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    Are Celiac Support Group Numbers Dwindling?


    Bev Messner
    • Journal of Gluten Sensitivity Autumn 2011 Issue

    Are Celiac Support Group Numbers Dwindling?
    Image Caption: Image: CC--Luisangel

    Celiac.com 08/04/2018 - December 16, 2000, a date that is etched in my mind forever. My husband and I went out for dinner with friends and returned to their home to play some cards for the evening. By around 9 p.m., I noticed my stomach rumbling and I began to make many trips to the bathroom with diarrhea. In fact, it was the beginning of a month-long siege of severe diarrhea. Up until that day, I never had any problems with digestion, bowel problems, or food issues. But suddenly my life was changing. After about four days, I saw my family doctor who started me out with a course of Flagyl, which did nothing to stop the diarrhea over the ensuing week. Following that was my visit to the ER, only to be told to follow up the next morning with my family doctor. When I showed up without an appointment, he told his nurse that he didn’t know what to do with me, so he didn’t see me at all. I was pushed off on the nurse practitioner, who was so sure her treatment would work that all I had to do was consume 2 TBS of water every 2 hours for 2 days, guaranteeing I would be better. My heart knew it wasn’t so, and the continued diarrhea proved it. I was losing one to two pounds a day, but no one was even paying any attention to my weight changes on each visit. After three weeks and another subsequent visit to the ER, I was down 25 pounds.

    A visit with a gastroenterologist was a huge waste of time. All he could think of doing was a colonoscopy and maybe three weeks more of Flagyl. I told him that in three weeks I would be dead. I refused the colonoscopy and walked out.

    All during this month, I could not eat a single thing without consequence, and by the end of the month, even water went straight through me. I did the BRAT diet (bananas, rice, applesauce, toast), but mostly stuck to the toast with a bit of butter on it. Seeing that it didn’t work, I stopped eating altogether. My husband thought my downfall with the BRAT diet was that I was spreading butter on the bread. How little we knew!!

    The visits to all the doctors and ER’s were worthless, and I grew weaker by the day. I had to give up work during this time and spent most of my days in a recliner. It was the holidays and going out to eat meant I was drinking water while everyone else ate such wonderful-looking foods. After the first couple of weeks, my strength was zapped. Taking a shower wore me out, and drying my hair left me breathless. I needed to take 15 minute breaks trying to recover just so I could continue. I confided in my son that I didn’t feel I was going to live much longer, but I could not say those words to my husband. He was angry that no one was figuring out what was wrong with me. I downplayed how sick I was, but I am sure he began to wonder how badly things were going for me.

    Taking matters into my own hands, I called a friend who worked for a neurosurgeon. A new doctor had just joined the practice and I thought perhaps he came from somewhere else in Ohio. To make a long story short, he grew up in Ohio and did his training here so he was able to contact those old teachers of his and get me admitted to their hospital about an hour away. Keep in mind that this man did not know me, but he had the presence of mind to know things were quite serious. Within an hour, I was at his teaching hospital and being admitted. I stayed in the hospital for five days and was now down about 30 pounds. I was nothing but a bag of bones. I took a book with me to read. How ironic it was that it was Stephen King’s novel, A Bag of Bones! At least I could make some jokes about it when a nurse or intern would stop to see me. Finally a gastroenterologist came to my room on my second day of admission and spoke with me for about 5 minutes and felt he knew what the problem was. He asked me why no one in my hometown could figure anything out in three weeks’ time, and he knew in 5 minutes. A subsequent endoscopy proved his suspicions of celiac disease.

    Then came the hard part: The Gluten Free Diet!!! A dietician handed me about 30 pages of information, all of which made no sense to me. I was told to go on the internet. The first thing I did was cry! My husband and I made a trip to the grocery store and spent over two hours reading labels. I knew of no one in my area that was familiar with celiac disease. In the first two weeks home, I ate 5 jumbo bags of Lay’s Potato Chips. I didn’t know what else to eat and was literally starving to death. About four weeks into the diet, realization set in about this diet and the tears came again. I just didn’t want this disease anymore as it was much too difficult to handle.

