Survey Describes Hopes for the Next Decade in the Celiac Community

Welcome 2010 and a new decade.  The last ten years brought about a lot of change in the celiac community.  Many more people were diagnosed with it, there was groundbreaking research, even late in the decade restaurants started to welcome gluten-free dining more.

Many of us may not have seen that progression coming.  But it did.  So is the bar higher for the next decade?  In mid-December I conducted an unscientific survey asking the question “What would you like to see happen for celiacs in the next decade?” While 94 people responded to the survey, some of the feedback revealed multiple answers:  107 to be precise.  I’ll try to keep the blog post as tight as I can with all the great answers I received.

#5 Restaurant Awareness and Choices

9% of the answers in this survey had to do with the desire to have greater gluten-free awareness in restaurants, which includes better food choices, menus and education on ingredients and cross-contamination.  In the last 2 years or so, restaurants have picked up on the need and/or desires of the gluten-free community.  Many cater to gluten-free with a separate menu, while others choose to go with the flow a little more and assist only when people make special requests.   Either way, as some respondents noted, more restaurants really need to get educated about gluten-free and cross contamination.  One respondent said, “Lots of times the chef knows about [gluten-free foods], but the [rest of the] staff are clueless.”

#4 More Mainstream and Cheaper Gluten-Free Food

This has really only happened in the last year or so.  And we’ve noticed.  12% of the answers were about getting more mainstream foods on board.  With General Mills leading the way with Chex and Betty Crocker’s line of gluten-free mixes, the gluten-free public came to realize what we were missing: big corporations’ acknowledgment that we exist!  Not only that, it turns out they can make a good product and make money from us!

We also took notice that General Mills’ gluten-free products were cheaper than nearly all other comparable gluten-free products.  Cost was part of this answer.  Many celiacs are hoping with gluten-free food going mainstream, costs will come down.  “The prices are ridiculous for things made of commonly-available foods like rice, potatoes and tapioca,” one person said.  Gluten-free foods are typically 2-3 times more expensive than their gluten-filled counterpart.

#3 Widespread Awareness of Celiac Disease

13% of the answers were specifically about the greater awareness of celiac disease and the gluten-free lifestyle.  One respondent put it well, “I want it to be as widespread and taken as seriously as peanut allergies!  I hope that it somehow becomes more talked about and widely accepted.”

#2  More Diagnosis and Doctor Education of Celiac Disease

With the spreading of awareness hopefully more people go to their doctor to get tested for celiac disease.  However there’s still a major concern. With a potential of 3-million Americans having celiac, and 97% undiagnosed* we have a right to be concerned about this issue.  In fact 16% of the answers were about “more diagnoses”, “quicker diagnoses” or “more education for doctors”.

“I hope all doctors (not just some) will consider celiac disease as a possibility when patients present with symptoms consistent with it,” one person wrote. “Quick diagnoses would be a boon…”  Another person  said “…doing away with the ‘gluten challenge’ as a the primary diagnostic tool.  Would you make a peanut-allergic child eat peanuts ‘just to be sure’?  Yet the medical community has no qualms about poisoning us just because the doctor doesn’t know any better.”

And one other person had a great goal of “100% diagnosis rates”.  Wow!

#1 Hope For the Next Decade: a Cure or a Pill

This didn’t surprise me.  22% percent of the answers were along these lines. Most people talked about a pill  you could take…just in case of gluten ingestion.  “I hope that it will be possible (e.g.) taking a pill) for us to enjoy proper food or go to a friend’s house without asking them to supply a [gluten-free] option for us, even if only for a day at a time,” one person wrote.

Another person wrote, “medication for those with celiac so they can occasionally eat gluten and [then] immunizations for those at risk.”

Will a cure happen in the next ten years?  It will be exciting to find out the strides we make between now and 2019!

Have a great new year!

*Source: University of Chicago’s Celiac Disease Center

Tags: awareness, cure, decade, diagnosis, doctors, education, food, immunization, mainstream, pill, restaurant, survey