphis, TN 38112 Tel. (901) 276-7751 E-mail: ltrenthem@utmem.edu Contact 2: Sally Damron E-mail: srdamron@bellsouth.net Nashville - Support Group Nashville Celiac Support Group (CSA) Contact 1: Gary Seise, Co-chair Tel: 615-895-0398 E-mail: grseise@juno.com Contact 2: Darryl Casey, Co-chair Tel: 615-481-4445 E-mail: DarrylCasey@yahoo.com Texas Austin - Support Group Contact : Francie Kelley Alamo Celiac Austin Alamo Celiac Gluten Intolerance Group Tel: (512) 301-2224 E-mail: fkelley@austin.rr.com Internet: http://www.alamoceliac.org Brazoria County Texas Celiac Support Group Contact: Cecilia McNeil Tel: (979) 265 0819 E-mail: clmcneil@academicplanet.com Corpus Christi - Support Group Alamo Celiac Corpus Christi Contact: Susan M. Revier, Secretary Tel: (361) 855-6810 E-mail: jamesrevier@grandecom.net Dallas - Support Group Lone Star Celiac Gluten Intolerance Group Contact: Rose Mary Simmons 2603 Dorrington Drive Dallas, TX 75228 Tel: (214) 328-7286 E-mail: president@dfwceliac.org Internet: http:www.dfwceliac.org Eastland - Resource: Contact: Jill Hollywood P.O. Box 938 Eastland, TX 76448-0938 Tel: (254) 629-1299 Fort Worth - Support Group Contact: Betty Barfield, President North Texas Gluten Intolerance Group 6821 Nob Hill Dr. North Richland Hills, TX 76182 Tel: (817) 929-9227 E-mail: manager@northtexasgig.com Internet: http://www.northtexasgig.com Houston - Support Group Houston Celiac Sprue Association Janet Y. Rinehart, Chairman 13722 Ashley Run Houston, TX 77077 Tel: (281) 679-7608 E-mail: txjanet@swbell.net Chapter web site: http://www.houstonceliacs.org Lubbock - Support Group Contact: Rebecca Holland Lubbock Celiac Support Group Internet:- http://www.lubbockceliacgroup.com Midland - Support Group Contact 1: Pat Gatlin West Texas GF Awareness Group 11809 W. County Road, #54 Midland, TX 79707 Tel: (915) 563-4847 Contact 2: Lois Newbold Tel: (915) 684-4671 Contact 3: Linda Blanchard E-mail: linda@ccgs.com San Antonio - Support Group Alamo Celiac San Antonio Contact 1: Anne Barfield 606 Jackson Keller San Antonio TX 78216-7121 Tel: (210) 340-0648 E-mail: AnneBarfield@satx.rr.com Contact 2: Lynn Rainwater 5014 Gemsbuck Chase San Antonio TX 78251-4380 Tel. (210) 509-0179 E-mail: txlynnr@swbell.net Texas Hill Country - Support Group Austin Gluten-Free Friends Contact: Kay Stence 1863 Greenwood Lane Kingsland, TX 78639 Tel: (512) 632-3682 or (325) 388-3103 E-mail: kstence@marykay.com Texarkana - Resource: Contact: Marie Freeman Rt 6, Box 465-F Texarkana, TX 75501 Tel: (903) 793-1392 Utah Utah Support Groups - Website Gluten Intolerance Support Groups of Utah Internet: http://www.gfutah.org Northern Utah - Support Group Celiac Support Group of Northern Utah, a branch of the Gluten Intolerance Group Contact: Marie Kawaguchi E-mail: mkawag@msn.com Tel: (801) 732-9363 Salt Lake Gluten Intolerance Group (GIG) St. Mark's Hospital (meeting place) Pam Ward - CoChair Sandi Bigelow - CoChair Tim Coda - CoChair Marcie Coda, Branch Manager E-mail: saltlakegig@gmail.com Internet: http://www.gfutah.org Utah County- Support Group Contact: Paul Faris E-mail: pfaris@juno.com Tel: (801) 225-5828 Utah County - Support Group Utah County Gluten Intolerance Group (GIG) Contact: Robert and Amber Lee Tel: (801) 763-0977 Email: info@gfutah.org Internet: http://www.gfutah.org Vermont Bennington - Support Group Contact: Lynn Grieger Southern Vermont Celiacs RD3 Box 586 Arlington, VT 05250 Tel: (802) 375-9069 St. Albans - Support Group Contact: Suzanne Ludlam Celiac Support Group of Vermont E-mail: rsludlam@yahoo.com Virginia Alexandria, Arlington - Support Group Contact: Jerry Malitz Washington Area Celiac Support Group Email: dcmetroceliacs@gmail.com Internet: http://www.dcceliacs.typepad.com Blacksburg - Support Group Contact: John Tice New River Valley CS Support Group Blacksburg, VA Tel: (540) 951-2126 E-mail: jtice1@johntice.com Charlottesville - Support Group Contact: Amy E. Pagano, MS, RD Celia Sprue Support Group Tel: (434) 243-4666 E-mail: ap8a@virginia.edu Chesapeake, VA - Support Group Contact: Dawn Ryan Celiac Disease Foundation Chesapeake Tidewater Chapter E-mail: ctcglutenfree@gmail.com Internet: www.celiacsofva.com Richmond - Support Group Contact: Madelyn Smith Gluten Intolerance Group of Richmond E-mail: gigrva@comcast.net Richmond - Support Group Richmond Celiac Sprue Support Group Contact: William & Deborah Locke 1347 Sweet Willow Drive Midlothian, VA 23113 Tel: 804-794-7476 E-mail: csa_rcssg87@comcast.net Washington Bellingham - Support Group Bellingham Gluten Intolerance Group Contact: Kelle A. Rankin-Sunter P.O. Box 28894 