    Since no one locally could help me, I joined a support group an hour away and went once a month. It was okay, but it really didn’t fulfill my needs. It was more of a social club and I needed speakers and educators. That was when I decided to start my own group less than 3 months into my diagnosis. I took in everything I learned at the group I attended, figured out what was missing, and then decided how I wanted to format my own meetings. I had the local newspaper write a story about celiac disease and my desire to start a group. Thirty people contacted me and the group began. The very first meeting had 15 people attending, and we had samples from Kinnikinnick. Everyone thought they had died and gone to heaven, as they had all been settling for whatever was available in the local health food stores. From that point on, I never looked back and never cried again about having this disease. I now knew what it was that I needed to do, and it was to help others so they didn’t go through the same trials and tribulations that I experienced.

    Over the next ten years, our small town had a support group. We didn’t need to drive an hour to a big city to get help. We had it here every month. Each year the numbers grew with more and more people coming through the group. Our meetings consisted of passing out the monthly handouts and any articles I gleaned from various publications. We would go over all the information that was passed out, discussing it along the way. As soon as that part of the meeting was finished, usually within about 15 to 20 minutes, we turned to social discussion about anything and everything. We also had speakers….lots of speakers!! We went to conferences. We had reporters in at least 3 or 4 times to do stories. We did about 13 half-hour radio shows over those years with great success. We had Gluten-Free days once a year at the hospital. We did about 9 years worth of walks…..all small in numbers but large in spirit. We had a booth for a week at our local fair for about 4 years and gave out information. Some members did a health fair occasionally. We had annual picnics and Christmas dinners. We were getting the word out and people were coming to us. Our most fantastic years were 2006 through about 2009. We were averaging up to 26 people a month. We had a low of 15 and a high of 44 in 2008. It was a great time and we all looked so forward to learning as much as possible during each meeting and telling others of our experiences eating out, shopping, and cooking, etc. At the end of each of our meetings, we would sample what others had brought in, grab a copy of the recipe if we were interested and sit back down and talk amongst ourselves until we just finally had to go home!

    Everyone in the group was well educated. Books and other resources were recommended through the group and the knowledge grew. Meetings with speakers were well attended and appreciated.

    But how many times can you ask the same speakers to come again and again? Many were three-time repeaters, which was good because we always had new members. Our resident dietitians came monthly and sometimes spoke as well as local doctors and gastroenterologists. We also had a physician speak who was celiac. He had visited our group at least three times. Connie Sarros, a cookbook author, came to our meeting three times. Our speakers brought in many people, but I began to see a trend happening. In the later years, the speakers weren’t drawing as many people and the attendance at regular meetings began to dwindle. It wasn’t a whole lot to start with, but the monthly average dropped in 2009, 2010, and even worse three-fourths of the way through 2011. We have come full circle and are getting back down towards the numbers we originally began with at the first meeting – 15!

    As a result of what I was seeing, along with what was happening with two other support groups in neighboring counties, I could tell that the attendance was dropping off everywhere. A new group that was only about two years old brought in about 15 their first night and then it dropped severely, sometimes with only 1 or 2 showing up. We put our heads together trying to figure out what was going on. There had to be answers. The question was whether we were going to quit having meetings, have them quarterly, every other month, or perhaps just send information via email. But what would happen to those people who relied on us and did not have computer access???

    I turned to the Listserv and threw out the question, asking other group leaders and members to respond. I wanted to know if they saw the same trend happening in their area. It was a resounding YES from over 60 responses that I received.

    Here are some reasons why people were not attending meetings:

    • Easier to find GF food on their own.
    • Some come for the information packets, never to be seen again.
    • Gas prices.
    • Unemployment.
    • The family is busy with their own/kids schedules.
    • After a few months or years, they feel confident to be on their own.
    • A few disliked the leaders, feeling they either monopolized meetings or couldn’t control them.
    • Some didn’t want to deal with the diet.
    • Summer is a bad time.
    • Some didn’t care for the agenda: wanting only health information, not cooking classes or social hour.
    • Others only wanted the social aspects of the meeting and didn’t want to listen to other information.
    • Seating arrangements made some feel like they were at a lecture, seated in rows rather than at tables.
    • They use the internet more now, have cell phone apps or go on facebook.

