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Re: FW: FDA Research Study

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Posted
Posted

I just took the time to take that test.  Which I had to start over because I did it wrong the first time.

 

It seems like it's more or less " testing " us on our own knowledge.  this seems odd.

 

On Wed, Apr 14, 2010 at 2:36 PM, Pam Newbury <pknewbury@...> wrote:

 

The FDA is currently behind schedule in developing guidelines for the industry for producing and labeling gluten-free foods (it was due in August 2008).  Looks like they are starting to move forward with this by asking celiacs to complete this survey.  Some of the questions are about diagnosis, how you feel about the diet, what reactions you have had, how long it takes for a reaction to occur, what foods cause a reaction, and how you react to certain kinds of labeling.  There is also some room for comments at the end. 

 

I would encourage everyone who can to complete this survey; even though I was a bit frustrated by it and would have preferred better questions, I’m glad that the FDA is at least asking us what we think.

 

Pam

 

 

 

Subject: FDA Research Study

 

 

Celiac Disease Foundation is assisting the FDA in seeking Participants for a Research Study on Gluten-Free Claims on Food Labels and is  requesting your assistance.

  The U.S. Food and Drug Administration (FDA) is seeking adults diagnosed with celiac disease or gluten-intolerance or caregivers to such individuals to participate in a research study on their grocery shopping habits. Participants will be asked to take an Internet survey, which will take approximately 10 minutes to complete.

The survey is available at www.synovate.net/forgluten

Please contact Kosa at kkosa@... or 1-800-334-8571, extension 23901, if you have any questions about the study. To request a paper copy of the survey, please call 1-877-4GLUTN1.

 

 

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Posted
Posted

I took it too and was annoyed a little…but if it helps us, so be

it.

From:

[mailto: ] On Behalf Of Tercovich

Sent: Wednesday, April 14, 2010 2:52 PM

Subject: Re: [ ] FW: FDA Research Study

I just took the time to take that test. Which I had to

start over because I did it wrong the first time.

It seems like it's more or less " testing " us on

our own knowledge. this seems odd.

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Guest guest

Posted
Posted

I tried the survey twice and both times it said I didn't qualify for the study.

I can't image why?

>

> The FDA is currently behind schedule in developing guidelines for the

> industry for producing and labeling gluten-free foods (it was due in August

> 2008). Looks like they are starting to move forward with this by asking

> celiacs to complete this survey. Some of the questions are about diagnosis,

> how you feel about the diet, what reactions you have had, how long it takes

> for a reaction to occur, what foods cause a reaction, and how you react to

> certain kinds of labeling. There is also some room for comments at the end.

>

>

>

>

> I would encourage everyone who can to complete this survey; even though I

> was a bit frustrated by it and would have preferred better questions, I'm

> glad that the FDA is at least asking us what we think.

>

>

>

> Pam

>

>

>

>

>

>

>

> Subject: FDA Research Study

>

>

>

>

>

>

>

>

> Image removed by sender. Celiac Disease Foundation

>

>

>

>

>

>

>

> Celiac Disease Foundation is assisting the FDA in seeking Participants for a

> Research Study on Gluten-Free Claims on Food Labels and is requesting your

> assistance.

>

>

> The U.S. Food and Drug Administration (FDA) is seeking adults diagnosed with

> celiac disease or gluten-intolerance or caregivers to such individuals to

> participate in a research study on their grocery shopping habits.

> Participants will be asked to take an Internet survey, which will take

> approximately 10 minutes to complete.

>

> The survey is available at www.synovate.net/forgluten

> <http://r20.rs6.net/tn.jsp?et=1103302252243 & s=3886 & e=001_6Qz1Slgidia96jGQwu6

> yxW4Z63DNXvVOSm3226wL1DtPu7h2MLIGlu-UAhElK8QS_cLCXFHL7ewx6TegugDTYp1JaujeYfL

> apFpagHfLzAMJ53C82pzXgPv62UmtvE9>

>

> Please contact Kosa at kkosa@... or 1-800-334-8571, extension

> 23901, if you have any questions about the study. To request a paper copy of

> the survey, please call 1-877-4GLUTN1.

