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What Happens At A Support Group?

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Hi, I live in NYC.

My younger son (6) was just dx'd by Enterolabs on April 1. He also had some prominent symptoms which subsided after going gluten-free.

Husband is confirmed celiac, gluten-free, had ++ endoscopy in 1999.

My older son just came back with a low positive score from Enterolabs (+ for gene and IgA of 14) - he is asymptomatic.

I am quite muddled and overwhelmed by the whole issue. If you were to search my previous posts you would see the words of a desperate person. I have reached out to a few celiac parents in my area and the comments I've heard have ranged forom sneers to "Better her than me"(about their celiac kid) and suggesting I am whining by being interested in a support group. One celiac mom told me she 'wasn't into sitting around and commisserating".

I am an athlete and I have competed on several teams -- I am used to the concept of teamwork conquering all --- and being able to tackle some really REALLy tough stuff with the help of others. I also used to go to a breastfeeding support group and that really helped me when I was having challenges with nursing. I am really surprised and taken aback by the dismissive attitude I'm hearing about support groups. I would think with a lifestyle thing like celiac, a support group would be a lovely tool for coping. For those of you in support groups, what happens in the group? Do you bring your kids?

Does anyone have any suggestion for me, in the NYC area? Sofar the couple of peers I've been referred to personally have not been too encouraging.

PS -- it really doesn't help that we have a vegetarian household. I think if we ate meats the adjustment would be much easier. I can really use some help -- I'm happy to pay for it, therapy, counseling, nurtitionist, shrink, personal chef....just don't know which way to turn. Thanks for reading. HEIDI

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Hi Heidi, I know that changing life styles are tough. I have only gone to a very small support group once. And basically what we did at this one since the group hadn't meet in about 4-5 months is just got input on what people wanted out of the group. So we can get a better support group going in the future. We also talked about products that we had recently found in different stores in the area, not specailty stores. Shared some receipies. Sorry I am not much help. But it did help me to go and see that there other people out there and they were very willing to try to help with any questions.

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First off there's food! Gluten-free bread, muffins, cookies, that members bake and bring. Then there are usually gluten-free products that are samples I guess. Ours has 2 book people that keep a supply of assorted gluten-free books for sale at reduced prices.

There's usually about 20-25 people at ours and we meet in a hospital conference room (there are well over 100 members total). Sometimes there are guest speakers, such as cookbook authors, Dr's etc. We usually introduce new members and they tell a little about themselves as it relates to celiac or other issues. It's really amazing how many different scenarios there can be with this disease.

We share new information. The new members get large packets of info that has been compiled for newbes. There's always some club business to address or upcoming event to discuss.

I've found it to be very worthwile. BtW, they offer to have an experienced mentor volunteer for anyone that asks.

best regards, lm


gluten-free 12-18-06

colonoscopy, upper GI
blood, urine, stool tests, prometheus panel
positive endoscopy/positive duodenal biopsies (severe villous atrophy, high intraepithelial lympocytes)
diagnosed celiac disease by Gastroenterologist Andrew R. Gottesman, 12-18-06

"Sobriety sucks. That's why they invented booze in the first place." Denis Leary - Rescue Me

Beware the chocolate of Chiapa

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Hi,

I'm sorry you've run into so many with bad attitudes. I go to a support group that meets once month. Kids usually don't come, except for teens. I think there may be a special group for kids in the area though. They usually go over a few business matter at first and then have a presentation or theme for the night. It is not always exciting or interesting but it IS always informative and I'm always glad that I went. We have a break at some point and get to sample the goodies that everyone's brought. I also like going for the sampling and to get out of the house! It motivates me to try new recipies too. We had a librarian come in and talk about the internet and other resources, we watched a DVD of Dr, Fine from Enterolabs speak, recipie adjusting tips, casseroles, holiday recipies, etc. If someone goes on a cruise or to a conference or other relevant event they share about it. We don't get much time to socialize but everyone is supportive and I know that I could call and ask someone for help if I really needed it, even though I don't know anyone really. They are good about giving hard solid facts so that as a newbie I could compare it against things that I heard elsewhere.


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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Hi Heidi

I know how hard is at the beginning, especially when you want to bring the gluten-free diet to everyone in the house. the whole thing is overwhelming.

I cannot give you much advice on the support gropu thing, But I will tell you, the support that I have found in this website is tremendous. Everyone is eager and ready to help the best way they can.

Best regards to you.


Have not I commanded you? Be strong and of a good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with you every where you go.

Jos 1:9

I can do all things thru Christ which strengtheneth me.

Phi 4:13

Blood Test: Negative 03/2006

Biopsy Negative 04/2006

Stopped gluten-free diet 04/2006

EnteroLabs: Positive 04/2007

Fecal Antigliadin IgA "Positive"

Fecal Antitissue Transglutaminase IgA "Positive"

Quantitative Microscopic Fecal Fat Score "Positive"

Fecal anti-casein (cow

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Hi heidi,

One of the best support groups I have is right here. The nice thing about this board is you can get help 24:7.

