Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 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. Forward email This email was sent to angelic3@... by celiacfoundation@.... Update Profile/Email Address | Instant removal with SafeUnsubscribe™ | Privacy Policy. Celiac Disease Foundation | 13251 Ventura Blvd. | Suite 1 | Studio City | CA | 91604 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2010 Report Share Posted April 15, 2010 How can we get to be a part of the study?Sent from my iPhoneOn Apr 14, 2010, at 3:15 PM, "Pam Newbury" <pknewbury@...> 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 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. On Wed, Apr 14, 2010 at 2:36 PM, Pam Newbury <pknewburyearthlink (DOT) net> 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. ___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2010 Report Share Posted April 15, 2010 I was rejected the first time because I checked that I was involved with a celiac organization. After that I put on my other hat (mother and wife of celiacs) and I checked shopping for a biopsy-diagnosed celiac and got in (I wasn’t going to put it out to the list without taking it myself first). It does seem odd that they would accept a non-celiac with gluten sensitivity and a shopper for a biopsy-diagnosed celiac but not a celiac on a gluten-free diet. Obviously they have some weird criteria for who they want to complete the survey. Maybe they had enough responses from celiacs and wanted more from non-celiacs?  Or could be just some poor programming. Many in the celiac community (myself included) have been advocating for a labeling law that gave as much information as possible, including whether the product was produced in a shared facility, and if so whether the manufacturer has practices that prevent cross contamination. I don’t want a product to be labeled “gluten-free†if it contains gluten (as in the company I posted about several weeks ago who is making beef jerky that contains wheat but labels it gluten-free because it tested at less than 20 ppm). And I want “gluten-free†to mean the lowest amount of gluten it is possible to test for (currently about 3 or 4 ppm). I recommended a tiered system of labeling, gluten-free (tested to lowest possible gluten level in a gluten-free facility), no gluten ingredients (tested to less than 20 ppm and produced in a shared facility), and low gluten (products with no gluten that are produced in a shared facility testing less than 100 ppm) so that the consumer can decide what products suit their individual needs. The FDA thinks this is much too complicated and that it will confuse consumers and be difficult for manufacturers.  I think the consumer confusion aspect is what the FDA is trying to asses with this survey in their own clunky way. There is some thought that the change in Presidential administration has had an effect on the thinking at the FDA (hopefully towards a more consumer advocacy position). I really didn’t like much about the survey except that they were doing it, but nonetheless I am glad to see some progress and some outreach to consumers and I do support completing the survey for those who can get accepted. Pam 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 P 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? _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2010 Report Share Posted April 16, 2010 being a market researcher who designs questionnaires, and having tried several iterations to take this survey, I am quite certain that they have a balanced design which enables to make sure that they have a certain quota of each type of person. If the survey becomes unbalanced, it will stop allowing the over-quota'd and allow others, then reverse. I'm guessing we all logged on right after Pam sent out the note and they overquota'd on us.Keep trying!From: Pam Newbury <pknewbury@...> Sent: Thu, April 15, 2010 1:31:38 PMSubject: [ ] FDA Research Study I was rejected the first time because I checked that I was involved with a celiac organization. After that I put on my other hat (mother and wife of celiacs) and I checked shopping for a biopsy-diagnosed celiac and got in (I wasn’t going to put it out to the list without taking it myself first). It does seem odd that they would accept a non-celiac with gluten sensitivity and a shopper for a biopsy-diagnosed celiac but not a celiac on a gluten-free diet. Obviously they have some weird criteria for who they want to complete the survey. Maybe they had enough responses from celiacs and wanted more from non-celiacs? Or could be just some poor programming. Many in the celiac community (myself included) have been advocating for a labeling law that gave as much information as possible, including whether the product was produced in a shared facility, and if so whether the manufacturer has practices that prevent cross contamination. I don’t want a product to be labeled “gluten-free†if it contains gluten (as in the company I posted about several weeks ago who is making beef jerky that contains wheat but labels it gluten-free because it tested at less than 20 ppm). And I want “gluten-free†to mean the lowest amount of gluten it is possible to test for (currently about 3 or 4 ppm). I recommended a tiered system of labeling, gluten-free (tested to lowest possible gluten level in a gluten-free facility), no gluten ingredients (tested to less than 20 ppm and produced in a shared facility), and low gluten (products with no gluten that are produced in a shared facility testing less than 100 ppm) so that the consumer can decide what products suit their individual needs. The FDA thinks this is much too complicated and that it will confuse consumers and be difficult for manufacturers. I think the consumer confusion aspect is what the FDA is trying to asses with this survey in their own clunky way. There is some thought that the change in Presidential administration has had an effect on the thinking at the FDA (hopefully towards a more consumer advocacy position). I really didn’t like much about the survey except that they were doing it, but nonetheless I am glad to see some progress and some outreach to consumers and I do support completing the survey for those who can get accepted. Pam The survey struck me as messily constructed. H. -----Original Message----- From: Darcy <ddarcy@stanfordalum ni.org> 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: groups (DOT) com] On Behalf Of Sent: Thursday, April 15, 2010 12:03 P 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@stanfordalum ni.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? _,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2010 Report Share Posted April 16, 2010 >It does seem odd that they would accept a non-celiac with gluten sensitivity and a shopper for a biopsy-diagnosed celiac but not a celiac on a gluten-free diet. Obviously they have some weird criteria for who they want to complete the survey. Maybe they had enough responses from celiacs and wanted more from non-celiacs? Or could be just some poor programming. I checked that I have medically diagnosed celiac and I am on a gluten free diet,and I got in. Lori Quote Link to comment Share on other sites More sharing options...
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