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I anyone here a member of a support group in Auburn or Syracuse?
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Syracuse/auburn Area Question.
Support groups.
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#1
Imanistj 
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Posted 20 November 2009 - 07:48 AM
Nancy
I really am an ISTJ (Myers-Briggs Personality Type).
Responsible pet owners spay and neuter.
Please Google prosopagnosia, a neurological deficit also called facial amnesia or faceblind. Yup, I have it.
Poor me--gluten free.
I'll have a grilled cheese sandwich--hold the bread.
I really am an ISTJ (Myers-Briggs Personality Type).
Responsible pet owners spay and neuter.
Please Google prosopagnosia, a neurological deficit also called facial amnesia or faceblind. Yup, I have it.
Poor me--gluten free.
I'll have a grilled cheese sandwich--hold the bread.
#2
ravenwoodglass
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- Group: Advanced Members
- Posts: 12,491
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Posted 20 November 2009 - 08:12 AM
Imanistj, on Nov 20 2009, 07:48 AM, said:
I anyone here a member of a support group in Auburn or Syracuse?
If you find one in Auburn please let me know as I am close to there. I do know there is a support group in Rochester but I don't know about Syracuse. You could try calling their hospital and asking, it seems like they would know if there is one.
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
"I will try again tommorrow" (Mary Anne Radmacher)
celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007
Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15
Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom
Positive to Soy and Casien also Aug 2007
Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303
HLA-DQB1 Molecular analysis, Allele 2 0303
Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)
#3
Imanistj
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- Group: Advanced Members
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- Joined: 19-October 09
Posted 20 November 2009 - 09:35 AM
I read recently that the Auburn group for celiac children is adding an adult group. I'll try to find the info.
Nancy
I really am an ISTJ (Myers-Briggs Personality Type).
Responsible pet owners spay and neuter.
Please Google prosopagnosia, a neurological deficit also called facial amnesia or faceblind. Yup, I have it.
Poor me--gluten free.
I'll have a grilled cheese sandwich--hold the bread.
I really am an ISTJ (Myers-Briggs Personality Type).
Responsible pet owners spay and neuter.
Please Google prosopagnosia, a neurological deficit also called facial amnesia or faceblind. Yup, I have it.
Poor me--gluten free.
I'll have a grilled cheese sandwich--hold the bread.
#4
jerseyangel
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- Joined: 29-September 05
Posted 20 November 2009 - 09:40 AM
Did you try here:
http://www.celiac.com/articles/227/2/A-Lis...ters/Page2.html
I found this on the list, maybe she could point you in the right direction:
Syracuse - Support Group
Contact: Ruth Wyman
Central New York Celiac Support Group
263 Roxbury Road
Syracuse, NY 13206
Tel: (315) 463-4616
E-mail: jwyman1@twcny.rr.com.
http://www.celiac.com/articles/227/2/A-Lis...ters/Page2.html
I found this on the list, maybe she could point you in the right direction:
Syracuse - Support Group
Contact: Ruth Wyman
Central New York Celiac Support Group
263 Roxbury Road
Syracuse, NY 13206
Tel: (315) 463-4616
E-mail: jwyman1@twcny.rr.com.
Patti
"Life is what happens while you're busy making other plans"
"When people show you who they are, believe them"--Maya Angelou
"Bloom where you are planted"--Bev
Celiac.com - Celiac Disease Board Moderator
"Life is what happens while you're busy making other plans"
"When people show you who they are, believe them"--Maya Angelou
"Bloom where you are planted"--Bev
Celiac.com - Celiac Disease Board Moderator
#5
Julie531
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Posted 12 March 2010 - 08:17 PM
I am the organizer for The Fingerlakes Celiac Group. You can sign up to be a part on meetup.com. We meet in Ithaca, NY. In Syracuse Ruth Wyman is the group leader. In Auburn it is Nikki Hai(315-252-2764). She runs both the R.O.C.K group and the Celiac group for adults in Auburn. Hope this helps!
#6
my.oh.my
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Posted 15 March 2010 - 08:06 AM
Imanistj, on 20 November 2009 - 07:48 AM, said:
I anyone here a member of a support group in Auburn or Syracuse?
hi there,
ive got relatives in Syracause. they have been tellung me of Central New York Celiac Support Group where Ruth Wyman is president. they also buy there gluten-free at Natures Tyme 5898 Bridge st in East Syracuse NY 13057
hope my info is helpful to you!
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