    The following are issues voiced by group leaders:

    • People do not want to come to meetings every month.
    • Many are not compliant with the diet and don’t take it seriously.
    • No one wants to volunteer to help out. This could involve activities the group does, such as walks, publicity, taking over a meeting occasionally, or even staying to help clean up and put things away.
    • Getting burned out by having to do everything themselves.

    I then decided I should survey my own support group. I did it anonymously via the internet so that everyone could answer honestly without worry. I wanted to find out what my own group thought about these same issues so that I could decide on the future of our group by the year’s end.

    I sent the survey to approximately 104 people. These were people who had contacted me over the years, either via email, coming to some of the meetings, or perhaps just a telephone conversation. Fifty people did the survey. The results were quite interesting and are listed below:

    44% said they have only attended between 1-5 meetings, and 23% said 13 or more. The reasons they do not attend showed 46% very comfortable with the diet, and 35% responded that their schedules were too busy to attend. Some used the group’s website while others found their information online.

    The leadership and presentation of materials was rated as excellent. The discussion time was rated as good, but many wanted more time discussing issues. 100% felt the information they received was helpful in managing their diet and understanding celiac disease.

    Some felt the meetings could be quarterly, but 75% stated they would not be lost if the meetings folded. At least 25% of the respondents said they never use our website to read the monthly handouts.

    When asked about the need for support groups, 45% said there is a real need, while 38% stated they are nice to have around when you need them. Another 13% said they only needed them to get started on the GF diet.

    An overwhelming 70% felt the best format for meetings was educational with discussions as opposed to having just a social hour with discussions.

    Yet with all these answers above, it still comes down to that one person who is newly diagnosed and coming to us begging for help. How do we turn our backs on them??? I don’t think we can. I know I can’t. I have not arrived at an answer for myself, but many of the things I am considering might be having meetings either every other month or quarterly, or not having any meetings at all during the winter when I travel to Florida and have no one to take over. Even when I was in Florida, I did all the paperwork for the meetings, but attendance was down even more dramatically and those helping me had a hard time trying to run the meetings as they were not comfortable speaking in front of a group of people.

    So what decision will I come to?? I don’t know yet, but I have given myself until December of this year to make some kind of decision. We are still needed, but I just don’t think it is to the extent that it used to be five or ten years ago. It is not a hardship anymore having celiac disease because so many manufacturers are on board with GF products. It is so much easier, but there are still tiny loopholes in the diet that we need to help the newly diagnosed plug up and not make mistakes that could cause them to be sick.

    We will never be without the Internet, telephones, or other means of communication for obtaining information, but finding the correct information that is not outdated will sometimes be a challenge to a person searching on their own. So much is out there, but I think it still takes some form of a support chain with very strong links to help others when they call. I think I have that with my group, even if we should ever disband in the future. I am the information researcher, but I know who to send people to when they have questions regarding baking as we have two of the best bakers around, not to mention some others locally who will bake for a price. I know the parents with autistic and diabetic children and I refer people to them when needed. They are all my links in this very strong chain and I depend on them more than they can ever know. And my thanks always go out to them for being there for me.

    Addendum: As I was wrapping up this article, my September support group meeting came and went. Only seventeen people attended. Many were worried about whether I would fold the group or not. What I learned from all this was that our meetings were really pretty good over the years, but people were managing on their own. It is okay if they choose not to come to the meetings, but they were possibly missing out on some very important changes. I also learned that many would like even more discussion time, so we will have to urge more people to speak up. They all felt there was a certain “core group” that kept coming to the meetings because we needed each other. We knew what the others were going through, we had new ideas, new recipes and some interesting happenings outside the group that we needed to share. And many times we just needed to “vent”. Yes, our feelings are hurt when we attend family events such as a potluck and not one person has tried to create something for us. Other times we rejoice because someone has gone above and beyond the call of duty to see that we have something to eat. In the end, what it all boiled down to was that we needed each other! So, even if our numbers are dwindling, we plan to keep on going. We will only meet from May through December with telephone and email support in between and we will continue to help those in need! So whether I am in Florida or Ohio, the support will ALWAYS BE THERE! We are the Richland County Celiac Support Group in Mansfield, Ohio...HEAR US ROAR!!