Bellingham, WA 98229 Tel: (360) 332-7435 E-mail: celiac@nuwworld.com Internet: http://www.glutenfreeway.info Seattle - Support Group Gluten Intolerance Group 15110 10 Ave. SW, Suite A Seattle, WA 98166-1820 Tel: (206) 246-6652 E-mail: gig@gluten.net Internet: http://www.gluten.net Renton - Support Group Contact: Lynn Jameson E-mail: Southseattlegfgroup@yahoo.com Seattle - Support Group Seattle Celiacs Kirkland WA 98033 Tel: (425) 503-6126 E-mail: eric@seattleceliacs.com Internet: http://www.seattleceliacs.com Tacoma - Support Group South Sound Gluten Free "Encouragement" Group Contact: Gay McCray Tel: (253) 851-4610 E-mail: gmccray@centurytel.net West Virginia Huntington - Support Group Tri-State Celiac Sprue Support Group Contact: Deborah Yeager 5425 Lea Hill Dr. Huntington, WV 25705 Tel: (304) 733-5867 Wisconsin Appleton - Support Group Fox Valley Celiacs Contact: Helen Morris 1369 Graystone Court Depere, WI 54115 Tel: (920) 337-9235 E-mail: hbmorris1369@sbcglobal.net La Crosse - Support Group La Crosse Area CS Support Group Contact: Mary Lou Balts 2601 Losey Blvd. South La Crosse, WI 54601 Tel: (608) 788-7398 E-mail: baltskml@centurytel.net Madison - Support Group Group: Madison Area Gluten Intolerance Chapter (MAGIC) Contact: Aaron Avery Tel: (608) 271-4041 E-mail: aavery77@hotmail.com Marshfield - Support Group Marshfield Celiac Support Group Contact: Marshfield Clinic Nutrition Services Tel: (715) 387-5480 E-mail: carolasher46@gmail.com Internet: www.marshfieldceliac.weebly.com Milwaukee - Support Group Milwaukee Sprue Crew Contact: Bev Lieven E-mail: milcs@aol.com Wyoming Casper - Support Group Central Wyoming Celiac Association Contact: Kim Attaway P.O. Box 50124 Casper, WY 82605-0124 Tel: (307) 472-5889 E-mail: wyceliacassoc@alluretech.net
  6. Celiac.com 09/11/2014 - What’s the relationship, if any, between eosinophilic esophagitis (EoE) and celiac disease? Research studies have produced variable results. Researchers A. J. Lucendo, Á. Arias, and J. M. Teniaso recently set out to conduct a systematic review of medical literature to determine if there’s any evidence of a connection between both diseases. They used the MEDLINE, EMBASE and SCOPUS databases to conduct electronic searches with keywords relating to EoE and celiac disease. Depending on study heterogeneity, they used random-effects models as needed (I2). To assess publication bias, they used funnel plot analysis, along with the Begg–Mazumdar, Harbord and Egger tests. Their keyword search produced 197 significant study references; 30 were included in the quantitative summary, with most showing serious methodological inconsistencies. The team found significant publication bias in favor of short studies reporting positive connections between the two diseases. The prevalence of EoE in celiac patients ranged from 0% to 10.7% (I2 = 78.9%). Rates of celiac disease in EoE varied wildly, between 0.16% and 57.1% (I2 = 89%). One high-quality, prospective, randomly selected, population-based study showed a celiac disease rate of 1.1%, with no cases of EoE. Numerous quantitative summaries of celiac prevalence suffer from clinical and methodological differences. That is, they are are not similar enough to draw good conclusions. A gluten-free diet produced histological remission of EoE in 32.1% of celiac patients (95% confidence interval, 14.9–52.2%; I2 = 52.2%), which was similar to that expected for wheat elimination in EoE patients. There are not really enough valid studies to completely rule in or out a true association between EoE and celiac disease, currently available evidence does not support any such connection. In fact, the only epidemiologically valid study indicates that these diseases are not connected. Source: Alimentary Pharmacology & Therapeutics Alimentary Pharmacology & Therapeutics Volume 40, Issue 5, pages 422–434, September 2014. DOI: 10.1111/apt.12859
  7. Celiac.com Sponsor: Review