>

>

>

>

>

>

>

>

>

> Forward email

> <http://ui.constantcontact.com/sa/fwtf.jsp?m=1101900168117 & ea=angelic3%40sur

> ewest.net & a=1103302252243>

>

>

>

> <http://visitor.constantcontact.com/d.jsp?v=001oO3WPVQi2L1QVcQpm2ok5jv9TQa84

> rPCBRPX8yW_4D_ahUm4gxc3gPeFINPAj8Dc-ysPu2Y33Aw%3D & p=un> Image removed by

> sender. Safe Unsubscribe

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> This email was sent to angelic3@... by celiacfoundation@...

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> <http://ui.constantcontact.com/roving/CCPrivacyPolicy.jsp> .

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>

> Celiac Disease Foundation | 13251 Ventura Blvd. | Suite 1 | Studio City | CA

> | 91604

>

> Image removed by sender.

>

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Posted
Posted

I would guess you have to choose certain options: you have

celiac, or you shop for someone who has celiac, and you do buy processed

products with some reasonable frequency. I’d guess that if you didn’t

pick those, you’d be out. Could that be it?

From:

[mailto: ] On

Behalf Of blick48

Sent: Thursday, April 15, 2010 11:24 AM

Subject: [ ] Re: FW: FDA Research Study

I tried the survey twice and both times it said

I didn't qualify for the study. I can't image why?

>

> The FDA is currently behind schedule in developing guidelines for the

> industry for producing and labeling gluten-free foods (it was due in

August

> 2008). Looks like they are starting to move forward with this by asking

> celiacs to complete this survey. Some of the questions are about

diagnosis,

> how you feel about the diet, what reactions you have had, how long it

takes

> for a reaction to occur, what foods cause a reaction, and how you react to

> certain kinds of labeling. There is also some room for comments at the

end.

>

>

>

>

> I would encourage everyone who can to complete this survey; even though I

> was a bit frustrated by it and would have preferred better questions, I'm

> glad that the FDA is at least asking us what we think.

>

>

>

> Pam

>

>

>

>

>

>

>

> Subject: FDA Research Study

>

>

>

>

>

>

>

>

> Image removed by sender. Celiac Disease Foundation

>

>

>

>

>

>

>

> Celiac Disease Foundation is assisting the FDA in seeking Participants for

a

> Research Study on Gluten-Free Claims on Food Labels and is requesting your

> assistance.

>

>

> The U.S. Food and Drug Administration (FDA) is seeking adults diagnosed

with

> celiac disease or gluten-intolerance or caregivers to such individuals to

> participate in a research study on their grocery shopping habits.

> Participants will be asked to take an Internet survey, which will take

> approximately 10 minutes to complete.

>

> The survey is available at www.synovate.net/forgluten

> <http://r20.rs6.net/tn.jsp?et=1103302252243 & s=3886 & e=001_6Qz1Slgidia96jGQwu6

> yxW4Z63DNXvVOSm3226wL1DtPu7h2MLIGlu-UAhElK8QS_cLCXFHL7ewx6TegugDTYp1JaujeYfL

> apFpagHfLzAMJ53C82pzXgPv62UmtvE9>

>

> Please contact Kosa at kkosa@... or 1-800-334-8571, extension

> 23901, if you have any questions about the study. To request a paper copy

of

> the survey, please call 1-877-4GLUTN1.

>

>

>

>

>

>

>

>

>

> Forward email

> <http://ui.constantcontact.com/sa/fwtf.jsp?m=1101900168117 & ea=angelic3%40sur

> ewest.net & a=1103302252243>

>

>

>

> <http://visitor.constantcontact.com/d.jsp?v=001oO3WPVQi2L1QVcQpm2ok5jv9TQa84

> rPCBRPX8yW_4D_ahUm4gxc3gPeFINPAj8Dc-ysPu2Y33Aw%3D & p=un> Image

removed by

> sender. Safe Unsubscribe

>

> This email was sent to angelic3@... by celiacfoundation@...

>

> Update Profile/Email Address

> <http://visitor.constantcontact.com/d.jsp?v=001oO3WPVQi2L1QVcQpm2ok5jv9TQa84

> rPCBRPX8yW_4D_ahUm4gxc3gPeFINPAj8Dc-ysPu2Y33Aw%3D & p=oo> | Instant

removal

> with SafeUnsubscribe

> <http://visitor.constantcontact.com/d.jsp?v=001oO3WPVQi2L1QVcQpm2ok5jv9TQa84

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Policy

> <http://ui.constantcontact.com/roving/CCPrivacyPolicy.jsp>

..