    Also, as we neared the deadline for this article, Scott at Celiac.com decided to send my survey to his email list. 79 people responded. As was expected, most of their answers matched those we already had. Below is a compilation of answers and comments made.

    CELIAC SUPPORT GROUP SURVEY:

    How many meetings have you attended?

    • 37% none
    • 20% 1-5
    • 13% 6-12
    • 18% 13 or more
    • 13% monthly

    If you no longer attend meetings, why?

    • 29% comfortable with diet
    • 35% find info online
    • 6% use website
    • 19% busy schedules
    • 4% don’t care for format
    • 6% needs new leader
    • 0% no longer follow the diet
    • 29% live too far away
    • 6% not interested
    • 33% other

    Responses:

    Some do not have support groups, some chapter closed, leader retired, inconvenient time/place, understand diet, groups very hopeless and clique-y and off-putting, and cost of gas. One respondent would like to start a group in East Hampton NY 11937.

    Rate the Meetings:

    Leadership:

    • Poor 3.8% / Fair 13.5% / Good 38.5% / Excellent 44.2%

    Presentation/Materials:

    • Poor 1.9% / Fair 15.4% / Good 42.3% / Excellent 40.4%

    Speakers:

    • Poor 9.8% / Fair 13.7% / Good 33.3% / Excellent 43.1%

    Discussion Time:

    Poor 2.0% / Fair 20% / Good 52% / Excellent 26%

    GF Samples:

    Poor 7.4% / Fair 18.5% / Good 31.5% / Excellent 42.6%

    Responses:

    • People are very vocal about wanting more GF restrictions and should learn to quietly educate people and try to make changes without making others feel forced to comply.
    • Some material offered nothing new or do better on their own, but like hearing stories and such from other people.
    • Some meetings are boring.
    • Difficult to get free speakers.
    • Redundant format, but good for newly diagnosed.
    • A group is essential to understanding both the diet and disease.
    • Food tasting is wonderful.

    Have you ever attended a meeting that turned your off and you never returned?

    • 13.8% yes
    • 87.7% no

    Responses:

    • One speaker promoted a very limited diet along with being GF. She went on and on, people left, & she still kept talking.
    • Prefer reading articles. Some groups get a bit quirky or boring.
    • No one my age, and because I am only “intolerant” I felt not as important as everyone else. Another big factor goes back to the time and place.
    • It was a peer support group and other long time members laughed at my symptoms saying they could not be gluten reactions, but others I know have the same symptoms.
    • About 5 years ago I attended a meeting where a book author mentioned that cancer from celiac is very rare and it was printed in her book. I raised my hand to mention that about 4 people in our group had cancer and I had previously completed intense chemo with a bone marrow transplant which was directly from lack of diagnosis with celiac. I wanted people to know that they should not mess with cheating on the diet because they might not know if they were injuring themselves. She assured everyone that cancer was rare. I guess when you are the one with cancer, you don’t want anyone else to go through it. So, my warning to others is not to cheat. 1 person is still too many with a disease that could have been diagnosed and wasn’t. I survived, but 2 more people in town did not.... with the same cancer.
    • Meetings are controlled by support group founders.
    • I don’t know - I just didn’t like their attitude. Negative and closed to newcomers.
    • Lots of people were gluten sensitive not celiac, & felt it was more social about eating out rather than any support or information.
    • I belong to 2 support groups. One I always attend. The other lacks leadership and, thus, I find it a waste of my time.
    • The first group meetings eventually dwindled to the same, very few, members and I had the diet info mastered then. Not much more was offered until a local group formed a year or so ago.
    • The Healthy Villi used to be an affiliate of CSA/USA. After going to several national CSA conferences, I found their leadership to be too restrictive and decided to no longer affiliate myself with them or attend their conferences. The Healthy Villi also severed their ties with CSA.