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  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. Hey everyone, this is my first post about becoming gluten free, or really it's my first time ever talking about it. I guess I'll start with the fact that I was on the verge of tears when I was reading my vegetable broth that I had bought for my dinner tonight to find that it had wheat in it. Thats when I decided I needed a little support. It's very hard to transition in the beginning and I have had a very hard time getting any support. I constantly have to bug my sister and her boyfriend, whom I live with, about keeping things gluten free like dipping their regular chips in the entire hummus container or not eating my gluten free treats I buy. Constantly getting picked on for being "difficult" or "expensive" to buy for doesn't help either. And they constantly question whether I'm telling the truth. I'm 17 and just discovered I was gluten intolerant. I have had severe anxiety and digestive problems my entire life and finally have gotten rid of those problems (still have anxiety but not as bad). My intolerance seems to keep getting worse also. Before If I would come in contact with something with gluten in it I would get a bit of a stomach ache, bloating and such. Now I get all those problems and extreme itchiness. I break out in welts and it is awful. Ive also lost a significant amount of weight and am suspect Im becoming malnourished. Not having a lot of money to buy a bunch of gluten free things has taken a toll on me and I am also a vegetarian to top it off. So ending the tangent, does anyone have any tips to make this easier on me and also does anyone have any idea what vitamins or supplements I should add to my diet?
  10. Hi! So I am in a situation that I'm sure others have found themselves in and am in great need of some advice and guidance. So my girlfriend has been exhibiting symptoms that seem to be extremely indicative of a gluten intolerance but she was just recently diagnosed with chronic fatigue syndrome by her doctor. The symptoms are so similar and I have been reading a lot of things that suggest the two disorders are linked or even that celiacs is often misdiagnosed as CFS. These are her symptoms: chronic fatigue, exercise intolerance (mostly cardio), insomnia, some digestive issues (stomach cramps, blood in stool), severe anxiety, depression, irritability, mood swings, headaches, chronic flu like symptoms, sore throat, lactose sensitivity, random case of hives, tingling in her feet, severe muscle aches in back, joint pain, hot flashes, sound sensitivity, cold feet, abnormal periods (she is on bc to control them). She also has a family history of MS and Fibromyalgia. While testing for CFS the doctor did a blood test for the transglutiminase and it was negative. But I know that these tests can be misleading or inaccurate. It is seriously affecting her quality of life, and our relationship. I want to help and I feel so lost because I can't make her better. It hurts me to see her struggling and suffering so much every day. She has some days that are better, but for the most part she is struggling to get out of bed in the morning and has to drink lots of caffiene to make it through the day and then she is too tired to do much when she gets home so she usually takes a nap for 3-4 hours. Because of the extreme fatigue and exhaustion/frustration from having to deal with all of these symptoms she becomes very irritable with me quickly. I have been researching like mad to find ways to help her. The doctors aren't of much help, they only prescribe her meds to help her sleep and something for nausea. While doing research I began to read more and more about how her symptoms could be celiacs or gluten intolerance and I tried to suggest that she try to go gluten free for a while to see if it helps and she became very angry with me and thought I was acting like it wasn't a big deal and that I didn't understand how hard it would be to do that. This made me extremely sad because I care so incredibly much and love her so I would never intentionally downplay something like that. This was before she was diagnosed with CFS, and after she was diagnosed and the meds weren't doing much I tried suggesting the gluten free idea again, I even offered to do it with her 100%, and told her that I supported her no matter what she decided to do. But she just ignored this. So, the bottom line is that she does not want to do the gluten free diet, which I completely understand. Nobody would want that. But I'm so worried about her health, and her happiness that I just want to do anything to help. I know if it was me and I knew gluten could be an issue I would immediately get rid of all the gluten in our house and start looking up recipes. I know she has a different mentality than this though. I don't know what to do. Her symptoms seem to be getting worse and worse. And I feel like she is at the end of the line as far as what doctors can tell her, so eliminating gluten and seeing if it works seems to be the best plan to getting her well right now. But how do I approach this sensitively? Any input on others who are suffering from gluten problems who could give me some insight on how she is feeling or how to talk to her about it? Do her symptoms seem like they could indicate celiacs/gluten insensitvity? So sorry for this long post, I'm just really seriously worried about her and want to do everything I can to help but everything I've done so far just seems to make things worse. Thanks so much!
