Survey: What’s impacted celiac disease the most in the last decade

It has been a busy decade for celiac disease. I even think non-celiacs would agree we heard more about celiac disease and the gluten-free diet in the last 10 years than ever before! Including me. We had it in our family for 40 years before I had any idea this disease even existed – with my daughter Emma’s diagnosis in 2000.

With the end of the decade now just days away, I got to wondering what were some of the more significant moments that had an impact on celiac disease. While I certainly have my own thoughts on this, I felt like this needed responses from the greater celiac community.

And you delivered! Starting on December 16th, I opened the unscientific survey asking “What do you think has had the greatest impact on the celiac community in the last ten years?” 94 people responded with their top three answers to my survey which closed on December 27th. Your answers and comments are very interesting. So here are two of the top three vote-getters…

3rd choice for top impact on the celiac community in the last decade: More selection at restaurants

61 percent of respondents chose dining out as their third choice in this survey. It is true. This boom has made eating out with celiac disease so much easier! Really with the exception of Outback Steakhouse’s nationwide gluten-free menu (it’s had the gluten-free menu for as long as I can remember), most other restaurants didn’t even venture into the gluten-free options until about 2006.

Then with the advent of the websites like glutenfreeregistry.com, celiachandbook.com, glutenfreeonthego.com and glutenfreetravelsite.com we all are now able to go on long-distance trips (or even just a local date-night) and have a starting point with which to find a gluten-free meal at a restaurant. One respondent commented, “Awareness at restaurants and with chefs has grown quite a bit. Gluten-free menus are a great way to start a conversation at the table and show others that it can be easy to fulfill a ‘special needs’ diet.” A parent reflected on the change in the last ten years…including finding a place “where we can go to eat out and eat safely.”

Admittedly, there is work to be done. While some restaurants really have a solid understanding of the diet and cross contamination issues, others do not. But in an interview I did with Sheila Weiss the National Restaurant Association consultant on food and nutrition policy earlier this year, she mentioned the interest restaurateurs and chefs have in pleasing patrons with special requests. “We strongly encourage customers to explain their food intolerances to their server so that the appropriate staff member can be notified in order to accommodate the special requests. Restaurants are happy to work with the customer to find menu items that work for a gluten-intolerant guest,” Weiss said. “The lines of communication are very important so that a restaurant can ensure a safe meal for their food-intolerant guest from start to finish. This personalized attention is of utmost importance to all parties involved.”

2nd choice for top impact on the celiac community in the last decade:
A tie: celebrities with ties to celiac and blogging/social networking

Respondents chose these two categories for their #2 selection 50% of the time in the survey.

Celebrities with ties to celiac disease started with Rich Gannon who was an NFL quarterback when his daughter Danielle was diagnosed with celiac disease. He and his wife Shelley have been very active in raising awareness over the last decade. Most recently the additions of Heidi Collins (CNN anchor) and Elisabeth Hasselbeck (The View co-host and author of The G-Free Diet) have really added to the awareness. In some cases it seems too bad that it takes a public figure to get people interested in a cause, but it has helped here. I am thankful that they’ve used their celebrity to bring awareness to this cause.

Blogging and social networking about celiac disease seems to be the current equivalent to a support group. It is so easy to throw a question on Twitter and get several responses within a few hours (or even minutes). I believe bloggers have made people with this disease not feel so isolated not just because there are many out there, but many of the stories they are telling are very relatable.

One respondent acknowledged the importance of bloggers and social networking, but that person worries that most of the impact has been negative. “[Blogs] allow all the kooks and nutcases free rein to promulgate their belief systems as if they were backed by solid scientific research.” This is an area in which readers need to be careful. I hope that when people start searching for celiac-related blogs, they can eventually deduce which ones are right for them. Some blogs only focus on gluten-free cooking, others are more about the celiac lifestyle. This blog, thesavvyceliac.com, is about education, research and lifestyle. Either way there must be hundreds of us out there…I would like to think that we are all trying to achieve one goal – raising awareness as accurately and honestly as we can.

Tuesday…the top choice for the biggest impact of the decade, plus the honorable mentions..

Tags: 2000-2009, 2009, celiac, community, decade, disease, gluten-free, impacts, survey, top