    Do you find the information you receive to be helpful in managing your diet and understanding celiac disease?

    • 87.7% yes
    • 12.3% no

    What meeting times would suit you best?

    • 43.3% monthly
    • 22.4% every other month
    • 22.4% quarterly
    • 13.4% none

    If your group folded, would you be lost without it?

    • 18.5% yes
    • 81.5% no

    Do you ever go to your group’s website to read the updated information and articles?

    • 41.3% yes
    • 31.7% occasionally
    • 27.0% never

    What is your feeling about support groups?

    • 56.8% there is a real need
    • 5.4% only need them to get started
    • 36.5% nice to have around when you need them
    • 1.4% people can do without them now
    • 0% telephone support is all that is needed.

    Which format do you think would be best for a meeting?

    • 70.1% educational with discussions
    • 38.8% social hour with discussions
    • 14.9% potluck dinners every month
    • 1.5% different member taking over each month
    • 4.5% dining out monthly instead of meetings
    • 26.9% cooking demos by members
    • 35.8% cooking demos by chefs

    Responses:

    • Some thought all of above and also vary the meetings.
    • Discussions and speakers very helpful.
    • Definitely education, but cooking demos would be interesting and open up discussions for new people, plus doctors should have packets to give to the newly diagnosed.
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    Wow what a story! I really appreciate you posting this as it's really, though unfortunate, nice to hear that others went through some of the same experiences that I did finding about about gluten and celiac. I only recently found out about my celiac disease and am so glad there is the internet to read about it and for recipes and support. This site by far has been the most help! 

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    Felt like I wrote this article.  Same thing our support group is dealing with.  Wish I had a clear answer as what to do.  Our support group was formed in 1979 and has always been active until 3 years ago.  As we have aged, the younger members don't seem to have time to step up and take on group meetings and activities.

    Bless all those with Celiac and hope they are taking their disease seriously.

    Theresa2407

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  • About Me

    Bev Messner is the leader of the Richland County, OH Celiac Disease Foundation support group.

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    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
     
     

    Scott Adams
    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

    Scott Adams
    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.

