Celiac disease support group

Celiac Disease Support Groups

Canadian Celiac Association
Mission: The Canadian Celiac Association is a national organization dedicated to providing services and support to persons with Celiac Disease and Dermatitis Herpetiformis through programs of Awareness, Advocacy, Education and Research.
Visit the Canadian Celiac Association

Celiac.com
Mission: Celiac.com provides important resources and information for people on gluten-free diets due to celiac disease, gluten intolerance, dermatitis herpetiformis, wheat allergy, or other health reasons. Our purpose is to raise celiac disease awareness, and to provide people who have it with enough information to get diagnosed and treated so that they can begin to lead more comfortable and healthy lives.
Visit Celiac.com

Celiac Community Foundation of Northern California
The Celiac Community Foundation of Northern California provides evidence-based support to those with celiac disease and non-celiac gluten sensitivity in the greater San Francisco Bay Area. The foundation carries out this mission by heightening awareness; educating the medical community, food purveyors and the general public; administering Camp Celiac; and by offering group and individual support.
Visit the Celiac Community Foundation of Northern California

Celiac Support Association
Mission: To provide information and educational materials for persons with celiac disease and dermatitis herpetiformis and for parents of children with celiac disease. Made up of six regions with chapters and resource units across the United States.
Visit the Celiac Support Association

Gluten Intoleranance Group of North America (GIG)
Mission: GIG’s mission is to increase awareness by providing accurate, up-to-date information, education and support those with gluten intolerance, celiac disease/dermatitis herpetiformis, their families, health care professionals and the general public.
Visit the Gluten Intolerance Group

HealtheTreatment.com
HealtheTreatment is an online media company that works with patients, caregivers, doctors, educators, and healthcare companies to collect and share information. Share your symptoms, join discussions, and help improve the quality of the patient-doctor dialogue.
Visit HealtheTreatment.com

Lancaster Area Celiacs
The leadership team of the Lancaster Area Celiacs Support Group has decided to disband the group. The October 16, 2018 meeting was our last. Improved food labeling and availability of gluten free products on grocery store shelves, as well as a wealth of other resources to help identify and deal with gluten sensitivity issues, have helped reduce the need for the group.
Visit Lancaster Area Celiacs

St. Christopher’s Hospital for Children: Celiac Support Group
The Celiac Support Group at St. Christopher’s Hospital for Children is a fun-filled meeting for families affected by celiac disease. This is an ideal group for parents looking to introduce their children to other gluten-free kids. The group meets the third Wednesday of every month at St. Christopher’s Hospital for Children and is facilitated by registered dietitian, Rachel Lenhoff.
Visit St. Christopher’s Hospital for Children

Support groups and research centers throughout North America offer further information about celiac disease, gluten intolerance and gluten sensitivity. Many also offer regional or local support groups to connect with other gluten-free individuals in your area.

Beyond Celiac

Canadian Celiac Association

Celiac.com

Celiac Center at Beth Israel Deaconess Medical Center

Celiac Center at Jefferson University Hospitals

Celiac Disease Center at Columbia University Medical Center

Celiac Disease Foundation

Gluten Intolerance Group of North America

Mayo Clinic

National Center for Diabetes and Digestive and Kidney Diseases

The University of Chicago Celiac Disease Center

Resources for Kids

Beyond Celiac Kids Central

Center for Celiac Disease at Children’s Hospital of Philadelphia

Center for Celiac Research and Treatment at Mass General

Gluten-Free Living magazine

Camps for Kids

Click here for a list of summer camps for children. Some camps are strictly for gluten-free children while others serve a varied group of campers. Check with each camp for more information.

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Celiac Disease Organizations

Academy of Nutrition and Dietetics (formerly American Dietetic Association or ADA)
120 South Riverside Plaza, Suite 2000
Chicago, IL 60606–6995
Internet: www.eatright.org

Mission: To empower members to be the nation’s food and nutrition leaders.