  11. Hi guys I name is Andy and in 4 days I find out if I have Celiacs disease. I began showing symptoms about 5 or 6 months ago, and recently discovered my brother has Celiacs. I am currently in the process of having my blood tested, and I get the results this Friday. Since the blood test I have been following a strict gluten/wheat free diet and already have some symptoms fading. This to me is my body's way of saying 'Yes you do have it'. At the moment I've gotta say I'm not having the best of time coping with what I'm no longer allowed to have! I've joined this site today in an attempt to be able to talk to people who also have this condition just so I've got some support to hand. I hope to hear from people soon, and ill also post hear on Friday regardless of results.
  12. Celiac.com 10/19/2012 - Irish citizens with celiac disease will no longer be reimbursed for the gluten-free products they buy, under to a newly announced cutback to their health benefits. The Irish Pharmacy Union (IPU) says that new cuts to health benefits by the Irish health service (HSE) mean that many gluten-free products will no longer be reimbursed by the government, including products purchased by patients with medical cards, and those receiving long-term illness benefits. Gluten-free products that will no longer be covered include baking powder, breads, cornflakes, flour, muesli, pasta, pizza and porridge. People with celiac disease must eat gluten-free foods to avoid suffering from significant health problems. The IPU says this means that celiac patients, who rely on gluten-free products to maintain their health, will no longer receive financial support to help them cover the cost of these products. The HSE announced the controversial €130 million in cuts last spring, but made no mention that gluten-free products would be removed from the list of free items. The HSE announcement said only that 'certain products including' glucosamine, the obesity drug Orlistat, and Omega-3 Triglycerides to protect against heart disease, would be removed from the list of reimbursable products. In confirming the elimination of reimbursements for gluten-free products, an HSE spokesperson said that the agency was choosing to cut products for which there was 'doubt about their clinical efficacy.' What do you think? Are gluten-free products medically questionable for people with celiac disease? Let us know your thoughts by commenting below. Source: Irish Health
  13. 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
  14. Celiac.com 02/09/2011 - A new group focused on supporting children with celiac disease and non-celiac gluten intolerance will hold its first meeting this month, on February 19th, in Portland, Oregon. G.I.F.T.S. - Gluten Intolerant Families Teamwork & Support (www.gifts-pdx.org) will meet every other month, on the third Saturday, from 2:00 to 4:00 p.m. in the home of group moderator Wendy Cohan, RN. Meeting in a home environment will reduce costs for membership, but also offer the opportunity to hold cooking demonstrations, cupcake decorating contests, and a summer cook-out, all of which are planned for 2011. Each meeting will feature a speaker, with subjects alternating between short health discussions and more kid-friendly holiday themes and cooking and baking with children. Our first speaker will be Krista Anderson-Ross, ND, who will give a short talk on the important topic of "Nutritional Deficits in Children with Celiac Disease", and how best to address them. We'll follow that up in April with an Easter-themed party with our guest, small business owner of "Fairy Cakes". Our group website: www.gifts-pdx.org is full of information on celiac and gluten related topics, and it includes a bulletin board for sharing tips, recipes, ideas for school lunches and snacks and other parent peer-support ideas. Bring your child, bring your whole family, and help make this group whatever you want it to be. We have a small advisory committee of health professionals and parents of children with celiac disease, but you are welcome to bring your ideas to the table, literally. We plan to hold social gatherings and restaurant outings in addition to regular meetings. For more information, see the website, or email us: info@gifts-pdx.org.
