FDA Research Study (really just a survey)

[Guest guest]

Pam,

What a strange "survey"! I answered the first few questions, until the diagnosis question and the "do you follow a gluten-free diet" question. As soon as I checked the box that said that I followed a gluten-free diet, it told me I did not qualify for the survey! What kind of survey about gluten labeling disqualifies people who are on a gluten free diet? The Celiac Disease Foundation is supporting this?

Best,

From: Pam Newbury <pknewbury@...> Sent: Wed, April 14, 2010 11:57:18 PMSubject: [ ] FDA Research Study (really just a survey)

Below is the information from the FDA and the link to the survey (this is a reposting from my previous post today). My understanding is that their survey is what they refer to as a “research studyâ€. If you click on the link below it will take you to the survey. Participation just means completing the survey. Pam

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/forglutenPlease 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.

From: [mailto:celiacbayar eagroups (DOT) com] On Behalf Of Ahroon YochSent: Wednesday, April 14, 2010 4:36 PM Subject: Re: [ ] FDA Research Study

How can we get to be a part of the study?Sent from my iPhone

On Apr 14, 2010, at 3:15 PM, "Pam Newbury" <pknewbury@earthlink .net> wrote:

They want to know what consumers think about different ways of labeling foods gluten-free. I think they want to know what is confusing and what people will trust when it comes to how the gluten-free claim is presented on a label. I don’t like how they went about it, but I’m trying to be glad they are at least asking us what we think. I wrote a lot in the comments section at the end….

Pam

_

[Guest guest]

I think you must have only thought you checked the "I follow a gluten free diet" box, because that's what I did and I did the whole survey - they are obviously only interested in people who are either following it for themselves or preparing food for someone who is. I am guessing you checked the "I don't follow a gf diet" by mistake.

I am surprised by the negative response to this survey. I am thrilled that they are asking me these questions, which are clearly designed to ascertain what kind of labeling laws they need to consider - we are being given the opportunity to encourage the government to make it a law that labels need to be as specific as possible (when asked which of the following labels would lead me to buy the product, I checked the "made in a gluten free facility" over "no gluten ingredients" and "gluten free," which I would hope would encourage whoever reads this survey to understand the issue goes beyond the actual ingredients to where the product is processed). It sounds to me like some of us are offended that they are asking "how much do we really understand about celiac" and how smart or stupid or educated we are. But they do need to know how much more education they need to provide. Look, I have friends who have diagnosed celiac who are convinced spelt is fine and "a little" wheat now and then is fine, too, and who don't ever think about cross contamination issues. I don't want those people driving the discussion and influencing the law! So PLEASE, everybody do this survey and take the opportunity at the end to stress that we need to know about EVERY gluten ingredient, not just wheat, and EVERY cross contamination issue...

Tristan

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

From: <kristin_boston@...>

Sent: Thu, Apr 15, 2010 8:38 am

Subject: Re: [ ] FDA Research Study (really just a survey)

Pam,

What a strange "survey"! I answered the first few questions, until the diagnosis question and the "do you follow a gluten-free diet" question. As soon as I checked the box that said that I followed a gluten-free diet, it told me I did not qualify for the survey! What kind of survey about gluten labeling disqualifies people who are on a gluten free diet? The Celiac Disease Foundation is supporting this?

Best,

From: Pam Newbury <pknewbury@...>

Sent: Wed, April 14, 2010 11:57:18 PM

Subject: [ ] FDA Research Study (really just a survey)

Below is the information from the FDA and the link to the survey (this is a reposting from my previous post today). My understanding is that their survey is what they refer to as a “research studyâ€. If you click on the link below it will take you to the survey. Participation just means completing the survey. Pam

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.

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

Sent: Wednesday, April 14, 2010 4:36 PM

Subject: Re: [ ] FDA Research Study

How can we get to be a part of the study?

Sent from my iPhone

On Apr 14, 2010, at 3:15 PM, "Pam Newbury" <pknewbury@earthlink .net> wrote:

They want to know what consumers think about different ways of labeling foods gluten-free. I think they want to know what is confusing and what people will trust when it comes to how the gluten-free claim is presented on a label. I don’t like how they went about it, but I’m trying to be glad they are at least asking us what we think. I wrote a lot in the comments section at the end….

Pam

_

[Guest guest]

I believe that Gluten-Free is the more restrictive, all-inclusive statement.

H.

when asked which of the following labels would lead me to buy the product, I checked the "made in a gluten free facility" over "no gluten ingredients" and "gluten free,"

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

From: TrVerb@...

