<<Disclaimer: Verify this information before applying it to your situation.>>
Elaine Monarch asked me to post the following for CDF. Prior responses have
already made this by far the largest survey of Celiacs ever conducted in
America. I hope that those of you who live in America will assist CDF by
becoming an additional respondee. If your email reader has a problem
formatting this, please call CDF at (818) 990-2354 and they can mail or fax it
to you.
Please DO NOT reply by email. If you have any questions, please do not post
anything to the whole list, send it to me privately at <[log in to unmask]>.
Thanks,
Bill Elkus, one of your listowners
A survey of individuals with Celiac Disease/Dermatitis Herpetiformis was
started in 1994 by the Celiac Disease Foundation (CDF) to establish a database
of the celiac population in the United States, and to study problems in the
diagnosis and management of celiac disease. In conjuction with the University
of Southern California Kenneth Norris Jr. Cancer Hospital / Celiac Disease
Center gastroenterologists, the published data from this survey will elevate
the level of awareness of these under-diagnosed and mis-diagnosed diseases in
the United States, and will lead to more expedient recognition, diagnosis, and
care of the celiac patient in the medical community.
We are requesting your assistance with this ongoing project. If you are biopsy
confirmed with celiac disease and/or dermatitis herpetiformis, please complete
this questionnaire, print it out, and mail the completed questionnaire to:
Celiac Disease Foundation, 13251 Ventura Boulevard, Suite 3, Studio City,
California 91604-1838. To ensure total confidentiality, email responses
cannot be accepted. All responses will remain confidential and are for the
exclusive use of the Celiac Disease Foundation.
Thank you.
Elaine Monarch, Jill Morey Gaines,
Executive Director President
INFORMATION QUESTIONNAIRE
In order to develop more accurate data on the Celiac population in the United
States, the Celiac Disease Foundation would like your help by completing this
questionnaire.
NAME____________________________________________________________________________
_________
ADDRESS_________________________________________________________________________
_____________
CITY_____________________________________STATE_____________
ZIP CODE_______________________
HOME PHONE________________________________
WORK PHONE______________________________
SEX: ( ) MALE , ( ) FEMALE BIRTH DATE__________________
AGE YOU WERE CORRECTLY DIAGNOSED_____;
Weight AT DIAGNOSIS_____; Height AT DIAGNOSIS_____
ETHNIC
BACKGROUND/HERITAGE_________________________________________________________
WHEN YOU FIRST EXHIBITED SYMPTOMS, WHAT WAS THE
DIAGNOSIS?_____________________________
HOW MANY DOCTORS DID YOU SEE, BEFORE YOU WERE CORRECTLY
DIAGNOSED?__________________
HOW LONG DID IT TAKE TO GET DIAGNOSED?_______ NAME AND ADDRESS OF DIAGNOSING
PHYSICIAN
________________________________________________________________________________
___________
PLEASE INDICATE DOCTOR'S SPECIALTY:
( ) INTERNIST
( ) PEDIATRIC GI
( ) GASTROENTEROLOGIST
( ) DERMATOLOGIST
( ) PEDIATRICIAN
( ) OTHER__________________________________
WAS DIAGNOSIS OF CD CONFIRMED BY SMALL BOWEL BIOPSY?
( ) YES ( ) NO
WAS DIAGNOSIS OF DH CONFIRMED BY SKIN BIOPSY?
( ) YES ( ) NO
WHAT ARE YOUR DIAGNOSED DISORDERS?
( ) CELIAC DISEASE
( ) DERMATITIS HERPETAFORMIS
( ) THYROID DISORDERS
( ) LUPUS(SLE)
( ) DIABETES MELLITUS
( ) OTHER__________________
DO YOU ADHERE TO A GLUTEN FREE DIET? (MARK ONE ONLY)
( ) YES,
( ) JUST BREADS/PASTRIES,
( ) CHEAT SOME,
( ) NO
DIETARY RESTRICTIONS:
( ) GLUTEN-FREE
( ) LACTOSE-FREE
( ) SOY-FREE
( ) CORN- FREE
( ) EGG-FREE
( ) OTHER__________________________
DO YOU HAVE RELATIVES WITH CELIAC DISEASE (CD OR DH)?
( ) YES, ( ) NO
IF SO, LIST NAMES AND
RELATIONSHIPS.________________________________________________________
________________________________________________________________________________
____________
WHERE DID YOU HEAR ABOUT THE CELIAC DISEASE FOUNDATION?
( ) FAMILY DOCTOR ( ) SPECIALIST
( ) DIETICIAN ( ) BROCHURE
( ) RELATIVE OR FRIEND ( ) NEWSPAPER
( ) OTHER_________________________________
PLEASE RETURN COMPLETED FORMS TO,OR FOR MORE FORMS, CONTACT
CELIAC DISEASE FOUNDATION
13251 VENTURA BLVD., SUITE #3:
STUDIO CITY, CA 91604-1838
(818) 990-2354
DATE:_____________________
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