>

>

>

> Celiac Disease Foundation | 13251 Ventura Blvd. | Suite 1 | Studio City |

CA

> | 91604

>

> Image removed by sender.

>

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I tried to do the survey 2 more times, checking "Celiac" and "I follow a gluten-free diet". Yes, I checked to make sure that it said I do follow the g-f diet. Each time it told me I did not qualify. I had also checked that I buy a lot of processed food.

Then I tried again, this time checking "non-Celiac gluten sensitivity" and the same "I follow a gluten-free diet". I got in! Weird. Sounds like they don't want to hear from Celiacs...

From: Darcy <ddarcy@...> Sent: Thu, April 15, 2010 11:41:54 AMSubject: RE: [ ] Re: FW: FDA Research Study

I would guess you have to choose certain options: you have celiac, or you shop for someone who has celiac, and you do buy processed products with some reasonable frequency. I’d guess that if you didn’t pick those, you’d be out. Could that be it?

From: [mailto:celiacbayar eagroups (DOT) com] On Behalf Of blick48Sent: Thursday, April 15, 2010 11:24 AM Subject: [ ] Re: FW: FDA Research Study

I tried the survey twice and both times it said I didn't qualify for the study. I can't image why?>> The FDA is currently behind schedule in developing guidelines for the> industry for producing and labeling gluten-free foods (it was due in August> 2008). Looks like they are starting to move forward with this by asking> celiacs to complete this survey. Some of the questions are about diagnosis,> how you feel about the diet, what reactions you have had, how long it takes> for a reaction to occur, what foods cause a reaction, and how you react to> certain kinds of labeling. There is also some room for comments at the end.> > > > > I would encourage

everyone who can to complete this survey; even though I> was a bit frustrated by it and would have preferred better questions, I'm> glad that the FDA is at least asking us what we think.> > > > Pam> > > > > > > > Subject: FDA Research Study> > > > > > > > > Image removed by sender. Celiac Disease Foundation> > > > > > > > Celiac Disease Foundation is assisting the FDA in seeking Participants for a> Research Study on Gluten-Free Claims on Food Labels and is requesting your> assistance. > > > The U.S. Food and Drug Administration (FDA) is seeking adults diagnosed with> celiac disease or gluten-intolerance or caregivers to such individuals to> participate in a research study on their grocery

shopping habits.> Participants will be asked to take an Internet survey, which will take> approximately 10 minutes to complete.> > The survey is available at www.synovate. net/forgluten> <http://r20.rs6. net/tn.jsp? et=1103302252243 & s=3886 & e=001_6Qz1Slgidia96 jGQwu6> yxW4Z63DNXvVOSm3226 wL1DtPu7h2MLIGlu -UAhElK8QS_ cLCXFHL7ewx6Tegu gDTYp1JaujeYfL> apFpagHfLzAMJ53C82p zXgPv62UmtvE9> > > Please contact Kosa at kkosa@... or 1-800-334-8571, extension> 23901, if you have any questions about the study. To request a paper copy of> the survey, please call 1-877-4GLUTN1. > > > > > > > > > > Forward email> <http://ui.constantc ontact.com/ sa/fwtf.jsp? m=1101900168117 & ea=angelic3% 40sur> ewest.net & a=1103302252243> > > > > <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1 QVcQpm2ok5jv9TQa 84> rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=un> Image removed by> sender. Safe Unsubscribe> > This email was sent to angelic3@... by celiacfoundation@ ...> > Update Profile/Email Address> <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1 QVcQpm2ok5jv9TQa 84> rPCBRPX8yW_4D_

ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=oo> | Instant removal> with SafeUnsubscribe> <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1 QVcQpm2ok5jv9TQa 84> rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=un> T | Privacy Policy> <http://ui.constantc ontact.com/ roving/CCPrivacy Policy.jsp> .> > > > Celiac Disease Foundation | 13251 Ventura Blvd. | Suite 1 | Studio City | CA> | 91604> > Image removed by sender.>

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Posted
Posted

Bizarre. Sounds like a bug in the survey – a serious one.

I checked that I shop for someone who is celiac, and I buy

processed foods, and I got in.

From:

[mailto: ] On

Behalf Of

Sent: Thursday, April 15, 2010 12:03 PM

Subject: Re: [ ] Re: FW: FDA Research Study

I tried to do the survey 2

more times, checking " Celiac " and " I follow a gluten-free

diet " . Yes, I checked to make sure that it said I do follow the g-f

diet. Each time it told me I did not qualify. I had also

checked that I buy a lot of processed food.