Sent: Thu, Apr 15, 2010 8:48 am

Subject: Re: [ ] FDA Research Study (really just a survey)

I think you must have only thought you checked the "I follow a gluten free diet" box, because that's what I did and I did the whole survey - they are obviously only interested in people who are either following it for themselves or preparing food for someone who is. I am guessing you checked the "I don't follow a gf diet" by mistake.

I am surprised by the negative response to this survey. I am thrilled that they are asking me these questions, which are clearly designed to ascertain what kind of labeling laws they need to consider - we are being given the opportunity to encourage the government to make it a law that labels need to be as specific as possible (when asked which of the following labels would lead me to buy the product, I checked the "made in a gluten free facility" over "no gluten ingredients" and "gluten free," which I would hope would encourage whoever reads this survey to understand the issue goes beyond the actual ingredients to where the product is processed). It sounds to me like some of us are offended that they are asking "how much do we really understand about celiac" and how smart or stupid or educated we are. But they do need to know how much more education they need to provide. Look, I have friends who have diagnosed celiac who are convinced spelt is fine and "a little" wheat now and then is fine, too, and who don't ever think about cross contamination issues. I don't want those people driving the discussion and influencing the law! So PLEASE, everybody do this survey and take the opportunity at the end to stress that we need to know about EVERY gluten ingredient, not just wheat, and EVERY cross contamination issue...

Tristan

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

From: <kristin_boston@...>

Sent: Thu, Apr 15, 2010 8:38 am

Subject: Re: [ ] FDA Research Study (really just a survey)

Pam,

What a strange "survey"! I answered the first few questions, until the diagnosis question and the "do you follow a gluten-free diet" question. As soon as I checked the box that said that I followed a gluten-free diet, it told me I did not qualify for the survey! What kind of survey about gluten labeling disqualifies people who are on a gluten free diet? The Celiac Disease Foundation is supporting this?

Best,

From: Pam Newbury <pknewbury@...>

Sent: Wed, April 14, 2010 11:57:18 PM

Subject: [ ] FDA Research Study (really just a survey)

Below is the information from the FDA and the link to the survey (this is a reposting from my previous post today). My understanding is that their survey is what they refer to as a “research studyâ€. If you click on the link below it will take you to the survey. Participation just means completing the survey. Pam

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.

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

Sent: Wednesday, April 14, 2010 4:36 PM

Subject: Re: [ ] FDA Research Study

How can we get to be a part of the study?

Sent from my iPhone

On Apr 14, 2010, at 3:15 PM, "Pam Newbury" <pknewbury@earthlink .net> wrote:

They want to know what consumers think about different ways of labeling foods gluten-free. I think they want to know what is confusing and what people will trust when it comes to how the gluten-free claim is presented on a label. I don’t like how they went about it, but I’m trying to be glad they are at least asking us what we think. I wrote a lot in the comments section at the end….

Pam

_

[Guest guest]

Egg label? Very interesting….I got chocolate and millet on my

survey but no eggs. I guess they are changing the products on the survey as

well as the criteria. I also thought the millet an annoying choice because many

celiacs don’t eat it and I don’t know much about possibilities for CC.

Pam

From:

[mailto: ] On Behalf Of fiestacranberry

Sent: Friday, April 16, 2010 7:42 AM

Subject: [ ] Re: FDA Research Study (really just a survey)

I thought the survey was pretty good. The only part I found kind of wacky was

when they showed the egg label. They asked if the labeling was clear, but there

was NO mention of gluten at all on it. I thought eggs were a poor choice for

this question, because they are a natural product that would not ever contain

gluten.

Lori

.._,___

[Guest guest]

millet is gluten free. It looks the survey is offering naturally gf items to see if people with celiac would still like them to be labeled gf (or, my prefenece, "processed in a dedicated gf facility"). I wouldn't worry about eggs but I would like the reassurance that other grains aren't processed in plants that also process gluten containing grains...

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

From: Pam Newbury <pknewbury@...>

Sent: Fri, Apr 16, 2010 10:27 am

Subject: [ ] FDA Research Study (really just a survey)

Egg label? Very interesting….I got chocolate and millet on my

survey but no eggs. I guess they are changing the products on the survey as

well as the criteria. I also thought the millet an annoying choice because many

celiacs don’t eat it and I don’t know much about possibilities for CC.

Pam

From:

[mailto: ] On Behalf Of fiestacranberry

Sent: Friday, April 16, 2010 7:42 AM

Subject: [ ] Re: FDA Research Study (really just a survey)

I thought the survey was pretty good. The only part I found kind of wacky was

when they showed the egg label. They asked if the labeling was clear, but there

was NO mention of gluten at all on it. I thought eggs were a poor choice for

this question, because they are a natural product that would not ever contain

gluten.