Services provided:
Accreditation standards
Educational programs and meetings for health care providers
Information for the media
Publications for health care providers and patients
Registered dietitian locator
Recipes

American Celiac Disease Alliance (ACDA)
2504 Duxbury Place
Alexandria, VA 22308
Phone: 703-622-3331
Email: [email protected]
Internet: www.americanceliac.org

Mission: To represent and advocate on behalf of the entire celiac community—patients, physicians, researchers, food manufacturers, and other service providers.

Services provided:
Advocacy and public policy
Resources

Mission: To advance the science and practice of gastroenterology.

Services provided:
Advocacy and public policy
Certification activities
Continuing medical education (CME)
Educational programs and meetings for health care providers
Gastroenterologist locator service
Information for the media
Publications for health care providers and patients

Mission: To drive diagnoses of celiac disease and other gluten-related disorders and improve the quality of life for those on a lifelong gluten-free diet through empowerment, education, and advocacy.

Services provided:
Advocacy and public policy
Continuing medical education (CME)
Educational meetings and events for health care providers
Publications for health care providers and patients
Resources for children
Recipes
Volunteer opportunities

Mission: To provide services and support regarding celiac disease and dermatitis herpetiformis through programs of awareness, education, advocacy, and research.

Services provided:
Educational events and meetings for health care providers and patients
Public service announcements (PSAs)
Publications for health care providers and patients
Resources that includes recipes
Support groups
Celiac camps for kids
Sample diets for celiac disease management
Volunteer opportunities

Mission: To help individuals with celiac disease and dermatitis herpetiformis worldwide through research, education, and support.

Services provided:
Educational programs and meetings for health care providers
Publications for patients and family members
Support groups
Resources for children
Celiac camps for kids
Recipes
Sample diets for celiac disease management
Volunteer opportunities

Mission: To provide support to people with gluten intolerances, including celiac disease, dermatitis herpetiformis, and other gluten sensitivities, so they can live healthy lives.

Services provided:
Advocacy
Gluten-free restaurant database
Product certification and accreditation
Publications for patients
Recipes

NASPGHAN Foundation for Children’s Digestive Health & Nutrition
1501 Bethlehem Pike
P.O. Box 6
Flourtown, PA 19031
Phone: 215-233-0808
Email: [email protected]
Internet: www.naspghan.org or www.gikids.org

Mission: To advance understanding of normal development, physiology, and pathophysiology of diseases of the gastrointestinal tract and liver in children; improve quality of care by fostering the dissemination of this knowledge through scientific meetings, professional and public education, and policy development; and serve as an effective voice for members and the profession.

Services provided:
Advocacy and public policy
Educational programs, meetings, and events for health care providers
Pediatric Gastroenterologist locator
Publications for health care providers and patients
Support groups
Resources for children
Celiac camps for kids
Sample diets for celiac disease management

Society for the Study of Celiac Disease
3300 Woodcreek Drive
Downers Grove, IL 60515
Phone: 630.522.7886
Email: [email protected]
Internet: www.theceliacsociety.org

Mission:
To advance the fields of celiac disease and gluten-related disorders by fostering research and by promoting excellence in clinical care, including diagnosis and treatment of patients with these conditions.

Services Provided:
Celiac Disease Diagnosis in Adults (guideline)
Research grants
Celiac Disease Unit Recognition Program

Celiac Disease Foundation and Gluten Intolerance Group Partner to Expand Support and Research Efforts

In honor of May Celiac Awareness Month, Celiac Disease Foundation (CDF) and the Gluten Intolerance Group (GIG) are proud to announce a partnership that will improve the health and well-being of the celiac disease and gluten-free communities. In order to create the most comprehensive nonprofit source of education, research, advocacy, social networking, and support for the millions of people living with celiac disease and non-celiac gluten/wheat sensitivity, CDF is transitioning the operation of its Support Group program to GIG and GIG is collaborating with CDF to promote the iCureCeliac® patient registry and patient enrollment in research studies and clinical trials.