Then I tried again, this time

checking " non-Celiac gluten sensitivity " and the same " I follow

a gluten-free diet " . I got in! Weird. Sounds like

they don't want to hear from Celiacs...

From: Darcy

<ddarcy@...>

Sent: Thu, April 15, 2010 11:41:54 AM

Subject: RE: [ ] Re: FW: FDA Research Study

I would guess you have to choose certain

options: you have celiac, or you shop for someone who has celiac, and you do

buy processed products with some reasonable frequency. I’d guess that if you

didn’t pick those, you’d be out. Could that be it?

From:

[mailto:celiacbayar eagroups (DOT) com] On

Behalf Of blick48

Sent: Thursday, April 15, 2010 11:24 AM

Subject: [ ] Re: FW: FDA Research Study

I tried the survey twice and both times it said I didn't qualify for the

study. I can't image why?

>

> The FDA is currently behind schedule in developing guidelines for the

> industry for producing and labeling gluten-free foods (it was due in

August

> 2008). Looks like they are starting to move forward with this by asking

> celiacs to complete this survey. Some of the questions are about

diagnosis,

> how you feel about the diet, what reactions you have had, how long it

takes

> for a reaction to occur, what foods cause a reaction, and how you react to

> certain kinds of labeling. There is also some room for comments at the

end.

>

>

>

>

> I would encourage everyone who can to complete this survey; even though I

> was a bit frustrated by it and would have preferred better questions, I'm

> glad that the FDA is at least asking us what we think.

>

>

>

> Pam

>

>

>

>

>

>

>

> Subject: FDA Research Study

>

>

>

>

>

>

>

>

> Image removed by sender. Celiac Disease Foundation

>

>

>

>

>

>

>

> Celiac Disease Foundation is assisting the FDA in seeking Participants for

a

> Research Study on Gluten-Free Claims on Food Labels and is requesting your

> assistance.

>

>

> The U.S. Food and Drug Administration (FDA) is seeking adults diagnosed

with

> celiac disease or gluten-intolerance or caregivers to such individuals to

> participate in a research study on their grocery shopping habits.

> Participants will be asked to take an Internet survey, which will take

> approximately 10 minutes to complete.

>

> The survey is available at www.synovate. net/forgluten

> <http://r20.rs6. net/tn.jsp?

et=1103302252243 & s=3886 & e=001_6Qz1Slgidia96 jGQwu6

> yxW4Z63DNXvVOSm3226 wL1DtPu7h2MLIGlu -UAhElK8QS_ cLCXFHL7ewx6Tegu

gDTYp1JaujeYfL

> apFpagHfLzAMJ53C82p zXgPv62UmtvE9>

>

> Please contact Kosa at kkosa@... or 1-800-334-8571, extension

> 23901, if you have any questions about the study. To request a paper copy

of

> the survey, please call 1-877-4GLUTN1.

>

>

>

>

>

>

>

>

>

> Forward email

> <http://ui.constantc ontact.com/ sa/fwtf.jsp?

m=1101900168117 & ea=angelic3% 40sur

> ewest.net & a=1103302252243>

>

>

>

> <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1

QVcQpm2ok5jv9TQa 84

> rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=un> Image

removed by

> sender. Safe Unsubscribe

>

> This email was sent to angelic3@... by celiacfoundation@ ...

>

> Update Profile/Email Address

> <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1

QVcQpm2ok5jv9TQa 84

> rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=oo> |

Instant removal

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Privacy Policy

> <http://ui.constantc ontact.com/ roving/CCPrivacy Policy.jsp>

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>

>

>

> Celiac Disease Foundation | 13251 Ventura Blvd. | Suite 1 | Studio City |

CA

> | 91604

>

> Image removed by sender.

>

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Posted
Posted

The survey struck me as messily constructed.

H.

-----Original Message-----

From: Darcy <ddarcy@...>

Sent: Thu, Apr 15, 2010 12:24 pm

Subject: RE: [ ] Re: FW: FDA Research Study

Bizarre. Sounds like a bug in the survey – a serious one.

I checked that I shop for someone who is celiac, and I buy

processed foods, and I got in.