  15. 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
  16. Celiac.com 05/17/2010 - Scott Adams and Ron Hoggan went on live radio last Saturday on the Love By Intuition Show with host Deborah Beauvais (Dreamvisions 7 Radio Network) in support of Celiac Disease Awareness Month. The show is broadcast live from Boston, MA on 1510 AM Revolution Boston, a progressive 50,000-watt station reaching 5 states locally, and on Energy Talk Radio in San Francisco, and it reaches over 1,000,000 listeners. The show will be re-broadcast several times and will hopefully reach many more listeners. The podcast is attached and can be downloaded or listened to from our server. Dreamvisions 7 Radio Network is holistic healing radio network with an eclectic group of radio hosts all with the common goal to help humankind by offering different modalities or programs combined with tools to bring awareness, joy and love to their listeners. Their vision is to continue to syndicate the Network of shows by having additional affiliates both terrestrial and Internet.
  17. Celiac.com 03/10/2010 - A team of researchers recently observed that monocytes differentiated with IL-15 support Th17 and Th1 responses to wheat gliadin. They discuss the implications of this discovery for celiac disease in a recent article in Clinical Immunology. The research team included K. M. Harris, A. Fasano, and D. L. Mann of the Pathology Department at the University of Maryland School of Medicine. It is understood that interleukin (IL)-15 contributes to the immuno-pathogenesis of celiac disease. However, the effect of IL-15 on APC that shape adaptive immune responses to gliadin is not well understood. Using PBMC from healthy individuals, the team demonstrated that monocytes differentiated with IL-15 (IL15-DC) produced IL-1beta, IL-6, IL-15, IL-23, TNFalpha and CCL20 in response to pepsin-trypsin digested gliadin (PTG) and activated contact-dependent Th17 and Th1 responses from autologous CD4(+) T cells. Compared with control subjects, PBMC from celiac disease patients showed lower concentrations of IL-15 augmented IFNgamma responses to PTG. So, by generating IL15-DC, IL-15 supports Th17 and Th1 responses to a dietary antigen that produces no such responses in healthy individuals.The team notes that IL-15 hypersensitivity may cause these potentially pathogenic immune responses to develop in celiac patients, but not in healthy individuals. They conclude that the pathogenesis of celiac disease is likely due in part to genetic and/or environmental factors that control IL-15 expression and responsiveness in the gut. Source: Clin Immunol. 2010 Feb 10.
