Overwhelming response to gluten-free survey may be causing problems

The gluten-free community is responding with such force to the new FDA survey on gluten-free shopping and labeling that some problems have developed.
In short, the 700 responses that have come in in the last 24 hours seem to be swamping the system, according to Katherine Kosa of RTI International, the non-profit research organization contracted by the FDA to conduct the survey.
That might be one of the reasons some people are getting told they are not qualified to participate, Kosa said.

The survey was initially released to celiac research and treatment centers a few weeks ago, but after only 250 responses were received in two weeks, celiac support groups were given the survey link to share with the gluten-free community. Kosa said one group sent out 7,000 e-mails.

I personally have also been urging those who follow the gluten-free diet to quickly fill out the survey and encouraging others to spread the word.

It seems this might have worked too well. Kosa received numerous emails this morning from people who said they were not allowed to complete the survey and did not understand why. She said there were no problems when the survey was first released to the celiac centers and the response rate was low.

But Kosa noted there might be other reasons people are being told they are ineligible to participate.

The survey was designed to collect information from the average celiac and gluten intolerant consumer (including those who shop and prepare meals for someone else who has celiac disease).

It is also interested in responses only from those who buy packaged food and read labels.

“We want people who shop, buy packaged food and read labels. We don’t want the person who knows more than the average (gluten-free) consumer” Kosa said. “We don’t want the ‘right’ answers. We want to know what people know.”

That means you will not qualify if you work for the food industry or a retailer, a gasteroenterologist, a celiac disease support group, a celiac disease research center or a government agency related to food.

You also will not qualify if you say you do not purchase packaged food or have not shopped for gluten-free food in the last month or say you do not read labels.

Kosa said she understands the frustration the survey may be causing. “We know how passionate (gluten-free consumers) are and how frustrating it is to be told you don’t qualify,” she said. Kosa noted that she has talked to the FDA about this and the agency is looking into the possibility of enabling those who do not qualify to make comments in another way. There is no guarantee that will happen though.

The FDA will collect 4,400 responses, which Kosa says is a relatively large number for a survey. That will include responses from consumers who do not have celiac disease or gluten intolerance or care for someone who does. These people will be drawn from an e-panel of consumers. The FDA is interested in their responses because of the increasing number of people buying gluten-free items even when they do not have celiac disease for gluten intolerance, according to Kosa.

The deadline for responding to the survey is April 30, but at the current rate the FDA will reach its limit much earlier than that.

So what should you do if you have not responded or have been kicked off the survey as ineligible?

I would suggest you stop trying today until any problems with the survey can be worked out. Over the next few days, things should slow down, and you will probably be able to get through. Once things slow down, you will know that if you are told you are ineligible, it’s accurate based on what the survey is trying to find out and not simply a system that is over-worked

Kosa apologized for the problems. I do, too, for my role in urging everyone to get moving to fill out the survey fast. I know how easy it is to forget something if you put it off and I know the completion of the survey will play a role in how quickly the definition for the gluten free label is approved.

I think the response rate is an indication of how important this is to those who follow the gluten free diet. But if our enthusiasm overloads the system, it does not really do us any good.

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  • Thanks Amy! To add to this overwhelming response, I just received an email from NFCA urging people to participate. I will try again next week since I got kicked out today. Based on my answers, I should qualify for the survey.

  • Amy

    I just saw that and let Katherine know. And you are right, you should qualify.

  • I thought the survey was confusing when they got to the box of millet image for questions. I actually avoid millet (I know not all Celiac do) so I was unsure how to answer the question. I wish they had picked something less controversial like rice crackers, etc.

    However, I think overall the survey will hopefully help the government understand that gluten free is definitely a big concern among a large group of Americans! I hope they get the bugs worked out so that more people can respond.

  • I apologize too, as I put a link to it on my blog yesterday (have since taken it off). It has taken so long to get to this point, that I got overly excited and ambitious on spreading awareness of the survey, without considering the potential consequences.

    Thanks for posting this Amy!

  • C

    I also should qualify, and also got told I didn’t. Maybe they met their survey quota of people like me? 700 responses should NOT cause probs. I did a survey for my masters and got @wilw to kindly post it to his blog – I got 2000 responses in less than 24 hours (literally overnight). I just used survey monkey or one similar. Hmmm!

  • Amy

    I do not know enough about how this particular survey works to weigh in on why the number of responses would cause problems. Katherine was very helpful and seemed quite open in discussing the situation. Although she expected the FDA to get the responses needed long before the April 30 deadline, she did not say they had enough already.
    Remember, too, that not everyone is being disqualified because of system problems. Some people legitimately do not meet the survey criteria. The problem right now is that you can’t be sure if you were disqualified correctly or incorrectly.

  • Amy

    It seems C was correct in thinking that perhaps the problem with the survey was that the FDA has reached its quota. That is exactly what happened and the survey is about to be closed. See my new blog post. I guess that masters survey taught valuable lessons about how these things work.

  • This survey, while posted by the FDA was posted on many International websites, such as in Canada, and I, as a Canadian answered it – so there will be non Americans included as the criteria at the beginning did not eliminate us. In Canada we consume a lot of US made GF food – 180 products were created in the USA in 2009 alone, and so you have to consider that some of the respondants answering are from other countries who are affected by the FDA’s expected ruling. I had no problems getting into and answering the survey. I am glad they are working through their problems to get more Celiac’s to answer it however based what has been said on this blog, the FDA is cutting out an audience of many diagnosed Celiac’s by dissallowing those who answer Yes to a rule that is driven into a Celiac’s head which is to read ingredient labels – however I find a lot of Celiac’s who SAY they read labels really do NOT know how to. They are constantly eating products they think are GF by reading the ingredients, however due to the strict 20 ppm GF legislation in Canada these prepackaged products are not labeled GF for a reason and cannot be considered GF for consumption. Products need to be labeled GF and have Processed in a GF Facility on them before Celiac’s who are recently diagnosed will have an easier time adopting to the GF diet.