From:

[mailto: ] On

Behalf Of

Sent: Thursday, April 15, 2010 12:03 PM

Subject: Re: [ ] Re: FW: FDA Research Study

I tried to do the survey 2

more times, checking "Celiac" and "I follow a gluten-free

diet". Yes, I checked to make sure that it said I do follow the g-f

diet. Each time it told me I did not qualify. I had also

checked that I buy a lot of processed food.

Then I tried again, this time

checking "non-Celiac gluten sensitivity" and the same "I follow

a gluten-free diet". I got in! Weird. Sounds like

they don't want to hear from Celiacs...

From: Darcy

<ddarcystanfordalumni (DOT) org>

Sent: Thu, April 15, 2010 11:41:54 AM

Subject: RE: [ ] Re: FW: FDA Research Study

I would guess you have to choose certain

options: you have celiac, or you shop for someone who has celiac, and you do

buy processed products with some reasonable frequency. I’d guess that if you

didn’t pick those, you’d be out. Could that be it?

From:

[mailto:celiacbayar eagroups (DOT) com] On

Behalf Of blick48

Sent: Thursday, April 15, 2010 11:24 AM

Subject: [ ] Re: FW: FDA Research Study

I tried the survey twice and both times it said I didn't qualify for the

study. I can't image why?

>

> The FDA is currently behind schedule in developing guidelines for the

> industry for producing and labeling gluten-free foods (it was due in

August

> 2008). Looks like they are starting to move forward with this by asking

> celiacs to complete this survey. Some of the questions are about

diagnosis,

> how you feel about the diet, what reactions you have had, how long it

takes

> for a reaction to occur, what foods cause a reaction, and how you react to

> certain kinds of labeling. There is also some room for comments at the

end.

>

>

>

>

> I would encourage everyone who can to complete this survey; even though I

> was a bit frustrated by it and would have preferred better questions, I'm

> glad that the FDA is at least asking us what we think.

>

>

>

> Pam

>

>

>

>

>

>

>

> Subject: FDA Research Study

>

>

>

>

>

>

>

>

> Image removed by sender. Celiac Disease Foundation

>

>

>

>

>

>

>

> Celiac Disease Foundation is assisting the FDA in seeking Participants for

a

> Research Study on Gluten-Free Claims on Food Labels and is requesting your

> assistance.

>

>

> The U.S. Food and Drug Administration (FDA) is seeking adults diagnosed

with

> celiac disease or gluten-intolerance or caregivers to such individuals to

> participate in a research study on their grocery shopping habits.

> Participants will be asked to take an Internet survey, which will take

> approximately 10 minutes to complete.

>

> The survey is available at www.synovate. net/forgluten

> <http://r20.rs6. net/tn.jsp?

et=1103302252243 & s=3886 & e=001_6Qz1Slgidia96 jGQwu6

> yxW4Z63DNXvVOSm3226 wL1DtPu7h2MLIGlu -UAhElK8QS_ cLCXFHL7ewx6Tegu

gDTYp1JaujeYfL

> apFpagHfLzAMJ53C82p zXgPv62UmtvE9>

>

> Please contact Kosa at kkosa@... or 1-800-334-8571, extension

> 23901, if you have any questions about the study. To request a paper copy

of

> the survey, please call 1-877-4GLUTN1.

>

>

>

>

>

>

>

>

>

> Forward email

> <http://ui.constantc ontact.com/ sa/fwtf.jsp?

m=1101900168117 & ea=angelic3% 40sur

> ewest.net & a=1103302252243>

>

>

>

> <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1

QVcQpm2ok5jv9TQa 84

> rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=un> Image

removed by

> sender. Safe Unsubscribe

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> This email was sent to angelic3@... by celiacfoundation@ ...

>

> Update Profile/Email Address

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QVcQpm2ok5jv9TQa 84

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Privacy Policy

> <http://ui.constantc ontact.com/ roving/CCPrivacy Policy.jsp>

..

>

>

>

> Celiac Disease Foundation | 13251 Ventura Blvd. | Suite 1 | Studio City |

CA

> | 91604

>

> Image removed by sender.

>

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Posted
Posted

No, I checked the "I have celiac disease" and "diagnosed by endoscopy" box and had no trouble completing the survey. It may be that if you are not diagnosed medically they don't consider you eligible? I dunno! Try try again!

