CELIAC SURVEY RESULTS

Last month, cookbook author Connie Sarros shared survey results gleaned from 589 respondents in a variety of locations. The survey doesn't strike me as very formal or scientific, but I still think something can be gained by considering the results.

Asked what is the most difficult thing about being celiac, the biggest plurality weighed in with eating out (105). Runner-up responses were eating at friends' homes (24) and gluten-free foods have a bad taste (20).

The most difficult situation: eating out at restaurants (109) followed by weddings and events where there are set menus (35) and those darn business meetings (25).

Non-sushi eaters (223) outnumbered sushi eaters (106). (Too bad, I think, as sushi can make eating out a lot easier—as can GFRAP.)

People trying to lose weight (239) outnumbered people trying to gain weight (75) and those lucky people who are happy with their weight (155). Exercisers (293) outnumbered non-exercisers (194).

Post-diagnosis, the most help came from

Internet - 173
Support group - 94
Family member - 51
Doctor - 27
Other - 23
Dietitian - 19
Friend - 19
Nutritionist - 3
I didn't get any help - 1

A question about the top two benefits of being in a support group resulted in the following responses:

We all share information, tips and advice - 71
I don't feel so alone - 29
I get personal support and talk about my symptoms and challenges - 29
We share recipes - 28
We get up to date product information - 27
I feel I am helping others - 21
I go for the social contact - 19
I go because we have vendors and I can buy products and taste free samples - 18
I get the latest medical information about celiac disease - 16
I go because we have speakers regularly - 14
Find out where to buy gluten-free foods locally - 3
I love the support group newsletters and e-mails - 11
Find out which local restaurants are serving gluten-free food - 12
Find out the current food laws - 2
I'm too shy to go to a meeting - 1

Asked if their extended families really understood the gluten-free diet, respondents weighed in as follows:

Yes - 57
Most - 55
Some - 79
Very few - 16
No - 48

Regarding how respondents really feel about the diet, the top answers were positive

62 My body feels so much better. The diet is better than being sick.
38 I am at peace with the diet
33 The whole family is eating so much healthier now

until the fourth place response:

24 Resentful, this diet stinks!

Favorite pre-packaged breads were...None, they all taste terrible! (82). After that came Whole Foods (41) and Kinnikinnick White Sandwich Bread (38) and Local Gluten-Free Bakery (27).

The favorite packaged cake mixes came from the Gluten-Free Pantry (142), followed by Namaste (95) and Pamela's (57).

Connie's new survey can be filled out here.

CANADIAN CELIAC HEALTH SURVEY

I strongly recommend reading this recently published report--on a survey of Canadians with celiac disease (via PDF)--that appeared in the April 2007 issue of Digestive Diseases and Sciences. Surveyed were members of the Canadian Celiac Association who responded to a questionnaire reviewed by Dr. Peter Green, among others.

The report offers a detailed overview of people with celiac disease in north North America and concludes with remarks that seem applicable to people with celiac disease everywhere:

The results of this study emphasize the need for early diagnosis, treatment and follow-up of celiac disease. Despite the availability of excellent antibody screening tests, delays in diagnosis of celiac disease remain a key issue. This needs to be addressed given the current prevalence estimates of 1 in 133 having celiac disease in North America. Better awareness among family physicians, dietitians and other health professionals about the variety of clinical presentations, especially anemia, osteoporosis, reproductive problems and autoimmune disorders is essential. Utilization of antibody testing for screening at-risk groups, especially first-degree relatives, would be potential strategies to reduce delays in diagnosis.

Having to follow a strict gluten-free diet for life has a major impact on the quality of life of individuals with celiac disease. Given the difficulty in determining the gluten-free nature of foods, there is a need for food manufacturers to ensure complete and accurate labeling of gluten sources and for food service establishments to provide accurate information on the gluten content of food served. Comprehensive education of newly diagnosed patients, by dietitians and physicians with expertise with expertise in celiac disease, will help optimize compliance, improve quality of life and reduce the risk the numerous complications associated with this common disease. [sic]

Also highly recommended: Rosie Schwartz's "Gluten Be Gone!"--a related article from Canada's National Post (June 5, 2007).

Thanks to dietitian Shelley Case for spreading the word about the article and this thorough survey, on which she played a leading role.