The support group I attend is nice, I go with a friend who also has celiac that works at my dentist's office. We just get together and there are speakers about advancements in celiac, help topics for new comers to the disease, etc.

There are gluten free goodies too!!!

Hope this helps.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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I'm all for the "we're all in this together". I love the collaboration that takes place on this site. I think we're all still really pioneers, helping each other figure out how to make hot dig buns etc. (still can't get those things out of my head!)


Me: GLUTEN-FREE 7/06, multiple food allergies, T2 DIABETES DX 8/08, LADA-Latent Autoimmune Diabetes in Adults, Who knew food allergies could trigger an autoimmune attack on the pancreas?! 1/11 Re-DX T1 DM, pos. DQ2 Celiac gene test 9/11

Son: ADHD '06,

neg. CELIAC PANEL 5/07

ALLERGY: "positive" blood and skin tests to wheat, which triggers his eczema '08

ENTEROLAB testing: elevated Fecal Anti-tissue Transglutaminase IgA Dec. '08

Gluten-free-Feb. '09

other food allergies

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Hey,

If you want your kid(s) with celiac to go to a support group, you can look up a "ROCK" (Raising Our Celiac Kids) in your area. I have heard they go on gluten-free picnics, etc. Also, this site is really helpful!! :) Good luck!

P.S. Ignore people who say rude things. Going 100% gluten-free is really a big commitment and some people aren't as understanding.


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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HEIDI:

I LEAD a celiac support group in Seattle. So I can tell you that what happens at group meetings depends on the leader and the members. I suggest you call local leaders of groups in your area. I checked the website for GIG (Gluten Intolerance Group) of which my group is a 'partner' member but only found the Suffolk County group on Long Island, which may not be convenient for you. However that's a VERY active group which recently did a fantastic gluten free food fair with speakers. You could call the leader to inquire about their meetings. Here's contact info for the GIG Suffolk County group:

Suffolk County Celiacs

Les Doti, Branch Manager

phone: 631-724-6651

email: ldoti@verizon.net

website: www.suffolkcountyceliacs.com

The Celiac Sprue Association lists 2 contacts for their Greater New York City Chapter (support groups):

Mary Ferry, New York

212-304-1026

Merle Cachia, New York

212-662-2464, pjc1@columbia.edu

Different groups will offer different kinds of support, information, speakers and events. The only way to learn what is available in YOUR area is to ASK. Don't depend on hearsay from people who attend meetings only occasionally or not at all. Usually leaders are too busy leading their groups to post on this website. I also organize our annual celiac disease awareness walk and gluten free food fair. So I don't post as often as I did before I became a group leader and annual event organizer.

Good Luck!

BURDEE


Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.

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Hi Heidi,

I was just diagnosed myself about three months ago. It has been overwhelming, despite that fact that I have studied nutrition and cooking (on my own) for about ten years now. I guess I've always been trying to figure out what the heck was wrong with me and I knew food was related somehow.

I am in NYC and would love to talk. I've been looking for support groups and agree with your team concept. We're humans--cooperation is how we get things done. Maybe we could help each other find resources. I am vegan and my doctor doesn't think it's a great idea, but I am comitted to it. I'm just trying to learn how to make it work.

Good luck and please feel free to contact me if you'd like to meet up.

Warm regards,

Julie

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Hi Heidi,

I was just diagnosed myself about three months ago. It has been overwhelming, despite that fact that I have studied nutrition and cooking (on my own) for about ten years now. I guess I've always been trying to figure out what the heck was wrong with me and I knew food was related somehow.

I am in NYC and would love to talk. I've been looking for support groups and agree with your team concept. We're humans--cooperation is how we get things done. Maybe we could help each other find resources. I am vegan and my doctor doesn't think it's a great idea, but I am comitted to it. I'm just trying to learn how to make it work.

Good luck and please feel free to contact me if you'd like to meet up.

Warm regards,

Julie

New York City Celiac Disease Meetup Group

http://celiacdisease.meetup.com/1/


Celiac diagnosis from positive blood work & endoscope (2005)

Serologic equivalent: HLA-DQ 2,3 Subtype 2,8 (double Celiac genes)

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New York City Celiac Disease Meetup Group

http://celiacdisease.meetup.com/1/

The last posting is a group that meets in nyc at different resturants. Today the Nyc group had a meetup in Queens a walk. I live in suffolk and go to the suffolk groups and the Nassau groups. I also go the NYc group I have made three of there events. I find these groups and this board helpful. http://celiacdisease.meetup.com/1/ I see wescheste group has a walk coming up soon.

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