GIG will provide Support Groups the state-of-the-art logistics, materials, organizational tools, and support that GIG is known for and that everyone in our shared community richly deserves. CDF will expand its efforts to improve the diagnosis rate for celiac disease through digital tools for patients and providers, and to increase patient participation in research to further empower the search for treatments and a cure. Both organizations will continue to offer the programs, services, and tools upon which millions rely.

The Gluten Intolerance Group has been empowering the gluten-free community through consumer support, advocacy, and education since it was founded in 1974. GIG’s Support Group program, Generation GF and GIG Branches, consist of volunteer-driven support groups for children and adults throughout the U.S. and internationally.

Since its founding as a celiac disease advocacy organization in 1990, Celiac Disease Foundation drives diagnosis, treatment ,and a cure through programs for advocacy, education, and research. Hosting the nation’s only celiac disease and non-celiac gluten/wheat sensitivity patient registry, iCureCeliac®, CDF collaborates with patients, researchers, and clinicians to better understand and ultimately cure celiac disease.

The prevalence of celiac disease and non-celiac gluten/wheat sensitivity has grown dramatically over the past few decades. With millions of people affected, but a majority undiagnosed and suffering, there is an urgent need for widespread patient and provider education, and investment in research. For those diagnosed, the guidance and emotional support provided by Support Groups can ease the isolation imposed by the only treatment currently available, the gluten-free diet.

Thanks to this partnership, CDF and GIG can together support our community while also advancing treatments and, eventually, a cure.

If you are interested in joining an existing GIG Support Group or starting a Local Branch or Generation GF for kids and teens in your area, please contact Bethany Trainor, GIG Support Groups Manager at [email protected] or by phone at 253-293-4286.

To add your data to the iCureCeliac® patient registry visit celiac.org/icureceliac. For more information on research activities, please contact Talia Machlouf, CDF Research and Advocacy Director at [email protected] or by phone at 818-716-1513, x110.

Celiac Disease Foundation and the Gluten Intolerance Group are deeply pleased to begin this collaboration to benefit our shared community.

February is the month of ‘love’ and nowhere is that more apparent than in gluten-free and celiac volunteer-run support groups.

Listed in no particular order, have a look to see where we’ve been made to feel at home.

If you have found online support not listed here, tell us about it and we’ll add them to our list!

Thank you!

Closed Facebook Groups – Ask to Join!

Celiac Parents and Parents of Celiacs (created June 2014 – 1000+ families)

  • Care & share. Set the topic & the tone. Invite others. If you are from Vancouver Island, you’ll receive daily updates on GF sales & events.

Living Gluten Free in Canada – (created March 2013 – 3200+ members)

  • This is an open forum to share information, questions and options for those of us living gluten free in Canada.

Dermatitis Herpetiformis Group – You Are Not Alone – (created September 2013 – 1600+ members)

  • For anyone having to put up with DH. And feeling like no one else in the world understands! Any advice here is not given professionally and it’s always best to consult your health care professional.

Gluten-Free/Celiac Support and Share Network – (created February 2016 – 70+ members)

  • Recipes, product and restaurant reviews in the Winnipeg area.

Brittany Angell’s Special Diet Group! – (created January 2019 – 1100+ members)

  • A group to support one another through allergen free / or special diet eating! Any allergy or diet- we have resources and ideas! Gluten free, Vegetarian. paleo, Keto, Low Carb,Autoimmune Paleo! Recipes shared including: Grain-Free, Dairy Free, Egg – Free, Nut-Free , Soy-free, and Sugar Free!

Celiac Vacation Group – (created September 2017 – 1500+ members)

  • This page started out as the Celiac disease support group cruise. We have widened the field and have now changed the name to reflect that. We hope to plan a trip for members some time in 2019.

CANADIAN Parents of Children with Celiac Disease and Type 1 Diabetes – (created December 2014 – 250+ members)

  • A place for Canadian Parents to discuss celiac and type 1 as well as suggestions for foods, etc.

Parents of Celiac Teenagers – (created November 2017 – 400+ members)

  • For the parents of teenagers with Celiac Disease. A place to share, vent, and maybe even learn from one another as we navigate this unique time with our kids.