-----Original Message-----

From: <kristin_boston@...>

Sent: Thu, Apr 15, 2010 12:02 pm

Subject: Re: [ ] Re: FW: FDA Research Study

I tried to do the survey 2 more times, checking "Celiac" and "I follow a gluten-free diet". Yes, I checked to make sure that it said I do follow the g-f diet. Each time it told me I did not qualify. I had also checked that I buy a lot of processed food.

Then I tried again, this time checking "non-Celiac gluten sensitivity" and the same "I follow a gluten-free diet". I got in! Weird. Sounds like they don't want to hear from Celiacs...

From: Darcy <ddarcystanfordalumni (DOT) org>

Sent: Thu, April 15, 2010 11:41:54 AM

Subject: RE: [ ] Re: FW: FDA Research Study

I would guess you have to choose certain options: you have celiac, or you shop for someone who has celiac, and you do buy processed products with some reasonable frequency. I’d guess that if you didn’t pick those, you’d be out. Could that be it?

From: [mailto:celiacbayar eagroups (DOT) com] On Behalf Of blick48

Sent: Thursday, April 15, 2010 11:24 AM

Subject: [ ] Re: FW: FDA Research Study

I tried the survey twice and both times it said I didn't qualify for the study. I can't image why?

>

> The FDA is currently behind schedule in developing guidelines for the

> industry for producing and labeling gluten-free foods (it was due in August

> 2008). Looks like they are starting to move forward with this by asking

> celiacs to complete this survey. Some of the questions are about diagnosis,

> how you feel about the diet, what reactions you have had, how long it takes

> for a reaction to occur, what foods cause a reaction, and how you react to

> certain kinds of labeling. There is also some room for comments at the end.

>

>

>

>

> I would encourage

everyone who can to complete this survey; even though I

> was a bit frustrated by it and would have preferred better questions, I'm

> glad that the FDA is at least asking us what we think.

>

>

>

> Pam

>

>

>

>

>

>

>

> Subject: FDA Research Study

>

>

>

>

>

>

>

>

> Image removed by sender. Celiac Disease Foundation

>

>

>

>

>

>

>

> Celiac Disease Foundation is assisting the FDA in seeking Participants for a

> Research Study on Gluten-Free Claims on Food Labels and is requesting your

> assistance.

>

>

> The U.S. Food and Drug Administration (FDA) is seeking adults diagnosed with

> celiac disease or gluten-intolerance or caregivers to such individuals to

> participate in a research study on their grocery

shopping habits.

> Participants will be asked to take an Internet survey, which will take

> approximately 10 minutes to complete.

>

> The survey is available at www.synovate. net/forgluten

> <http://r20.rs6. net/tn.jsp? et=1103302252243 & s=3886 & e=001_6Qz1Slgidia96 jGQwu6

> yxW4Z63DNXvVOSm3226 wL1DtPu7h2MLIGlu -UAhElK8QS_ cLCXFHL7ewx6Tegu gDTYp1JaujeYfL

> apFpagHfLzAMJ53C82p zXgPv62UmtvE9>

>

> Please contact Kosa at kkosa@... or 1-800-334-8571, extension

> 23901, if you have any questions about the study. To request a paper copy of

> the survey, please call 1-877-4GLUTN1.

>

>

>

>

>

>

>

>

>

> Forward email

> <http://ui.constantc ontact.com/ sa/fwtf.jsp? m=1101900168117 & ea=angelic3% 40sur

> ewest.net & a=1103302252243>

>

>

>

> <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1 QVcQpm2ok5jv9TQa 84

> rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=un> Image removed by

> sender. Safe Unsubscribe

>

> This email was sent to angelic3@... by celiacfoundation@ ...

>

> Update Profile/Email Address

> <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1 QVcQpm2ok5jv9TQa 84

> rPCBRPX8yW_4D_

ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=oo> | Instant removal

> with SafeUnsubscribe

> <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1 QVcQpm2ok5jv9TQa 84

> rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=un> T | Privacy Policy

> <http://ui.constantc ontact.com/ roving/CCPrivacy Policy.jsp> .

>

>

>

> Celiac Disease Foundation | 13251 Ventura Blvd. | Suite 1 | Studio City | CA

> | 91604

>

> Image removed by sender.

>

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Posted
Posted

> Sounds like they don't want to hear from Celiacs...

>

>

I checked off that I have medically diagnosed by biopsy and family history

celiac disease, and that I buy and use packaged products. I got in.