    Dr. Rodney Ford M.D.
    Beyond Celiac Disease
    Celiac.com 03/04/2014 - The question. What is the spectrum of gluten related disorders?
    “Experience is that marvelous thing that enables you to recognize a mistake when you make it again” – Franklin P Jones.
    The chilling news is that gluten-harm reaches far beyond the concept of celiac disease.  Gluten has now been recognized to cause a widespread spectrum of illness, over and above celiac disease. The two questions to answer in this context are:
    How many other diseases does gluten cause? How many people are adversely affected by gluten over their lifetime? Last century, gluten-illness was synonymous with celiac disease.  But, by the turn on the millennium, this concept radically changed.  It was discovered that gluten intolerance was not limited to celiac disease.
    Disturbingly, celiac disease is only just the beginning of the scourge of gluten.   Most people with any of these symptoms will not have celiac disease, but are likely to have an illness caused by gluten-harm.  A gluten-related disorder.
    A Typical Story
    Heidi, in her blog, writes about her life-long struggle to get a meaningful diagnosis for herself and for her family.  She says that testing for celiac disease and gluten sensitivity should be the first diagnosis to think about—not the last! http://www.adventuresofaglutenfreemom.com/2011/05/dermatitis-herpetiformis-and-other-atypical-symptoms-of-gluten-sensitivity/.
    Heidi says:
    “I also believe that the “atypical” symptoms are one of the major reasons why 95% of the estimated 3 million Americans living with celiac disease are undiagnosed.  Add to that, the fact that you can go into any medical specialist’s office in this country and no doubt find patients whose underlying health problem is gluten, whether in the form of celiac disease or non-celiac gluten sensitivity.  If doctors would stop being so eager to treat any of the 300+ signs, symptoms and conditions caused by gluten sensitivity (often with dangerous medications that will only perpetuate the problem), and take the time to practice medicine by seeking out the underlying root cause of the symptom, what a different world it could be!”
    The Gluten Syndrome
    The eating of gluten-grains is definitely associated with a lot of other serious illnesses. Collectively, I call this “The Gluten Syndrome”. This includes:
    Brain and nerve damage Auto immune disease Mental illness Skin disease Gastroenterological disorders A number of names are now in use for identifying gluten-related illnesses.  These include:
    Non-celiac gluten sensitivity (NCGS) Gluten intolerance Gluten sensitivity Gluten Syndrome Gluten-related disorders Gluten-related disorders diseases are being indentified by more and more research groups.  The realization of this widespread gluten-harm is so recent that adequate clinical studies have yet to be done.  Therefore, the true extent of the problem remains unknown, although meaningful estimates can be calculated.
    The Spectrum of Gluten-related Disorders
    With the publication of a landmark paper of “Spectrum of gluten-related disorders (http://www.biomedcentral.com/content/pdf/1741-7015-10-13.pdf), perhaps it is time for the Health Guidelines (or medical protocols) of celiac disease and gluten sensitivity to be revised.
    There have been many developments over the last few years: the diagnosis of gluten sensitivity has come of age.  The concept of gluten-related-disorders has gathered momentum with a number of converging influences: the boundary between celiac disease and gluten sensitivity has become blurred; the “gold-standard” small bowel biopsy for the tissue diagnosis of celiac disease is no longer regarded as mandatory; there has been recognition of a wide range of gluten-related disorders without intestinal damage; the extensive neurological effects of gluten have been well documented; and there has been a widespread adoption of gluten-free diets and lifestyle in the community.
    Here is the background of these statements:
    a) Spectrum of gluten-related disorders
    A group of 15 international celiac experts, who up until a few years ago were skeptical of gluten causing any illness other than celiac disease, have now defined a much wider group of illnesses which they have called “gluten-related disorders”.  This landmark paper “Spectrum of gluten-related disorders: consensus on new nomenclature and classification” places celiac disease in context of other gluten-illness.  Celiac disease no longer dominates the gluten sensitive picture (Sapone et al. BMC Medicine 2012, 10:13, published 7 February 2012). http://www.biomedcentral.com/content/pdf/1741-7015-10-13.pdf
    The abstract reads: “A decade ago celiac disease was considered extremely rare outside Europe and, therefore, was almost completely ignored by health care professionals. In only 10 years, key milestones have moved celiac disease from obscurity into the popular spotlight worldwide. Now we are observing another interesting phenomenon that is generating great confusion among health care professionals. The number of individuals embracing a gluten-free diet appears much higher than the projected number of celiac disease patients, fueling a global market of gluten-free products approaching the $2.5 billion in global sales in 2010. This trend is supported by the notion that along with celiac disease, other conditions related to the ingestion of gluten have emerged as health care concerns. This review will summarize our current knowledge about the three main forms of gluten reactions:
    allergic (wheat allergy) autoimmune (celiac disease, dermatitis herpetiformis, and gluten ataxia) possibly immune-mediated (gluten sensitivity)” Regarding gluten sensitivity, they say:
    “there are cases of gluten reactions in which neither allergic nor autoimmune mechanisms can be identified. These are generally defined as non-celiac GS or more simply, GS. Some individuals who experience distress when eating gluten-containing products and show improvement when following a GFD may have GS instead of celiac disease. GS is a condition distinct from celiac disease and is not accompanied by the concurrence of anti-tTG autoantibodies or other autoimmune comorbidities.”
    They go on to say:
    “the two conditions cannot be distinguished clinically, since the symptoms experienced by GS patients are often seen in celiac disease … their symptoms included:
    abdominal pain (68%) eczema and/or rash (40% headache (35%) ‘foggy mind’ (34%) fatigue (33%) diarrhea (33%) depression (22%) anemia (20%) numbness in the legs, arms or fingers 20% joint pain (11%).” They conclude:
    “All individuals, even those with a low degree of risk, are therefore susceptible to some form of gluten reaction during their life span. Therefore, it is not surprising that during the past 50 years we have witnessed an ‘epidemic’ of celiac disease and the surging of new gluten-related disorders, including the most recently described GS.”
    No definitive test yet for gluten sensitivity
    Unfortunately, there is no accurate or reliable test for gluten sensitivity.  However, the IgG-gliadin antibody (also know as AGA, anti-gliadin antibody) has been widely used as the best-available-marker, particularly in the identification of neurological and psychiatric gluten-disorders. Between 40-50% of gluten sensitivity patients may have IgG or IgA anti-gliadin antibodies (AGA Sapone A et al. (2010). Differential mucosal IL-17 expression in two gliadin-induced disorders: gluten sensitivity and the autoimmune enteropathy celiac disease. International Archives of Allergy & Immunology; 152: 75-80 http://www.ncbi.nlm.nih.gov/pubmed/19940509; Bizzaro N et al. (2010) Cutting edge issues in celiac disease and in gluten intolerance. Clinical Reviews in Allergy & immunology http://www.ncbi.nlm.nih.gov/pubmed/21181303.
    Therefore, if the IgG-gliadin antibody is not elevated, this cannot rule out a diagnosis of gluten sensitivity.  But, if elevated it can contribute to the diagnosis.
    Research laboratories are actively seeking specific test.  Until such a test is available, elimination and challenge with gluten remains the most effective option.
    c) gluten sensitivity a common illness
    Dr. Fasano estimates that 6% of the population has gluten sensitivity, compared to 1% with celiac disease.  http://celiacdisease.about.com/b/2011/03/11/u-of-md-study-identifies-differences-between-celiac-gluten-sensitivity.htm.
    Gluten sensitive now has its own Wikipedia page (http://en.wikipedia.org/wiki/Gluten_sensitivity#cite_ref-2) which also cites this figure.  The problem of estimating the incidence of gluten-related-disorders is that there is not yet a diagnostic test.  Current estimates are likely to be conservative.
    It is now known that no one can successfully digest gluten, and that we all have the potential to get unwell from gluten, and that it can cause illness in many different ways.  Celiac disease has increased five-fold over the last 40 years, (http://www.ncbi.nlm.nih.gov/pubmed/20868314) and it is likely that gluten sensitivity has increased at the same rate.   
    d) Change of diagnostic guidelines for celiac disease
    No longer is small bowel biopsy necessary for a diagnosis of celiac disease. In certain cases, serology is now sufficient for the diagnosis of celiac disease. This has been discussed for the last 10 years as blood tests have been developed to accurately detect gut damage (EMA, tTG and DGP).  Added to this is the genetics that can identify those people who can sustain intestinal damage with gluten (who carry the HLA DQ2/DQ8 alleles).  Finally, the endoscopy is expensive and unreliable for the diagnosis of celiac disease.  With the rapid increase in the incidence of celiac disease, it is impractical to demand tissue diagnosis for the millions of celiac disease sufferers.
    ESPGHAN (European Society for Pediatric Gastroenterology, Hepatology, and Nutrition) has new guidelines for the diagnosis of celiac disease http://www.phadia.com/Laboratories/Autoimmunity/Resources/PoM/2012/No-1-2012/