  18. Celiac.com 03/19/2009 - Numerate Inc., a biotechnology company leveraging a novel drug engineering process to design lead-stage drug compounds, announced today it has received a Phase 1 grant from the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health (NIH). The Small Business Technology Transfer (STTR) award, entitled “Drug Engineering of Transglutaminase 2 Inhibitors,” will be used to support a research collaboration between Numerate and the laboratory of Chaitan Khosla, Ph.D., the Wells H. Rauser and Harold M. Petiprin Professor of Chemical Engineering and Chemistry at Stanford University. “This NIH Phase 1 STTR award validates the attractiveness of Numerate’s drug engineering process for the design of new small molecule drugs,” stated John Griffin, Ph.D., Numerate’s chief scientific officer and principal investigator of the project. “In addition, it recognizes the potential of transglutaminase 2 inhibitors for the treatment of Celiac Sprue. Professor Khosla is a leader in Celiac disease research, and we are pleased to have the support of the NIH in our collaboration with him and his laboratory.” Professor Khosla, who will serve as co-investigator for the STTR research project, added, “Transglutaminase 2 is central to the pathophysiology of Celiac Sprue, and offers a compelling target for a disease for which no pharmacotherapy currently exists. I look forward to having Numerate apply its breakthrough technology to this important problem.” Celiac Sprue, also known as celiac disease, is an autoimmune disorder of the small intestine involving intolerance to gluten proteins found in wheat and other grains. About Numerate Numerate is a privately held biotechnology company that has developed and extensively validated a drug engineering process that rapidly and cost-effectively delivers small molecule drug candidates optimized for efficacy, safety, and patentability. Numerate’s drug engineering process combines advances in computer science, statistics, and molecular modeling to address, in parallel, the factors that determine the success and failure of a drug. Numerate applies this proprietary process to design and develop small molecule therapeutics in collaboration with a variety of partners in the pharmaceutical and biotechnology fields. For more information, please visit www.numerate.com.
  19. 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
  20. The following letter was prepared by Nancy of the Gluten Intolerance Group in Seattle, WA: Directions: Find your representatives e-mail addresses at: http://www.house.gov/writerep/. Highlight the letter below with your mouse. Copy (Control-C) it to your notepad. Paste it (Control-V) into an e-mail to them, or into the e-mail form at the site above. Representative or Senator Address Honorable (Senator) Or Distinguished (Representative) I urge you to cosponsor the legislation that Representative Nita Lowey and Senator Edward Kennedy will introduce to tighten the regulation of food-allergens. Millions of Americans have food allergies, and each year about 150 people in the United States die from anaphylactic shock caused by a food allergy. Metabolic disorders, such as gluten intolerance, also require careful and strict elimination of certain foods from a persons diet to maintain normal health. Over 1.3 million people in the USA suffer from gluten intolerance, which requires strict elimination of wheat, rye and barley from the diet. A 2000 survey conducted jointly by the Food and Drug Administration, Minnesota, and Wisconsin found that one-quarter of the bakery products, candy, and ice cream sampled were contaminated with peanut or egg ingredients that were not declared on the product labels. Undeclared allergens may cause immediate reactions, or slow destruction of the intestine and long-term health complications associated with malnutrition. Representative Lowey has said that the legislation would require companies to list the major allergens (including those in spices, flavorings, and colorings) by their common English names and to include a telephone number on the label that consumers could call for more information. The legislation would also require manufacturers to better prevent cross-contact between products made in the same facility or on the same production line, allow the Food and Drug Administration to assess penalties against firms that violate the food allergen requirements, and require the Centers for Disease Control to establish a system for tracking food allergy-related deaths. In addition, Congress should also require companies to indicate on labels that the food may contain allergens when the possibility of contamination cannot be totally excluded. Rye and barley must be included in the list of allergens declared on labels. This addition will better serve all persons with allergies and intolerances. I urge you to cosponsor this important public health legislation, with the above-recommended addition. Sincerely,
  21. The University Of Maryland Center For Celiac Research (CFCR) was established as an impartial, non-profit organization to improve the lifestyle of Celiacs through scientific research. As many of you know, we are presently conducting a nationwide six center serological study to determine the prevalence of Celiac Disease in the United States. Scott Adams’ call for "... a conference among the different Celiac organizations to reach an agreement on what is safe and what is not?" sound like a reasonable approach to at least beginning the discussions essential to resolving this very difficult problem. Ann Whelan, in her May-June issue of "Gluten-free Living" enclosed an insert entitled "Time to Act...Unite Now". Maybe this single issue is a good place to start. We at the CFCR would like to offer our impartial auspices in putting together such a "Celiac Food Forum". Inviting food scientists, dieticians, nutritionists, support group leaders and interested Celiacs from the United States, Canada and other countries to discuss in open forum these very important issues. Please let us know if you think we may be of service by responding to Bob Levy, CFCR Volunteer, via his e-mail address "bobolevy@erols.com" or by calling him at 410-486-0292. Dr. Alessio Fasano and Dr. Karoly Horvath, Co-Medical Directors - University Of Maryland Center For Celiac Research.
  22. 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
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