Lori

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Posted
Posted

Hi all,

I just want to offer one explanation for what may seem like the bizarreness of

this survey.... I'm a researcher, although I've never quite done a survey like

this (this would definately be considered a convenience sample) so I was trying

to think of reasons why it's bumping people from the survey. I also tried to

take the survey also and I said I was celiac, diagnosed by endoscopy and that I

follow a GF diet. It rejected me also, which I thought was strange at first. But

then I was thinking, maybe it is trying to randomly pull people into the survey?

So whether you get in the survey or not may just be from a random number

generator?? Anyways, that is the only explanation I could come up with.

I think it's great that they want to hear from us and I definately think we

should take advantage of this opportunity. I think they are asking knowledge

questions on the survey to test if we really have celiac or if we're just some

random person out there on the internet who knows nothing about celiac disease

and gluten... Therefore they would more heavily weigh answers from people that

seem like they know what they're talking about.. I dont know if any of my

explanantion are true, I'm just trying to offer something.

Alison

> >

> > The FDA is currently behind schedule in developing guidelines for the

> > industry for producing and labeling gluten-free foods (it was due in August

> > 2008). Looks like they are starting to move forward with this by asking

> > celiacs to complete this survey. Some of the questions are about diagnosis,

> > how you feel about the diet, what reactions you have had, how long it takes

> > for a reaction to occur, what foods cause a reaction, and how you react to

> > certain kinds of labeling. There is also some room for comments at the end.

> >

> >

> >

> >

> > I would encourage everyone who can to complete this survey; even though I

> > was a bit frustrated by it and would have preferred better questions, I'm

> > glad that the FDA is at least asking us what we think.

> >

> >

> >

> > Pam

> >

> >

> >

> >

> >

> >

> >

> > Subject: FDA Research Study

> >

> >

> >

> >

> >

> >

> >

> >

> > Image removed by sender. Celiac Disease Foundation

> >

> >

> >

> >

> >

> >

> >

> > Celiac Disease Foundation is assisting the FDA in seeking Participants for a

> > Research Study on Gluten-Free Claims on Food Labels and is requesting your

> > assistance.

> >

> >

> > The U.S. Food and Drug Administration (FDA) is seeking adults diagnosed with

> > celiac disease or gluten-intolerance or caregivers to such individuals to

> > participate in a research study on their grocery shopping habits.

> > Participants will be asked to take an Internet survey, which will take

> > approximately 10 minutes to complete.

> >

> > The survey is available at www.synovate. net/forgluten

> > <http://r20.rs6. net/tn.jsp? et=1103302252243 & s=3886 & e=001_6Qz1Slgidia96

jGQwu6

> > yxW4Z63DNXvVOSm3226 wL1DtPu7h2MLIGlu -UAhElK8QS_ cLCXFHL7ewx6Tegu

gDTYp1JaujeYfL

> > apFpagHfLzAMJ53C82p zXgPv62UmtvE9>

> >

> > Please contact Kosa at kkosa@ or 1-800-334-8571, extension

> > 23901, if you have any questions about the study. To request a paper copy of

> > the survey, please call 1-877-4GLUTN1.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Forward email

> > <http://ui.constantc ontact.com/ sa/fwtf.jsp? m=1101900168117 & ea=angelic3%

40sur

> > ewest.net & a=1103302252243>

> >

> >

> >

> > <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1

QVcQpm2ok5jv9TQa 84

> > rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=un> Image removed by

> > sender. Safe Unsubscribe

> >

> > This email was sent to angelic3@ by celiacfoundation@ ...

> >

> > Update Profile/Email Address

> > <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1

QVcQpm2ok5jv9TQa 84

> > rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=oo> | Instant removal

> > with SafeUnsubscribe

> > <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1

QVcQpm2ok5jv9TQa 84

> > rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=un> T | Privacy

Policy

> > <http://ui.constantc ontact.com/ roving/CCPrivacy Policy.jsp> .

> >

> >

> >

> > Celiac Disease Foundation | 13251 Ventura Blvd. | Suite 1 | Studio City | CA

> > | 91604

> >

> > Image removed by sender.

> >

>

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Posted
Posted

Alison, thanks for taking the time to give us your ideas on this. Quite interesting!

H.