Gluten Free Edmonton Support Group – (created December 2018 – 900+ members)

  • A place where the Celiac/Gluten Free Community in Edmonton can support each other.

Celiac Disease Support Group – (created April 2016 – 23,000+ members)

  • This is a Celiac Disease Support Group for individuals who have Celiacs Disease or family members who do. We come together to share information, answer questions, share recipes, ideas & just support each other.

Celiac Kids – Victoria & Westshore – (created August 2018 – 30+ members)

  • A group for celiac kids to get to know one another. We will focus on get togethers of various kinds/sizes, as the main purpose of this group is for celiac kids to meet other kids who face similar situations, in the hopes that they will feel less alone, and have friends they can talk to about dealing with issues that arise at school, socially, etc.

Edmonton Celiac Family Support – (created August 2015 – 300+ members)

  • A group for anyone from newly diagnosed to expert families living with Celiac Disease. Ask questions, share resources, share recipes, vent… but be kind.

Celiac Kids in Winnipeg Group – (created September 2017 – 90+ members)

  • This group is for Celiac Parents and Parents of Celiac Children in the Winnipeg and Vicinity Area. This is a support page for living gluten free.

My Gluten Free Kitchen – (created November 2018 – 650+ members)

  • I’m sharing my experiences and recipes baking GF. Some huge successes, some dismal failures all shared here with recipes. I’m open to selling baking as it’s available or by an arranged special order.

Gluten-Free Victoria – (created December 2013 – 80+ members)

  • This is a group for people who live in Greater Victoria, British Columbia to share information about their best gluten free foods or products. Feel free to share your favourite gluten free recipes, post restaurant reviews/suggestions, share travelling tips, and whatever else you want.

Open Pages

Gluten-Free Adventures with Kids – (created April 2018)

  • Helping parents of gluten-free kids ensure they don’t miss out on the joys of travel and life’s other great adventures.

Jen GF and Losing It – (October 2017 – 270+ followers)

  • Celiac, Living a Gluten-Free life … working hard to be healthy and fit! Hoping to inspire and support people struggling. Married and Mom to 3 daughters.

The Celiac Scene – (created April 2009 – 6200+ followers)

  • The Celiac Scene is your premier resource for fabulous gluten-free living in Victoria, Vancouver Island & the Gulf Islands. Owned & operated by celiacs, we guide you to restaurants we trust and local gluten-free products we love! We even tell you where to purchase them, at the very best prices. Enjoy national ‘celiac’ news, local reviews and non-stop gluten-free event notices. The Celiac Scene is your gateway to Gluten-Free Paradise!

Do you have a gluten-free group you know and love? We’d love to learn about them, too! Please comment below or email

How to Find a Celiac Support Group… Or Start Your Own!

A recent diagnosis of celiac disease can be scary and isolating. You may suddenly find that the world around you feels like it’s loaded with gluten landmines. The kitchen, the grocery store, restaurants, parties, travel…

The combination of these can very overwhelming when you’re new to gluten-free living, instead of fun or exciting. Well, finding a good celiac support group can be just the remedy you need.

The internet is a fabulous source of support, but there’s something very special about chatting (and eating) with other celiacs live and in person. Fortunately there are celiac support groups all over the United States, and all over the world!

There’s no better place to get emotional support, learn about which local restaurants are safe to eat in, sample new gluten-free products, exchange recipes, or get a referral to a knowledgeable doctor or nutritionist. There are so many benefits to being part of a celiac support group.

Even for people who’ve had celiac disease for a long time, celiac support groups can be great social opportunities and help keep you in the loop about new medical developments, new gluten-free foods on the market, and more. You will also have the opportunity to support newly diagnosed celiacs by sharing your own experiences, which can be very gratifying.

How Do I Find a Celiac Support Group?

Try these websites to find support groups near you. Also try contacting local hospitals, which often host these groups, or look for flyers at health food stores and restaurants that serve the gluten-free community.

