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Survey By Nat'L Foundation For Celiac Awareness

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Posted 09 February 2010 - 04:36 AM


Info on survey states:
"The National Foundation for Celiac Awareness (NFCA) has a dual approach in our work with celiac disease: To gain a diagnosis for those who suffer with celiac disease and gluten sensitivity, and to improve the quality of life for those who have been diagnosed.

This survey is geared to help NFCA and our partners meet both aspects of this mission. We want to…

• Learn more about the diagnostic process as actually experienced by you, the people who have determined that you have celiac disease. This includes those of you who have been self-diagnosed.

• Identify the health problems and complications that persist for individuals after their diagnosis and adoption of a gluten-free diet.

• Determine other, possibly related, healthcare issues for those who have been diagnosed with celiac or gluten sensitivity.

Through this survey, we hope to better address your needs, as well as those of the millions suffering with celiac and gluten sensitivity. Specifically, we plan to include this information in NFCA’s programs for medical professionals.

For this survey, NFCA is working with Drs. Vikki and Richard Petersen of the HealthNOW Medical Center, experts in gluten sensitivity. "
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Posted 11 February 2010 - 11:52 AM

Thanks for posting the survey. I wish they had included more options under how you were diagnosed. They only list blood, biopsy and selfdiagnosed. I don't fit any of those since I was diagnosed by my allergist and confirmed by my GI when the gluten challenge resulted in an extremely severe reaction. It is nice they are trying to get some input from us but a box to write in comments at the end would have been helpful.
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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)

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