-----Original Message-----

From: alisonjhughes25 <alison.j.hughes@...>

Sent: Fri, Apr 16, 2010 9:03 am

Subject: [ ] Re: FW: FDA Research Study

Hi all,

I just want to offer one explanation for what may seem like the bizarreness of this survey.... I'm a researcher, although I've never quite done a survey like this (this would definately be considered a convenience sample) so I was trying to think of reasons why it's bumping people from the survey. I also tried to take the survey also and I said I was celiac, diagnosed by endoscopy and that I follow a GF diet. It rejected me also, which I thought was strange at first. But then I was thinking, maybe it is trying to randomly pull people into the survey? So whether you get in the survey or not may just be from a random number generator?? Anyways, that is the only explanation I could come up with.

I think it's great that they want to hear from us and I definately think we should take advantage of this opportunity. I think they are asking knowledge questions on the survey to test if we really have celiac or if we're just some random person out there on the internet who knows nothing about celiac disease and gluten... Therefore they would more heavily weigh answers from people that seem like they know what they're talking about.. I dont know if any of my explanantion are true, I'm just trying to offer something.

Alison

> >

> > The FDA is currently behind schedule in developing guidelines for the

> > industry for producing and labeling gluten-free foods (it was due in August

> > 2008). Looks like they are starting to move forward with this by asking

> > celiacs to complete this survey. Some of the questions are about diagnosis,

> > how you feel about the diet, what reactions you have had, how long it takes

> > for a reaction to occur, what foods cause a reaction, and how you react to

> > certain kinds of labeling. There is also some room for comments at the end.

> >

> >

> >

> >

> > I would encourage everyone who can to complete this survey; even though I

> > was a bit frustrated by it and would have preferred better questions, I'm

> > glad that the FDA is at least asking us what we think.

> >

> >

> >

> > Pam

> >

> >

> >

> >

> >

> >

> >

> > Subject: FDA Research Study

> >

> >

> >

> >

> >

> >

> >

> >

> > Image removed by sender. Celiac Disease Foundation

> >

> >

> >

> >

> >

> >

> >

> > Celiac Disease Foundation is assisting the FDA in seeking Participants for a

> > Research Study on Gluten-Free Claims on Food Labels and is requesting your

> > assistance.

> >

> >

> > The U.S. Food and Drug Administration (FDA) is seeking adults diagnosed with

> > celiac disease or gluten-intolerance or caregivers to such individuals to

> > participate in a research study on their grocery shopping habits.

> > Participants will be asked to take an Internet survey, which will take

> > approximately 10 minutes to complete.

> >

> > The survey is available at www.synovate. net/forgluten

> > <http://r20.rs6. net/tn.jsp? et=1103302252243 & s=3886 & e=001_6Qz1Slgidia96 jGQwu6

> > yxW4Z63DNXvVOSm3226 wL1DtPu7h2MLIGlu -UAhElK8QS_ cLCXFHL7ewx6Tegu gDTYp1JaujeYfL

> > apFpagHfLzAMJ53C82p zXgPv62UmtvE9>

> >

> > Please contact Kosa at kkosa@ or 1-800-334-8571, extension

> > 23901, if you have any questions about the study. To request a paper copy of

> > the survey, please call 1-877-4GLUTN1.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > Forward email

> > <http://ui.constantc ontact.com/ sa/fwtf.jsp? m=1101900168117 & ea=angelic3% 40sur

> > ewest.net & a=1103302252243>

> >

> >

> >

> > <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1 QVcQpm2ok5jv9TQa 84

> > rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=un> Image removed by

> > sender. Safe Unsubscribe

> >

> > This email was sent to angelic3@ by celiacfoundation@ ...

> >

> > Update Profile/Email Address

> > <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1 QVcQpm2ok5jv9TQa 84

> > rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=oo> | Instant removal

> > with SafeUnsubscribe

> > <http://visitor. constantcontact. com/d.jsp? v=001oO3WPVQi2L1 QVcQpm2ok5jv9TQa 84

> > rPCBRPX8yW_4D_ ahUm4gxc3gPeFINP Aj8Dc-ysPu2Y33Aw %3D & p=un> T | Privacy Policy

> > <http://ui.constantc ontact.com/ roving/CCPrivacy Policy.jsp> .

> >

> >

> >

> > Celiac Disease Foundation | 13251 Ventura Blvd. | Suite 1 | Studio City | CA

> > | 91604

> >

> > Image removed by sender.

> >

>

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