Lori

.._,___

[Guest guest]

I have a mildly different take.  I’ve called up so manycompanies that, for me, it’s not is the facility dedicated but do they use “goodmanufacturing practices†--- Hagen Dazs add the allergens to their line one ata time.  When all the runs are finished, they clean them. When the first batchcomes off they test for allergens – so I feel confident that their stuff isGF.  For me the ideal would be a ppm listing. From: [mailto: ] OnBehalf Of TrVerb@...Sent: Friday, April 16, 2010 10:39 AM Subject: Re: [ ] FDA Research Study (really just a survey) milletis gluten free. It looks the survey is offering naturally gf items to see ifpeople with celiac would still like them to be labeled gf (or, my prefenece, " processed in a dedicated gf facility " ). I wouldn't worry about eggsbut I would like the reassurance that other grains aren't processed in plantsthat also process gluten containing grains... -----Original Message-----From: Pam Newbury <pknewbury@...> Sent: Fri, Apr 16, 2010 10:27 amSubject: [ ] FDA Research Study (really just a survey) Egg label? Very interesting….I got chocolate and millet onmy survey but no eggs. I guess they are changing the products on thesurvey as well as the criteria. I also thought the millet an annoyingchoice because many celiacs don’t eat it and I don’t know much aboutpossibilities for CC. Pam From: [mailto: ]On Behalf Of fiestacranberrySent: Friday, April 16, 2010 7:42 AM Subject: [ ] Re: FDA Research Study (really just a survey) I thought the survey was pretty good. The only part I found kind of wacky waswhen they showed the egg label. They asked if the labeling was clear, but therewas NO mention of gluten at all on it. I thought eggs were a poor choice forthis question, because they are a natural product that would not ever containgluten.Lori._,___

[Guest guest]

Remember -- the survey goals are not straight-forward, obvious. It has purposes we may not see.

I didn't get eggs or millet or chocolate.

H.

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

From: TrVerb@...

Sent: Fri, Apr 16, 2010 10:38 am

Subject: Re: [ ] FDA Research Study (really just a survey)

millet is gluten free. It looks the survey is offering naturally gf items to see if people with celiac would still like them to be labeled gf (or, my prefenece, "processed in a dedicated gf facility"). I wouldn't worry about eggs but I would like the reassurance that other grains aren't processed in plants that also process gluten containing grains...

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

From: Pam Newbury <pknewburyearthlink (DOT) net>

Sent: Fri, Apr 16, 2010 10:27 am

Subject: [ ] FDA Research Study (really just a survey)

Egg label? Very interesting….I got chocolate and millet on my

survey but no eggs. I guess they are changing the products on the survey as

well as the criteria. I also thought the millet an annoying choice because many

celiacs don’t eat it and I don’t know much about possibilities for CC.

Pam

From:

[mailto: ] On Behalf Of fiestacranberry

Sent: Friday, April 16, 2010 7:42 AM

Subject: [ ] Re: FDA Research Study (really just a survey)

I thought the survey was pretty good. The only part I found kind of wacky was

when they showed the egg label. They asked if the labeling was clear, but there

was NO mention of gluten at all on it. I thought eggs were a poor choice for

this question, because they are a natural product that would not ever contain

gluten.

Lori

.._,___

[Guest guest]

There must be one – Canada uses it.

From: [mailto: ] On Behalf Of Joe Herman

Sent: Friday, April 16, 2010 8:42

AM

Cc: < >

Subject: Re: [ ] FDA

Research Study (really just a survey)

Can someone please point out research which discusses a commercially

available gluten test which tests to the level of zero ppm?

I have never seen this.

Sent from my iPhone

On Apr 16, 2010, at 8:00 AM, " Lillyth Denaghy Keogh-Quillan " <lillythdenaghykeoghcomcast (DOT) net>

wrote:

See, everyone says there is no way to make it zero ppm. I

think that is TOTAL BS. That is Canada’s standard, and

they are really great place to live with celiac.

So whenever people say it can’t be done – it IS done. It is

sheer laziness on the part of manufacturers…

Oh, and I added in the comments section that I thought GF should

only be ZERO ppm.

[Guest guest]

>

> Egg label? Very interesting..I got chocolate and millet on my survey but no

> eggs.

yeah, it was just a label for raw eggs. All it said was something like, " Joe's

Eggs " " Tasty and delicious "

Lori