  • Local Celiac Support Groups in the United States
  • Celiac Support Groups in Canada
  • Raising Our Celiac Kids (R.O.C.K.) Support Groups for Parents of Celiac Kids

Don’t forget to look on meetup.com to see if there are any local gluten-free, food allergy, or celiac disease meetup groups near you. These groups sometimes don’t list themselves with the directories of support groups because they are sometimes less formal.

What If There’s No Celiac Support Group Near Me?

You have two options. The first is to look for online support, and the second is to start your own! Let’s look at both options.

Here are some online celiac support groups:

  • Gluten-Free Faces Online Community
  • Celiac.com Forums

A simple internet search can also find you gluten-free blogs throughout the world, including some that may be based in your region.

Here are some steps for how you can start your own celiac support group:

  • Find a place to meet that is convenient for a sizeable population of people. Common choices include hospital meeting rooms, church or synagogue rooms, rotating among different gluten-free / celiac-friendly restaurants, or even the dining area at a Whole Foods or other health food store.
  • Set a meeting time and date, and get the word out. Do so via Facebook, Craigslist, local newspapers, gastroenterologists and nutritionists in the area, hospitals, schools, community centers, health food stores, community e-mail lists, or grocery store bulletin boards. You can create flyers or postcards, or stick to online publicity to save money and time. A combination of both is ideal.
  • Decide upon activities and agenda items for the first meeting. Make sure to include ample time at the beginning for people to introduce themselves and at the end to set the agenda and date/time for the next meeting. You might want to invite a speaker that specializes in celiac disease or the gluten-free diet or have a recipe swap where everyone brings in multiple copies of their favorite gluten-free recipe and then each person leaves with a pile of new recipes from other members.Some groups do cookie swaps, share samples donated by grocery stores or gluten-free food companies, have cooking demonstrations, organize fundraisers or awareness events, and more. Don’t forget to offer gluten-free refreshments!
  • Keep the momentum going. Make sure to get everyone’s phone and e-mail address at each meeting and keep some kind of e-mail list or Facebook group going so that people stay in touch and stay excited about the group. Delegate, and eventually create a structure to the group so that one person brings refreshments, another plans programming, etc.

If you want to make your job easier, and gauge interest in the group before you set a meeting date, consider using meetup.com. It’s an easy way to get the word out about your group and connect with other locals who are interested. You can even “crowdsource” (brainstorm event ideas among the group) and poll people on times/locations before setting up a meeting or other event.

If you need help setting up your support group, consider contacting the National Foundation for Celiac Awareness for help.

Find Support

Support groups are a valuable resource for the newly diagnosed as well as the seasoned Celiac & non-celiac gluten-sensitive community. By attending local support group meetings and seminars you will gain important information on the latest in medical research, dietitian recommendations, useful tips for living a healthy gluten-free lifestyle, and so much more. Sign up for a workshop on the 1, 2, 3’s of living gluten-free or a demonstration on how to prepare delicious gluten-free breads & desserts! Support Group meetings are a wonderful venue where you can chat with others on a similar Celiac journey. Take your spouse, a friend, or go solo. Consider volunteering! Our list below ranges from larger, organized groups to smaller, intimate settings.

Note to Local Support Group leaders: If you have updated contact information, please let us know so we will have the most up-to-date info available for our website visitors.

(Visit our Resources page for more helpful information)

National Celiac Organizations:
Canada

Canadian Celiac Association http://www.celiac.ca/

United States

The American Celiac Disease Alliance (Spanish translation available) http://www.americanceliac.org/ Celiac Disease Foundation http://www.celiac.org/ Celiac Support Association (Spanish translation available) http://www.csaceliacs.org/ Gluten Intolerance Group of North /America http://www.gluten.net/ Beyond Celiac (formerly known as National Foundation for Celiac Awareness) http://www.celiaccentral.org/About-NFCA/19/ Raising our Celiac Kids (R.O.C.K.) http://www.celiackids.com