    They conclude: “The diagnosis of celiac disease depends on gluten-dependent symptoms, celiac disease-specific antibodies, the presence of HLA-DQ2 and/or HLA-DQ8, and characteristic histological changes in the duodenal biopsy. In case of high antibody levels the diagnosis of celiac disease may be based on a combination of symptoms, antibodies, and HLA, thus omitting the duodenal biopsy.”
    Their key message is: with high tissue damage markers (tTG IgA, EMA or DGP), in genetically susceptible people, celiac disease can be diagnosed without performing a duodenal biopsy.
    e) Gluten can harm brains and nerves
    Evidence shows that gluten does significantly affect the brain and nerves: gluten damage is not restricted to the gut.  This is elegantly documented by Marios Hadjivassiliou (Gluten sensitivity: from gut to brain. The Lancet Neurology, Volume 9, Issue 3, Pages 318 - 330, March 2010), http://www.thelancet.com/journals/laneur/article/PIIS1474-4422(09)70290-X/abstract
    They write:
    “Gluten sensitivity is a systemic autoimmune disease with diverse manifestations ... celiac disease, or gluten-sensitive enteropathy, is only one aspect of a range of possible manifestations of gluten sensitivity … gluten sensitivity was shown to manifest solely with neurological dysfunction.”
    They conclude:
    “To improve diagnosis rates, the perception of physicians that gluten sensitivity is solely a disease of the gut must be changed.”
    f) Double blind studies
    The term “gluten sensitivity” was first used by Prof W Dicke the discoverer of gluten-related-disorders in his 1950 MD Thesis.  He worked out that gluten was the culprit causing the illness (diarrhea, poor growth and irritability).  He made his diagnosis clinically by elimination and challenge (not double blind), and with no blood tests or biopsy. He said “in the clinic, one finds many sub-acute forms of enteritis and dyspepsia which respond poorly to normal therapy but well to wheat deprivation.”
    In the 1960s, with the instigation of the small bowel biopsy, the whole perspective of diagnosis became focused exclusively on the gut.  Celiac disease became a strictly gastrointestinal illness.  This focus became so intense that it led to the un-substantiated dogma that: gluten only caused celiac disease … and if the patient had a normal small bowel biopsy, then gluten could not be causing any harm.  This has now been shown to be a false doctrine.
    Currently, as in Dicke’s day, to establish if someone is gluten-sensitive, still relies a clinical trial of elimination and challenge.  However, not unreasonably, there is a call for double-blind studies to establish the place of gluten-related disorders outside the framework of celiac disease.
    For instance, in IBS patients, who stated that they were gluten-free from self-diagnosis (and who had celiac disease excluded), were randomized to either gluten or placebo treatment groups. The finding was that symptom-severity-scores (of pain, stool consistency and tiredness) were significantly higher for gluten-eaters compared to the placebo-gluten-free group (Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, Shepherd SJ, Muir JG, Gibson PR: Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial. Am J Gastroenterol 2011, 106:508-514.  http://www.ncbi.nlm.nih.gov/pubmed/21224837.
    g) 10% already going gluten-free
    Over the last few years there has been a widespread adoption of a gluten-free diet in the community.  Peter Gibson, professor of medicine at Monash University’s Eastern Health Clinical School, estimates that in Australia, up to 10 per cent of people who are avoiding gluten because they think gluten is their problem http://www.gesa.org.au/media.asp?cid=5&id=153.
    However, until there is a reliable way to make the diagnosis, it will remain difficult to quantify the problem. Gibson plans to investigate the prevalence of non-celiac gluten intolerance, why it occurs and whether low levels of gluten can be eaten safely. http://www.smh.com.au/lifestyle/diet-and-fitness/gluten-intolerance-possible-without-celiac-disease-study-finds-20110117-19u5b.html
    In America, the adoption of gluten-free diets is also increasingly common.  This can be measured by the sales of gluten-free products, which have a compound annual growth rate of 28% from 2004 to 2011.  For the year ending 2012, the sales of gluten-free products were up 19%. Also, nearly 20% of the population are actually buying.Gluten-free products, for whatever the reason.
    Conclusion
    Gluten was first implicated as causing disease 62 years ago by W Dicke.  Initially, it was considered a rare disease affecting only the gastrointestinal tract. But now gluten has been recognized to cause a wide spectrum of illnesses, with a number of different pathological and physiological mechanisms.  Celiac disease is becoming much more common, and gluten-related disorders are thought to affect at least 10% of the total community (and obviously it therefore affects a much higher proportion of the unwell-community).  
    Surely it is time for gluten-related-disorders to be part of the medical main-stream differential diagnosis.
    This is a chapter from Dr Rodney Ford’s new book “Gluten: ZERO Global” which is available as an ebook at http://www.glutenZEROglobal.com

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