Other Sites for information on Pediatric Celiac Disease: http://www.gikids.org/content/3/en/celiac-disease

Find Foreign Celiac Organizations here: http://celiaccorner.com/foreign-celiaccoeliac-organizations-support-groups-3/

Other useful websites to visit for celiac info and support:

American Dietetic Association

National Institute of Health Celiac Disease Awareness Campaign

U.S. Celiac Support Groups by State

(Note: Contact information can change, apologies for any outdated info. If you are are aware of any revisions to support groups, please feel free to email CeliacCorner at: [email protected])

A – C

D – G

H – L

M – O

P – Z

Notes:

CSA – Celiac Sprue Association GIG – Gluten Intolerance Group of America You can also search here for support groups in your area: http://celiacdisease.meetup.com/

Visit our Resources page HERE.

Don’t go it alone! These are groups that I know of in the Minnesota ares. Feel free to let me know if there are updates or other groups you know about, and I will add it to the list. Thanks!

Updated 8-16-09

Anoka County Celiac Support Group: Meetings the second Saturday of each month, 10AM-noon. Bring your questions, ideas, and a gluten-free treat and its recipe to share!

  • Location: Anoka County Library, Rum River Brand, Co Rd. 116 and 7th Ave, Anoka
  • Contact Margaret “Mike” Douville, [email protected]q.com at 763-421-3656 or Sandy Carroll 763-427-6965

Celiac Friends Twin Cities Support Group: Serving Minnetonka and Western Twin Cities Suburbs. 
Meets the third Tuesday of each month at Ridgewood Church 4420 Hwy 101, Minnetonka at 6:45 p.m. 
Contact: Lynn Shadle Gabriel [email protected] , Julie Melin 612/798-5720 or [email protected] , Elizabeth Hayes 763/551-7920 or [email protected], Ken Huiras 952/925-1737 or [email protected] , Darcy Gautsch [email protected] , Carol Ansolabehere 952-934-8940 or [email protected]

Crookston, Minnesota: We meet the third Monday of each month at Riverview Hospital.
Meeting Room One at
5:30 PM- 6:30 p.m. 
Contact Mary Bratrud 218-281-9553, or email: Sr. Ruthann at [email protected]

Can’t Eat Wheat Support Group – Northfield: Meets the first Monday of Feb/Apr/Aug/Oct/Dec.

  • Location: The new Northfield hospital, located on the north side of town at 2000 North Ave. County Roads 23 and 19. Meetings take place in the lower level conference room.
  • For more information call Jody Friedow at 507-663-6071 [email protected]

Nothland Celiac Support Group: http://northlandceliacs.fastmail.fm/

Red River Celiac Support Group: Fargo, ND www.redriverceliacs.org

R.O.C.K. (Raising Our Celiac Kids) Twin Cities A non-profit support group for families with children who have celiac disease. Support, guidance and sharing of recipes are part of the two monthly meetings:

SE Minnesota Celiac Support Group: www.semnceliacs.org For meeting dates, times and location, Gail Thurnau, [email protected] phone 507-391-1674.

St. Cloud Celiac Support Group: Meetings first Tuesday of each month from 7-9 p.m. at Bethlehem Lutheran Church, 4310 County Road 137, St. Cloud. Bring questions, ideas, and a Gluten-Free treat (and its recipe!) to share. Contact Sylvia Raschke at 320-685-3007 or [email protected] or Faith Pavkovich 763-263-6387 or [email protected]

St. Croix Valley Celiacs (Hudson, Wisconsin): Meetings are held at the Hudson Hospital on the 3rd Tuesday of the month, 6:30-7:30 PM. Contact Pam Brokaw at 715-377-1002 or [email protected]

The Woodbury Eastside Celiac Support Group’s (WECSG): Meetings typically scheduled for the THIRD THURSDAY of each month at 7 p.m. at the Woodbury Allina Health Clinic (Radio Drive and Valley Creek Rd.) No meetings are held in June/July/August/December. Contact Information: Gloria Read—651/730-7514,

Chris Ripka—651/768-7231

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