Do You Have Celiac Disease and Have Questions Or Need Help?
Join Celiac.com's forum / message board and get your questions answered! Our forum has nearly 1 MILLION POSTS, and over 62,000 MEMBERS just waiting to help you with any questions about celiac disease and the gluten-free diet. We'll see you there!
Follow / Share
|Get Email Alerts|
- Safe Gluten-Free Food List (Safe Ingredients)
- Unsafe Gluten-Free Food List (Unsafe Ingredients)
- Gluten-Free Alcoholic Beverages
- Celiac Disease Symptoms
- The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
- Interpretation of Celiac Disease Blood Test Results
- Is Buckwheat Flour Really Gluten-Free?
How Does Delaying Diagnosis Impact People with Celiac Disease?
Jefferson Adams is a freelance writer living in San Francisco. His poems, essays and photographs have appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate among others.
He is a member of both the National Writers Union, the International Federation of Journalists, and covers San Francisco Health News for Examiner.com.View all articles by Jefferson Adams
Celiac.com 01/11/2012 - In an effort to understand how delayed celiac disease diagnosis became the norm for most patients over the last few decades, a research team conducted a study to assess the issue. Their study also looked at how delayed diagnosis affects health-related quality of life (HRQoL) for those with celiac disease, and considered differences with respect to sex and age.
For the study, the team collaborated with the Swedish Society for Coeliacs to send a questionnaire to 1,560 randomly-chosen members, divided equally by age and sex. A total of 1,031 members (66%) responded. The team first measured HRQoL using the EQ-5D descriptive system, then translated the results to quality-adjusted life year (QALY) scores.
The team then compared the results against the results from a survey of the general population. There was some good news and some bad news.
The good news is that, while the average QALY score during the year before treatment was 0.66, it improved after diagnosis and treatment to 0.86, which is better than that the score of 0.79 for the general population.
The bad news is that they found the average person with celiac disease faced a delay in diagnosis of 9.7 years from the first symptoms, and 5.8 years from the first doctor visit.
The team concede that the delay has been reduced over time for some age groups, but contend that it still remains unacceptably long for large numbers of people.
Untreated celiac disease results in poor HRQoL, which improves or exceeds that of the general population if diagnosed and treated. Reducing the delay in diagnosing celiac disease will go a long way toward reducing the burden of celiac disease.
To do so, they say it is necessary to raise awareness of celiac disease as a common health problem, and to intensify diagnosis practices. This may, the note, make mass-screening for celiac disease an desirable option in the future.
Authors: Fredrik Norstrom, Lars Lindholm, Olof Sandstrom, Katrina Nordyke, Anneli Ivarsson
Celiac.com welcomes your comments below (registration is NOT required).
Most People Diagnosed With Celiac Disease Show No Symptoms
A greater awareness of celiac disease, coupled with better and more accurate tests for celiac disease have helped to bring about a situation where most people currently diagnosed with celiac disease show no symptoms at the time of their diagnosis.... [READ MORE]
Effectiveness of Stool Testing in the Diagnosis of Celiac Disease in Children: With Comments by Dr. Kenneth Fine
Kappler M, Krauss-Etschmann S, Diehl V, Zeilhofer
H, Koletzko S.... [READ MORE]
Future Enzyme Treatment Possible for People with Celiac Disease
J Pharmacol Exp Ther.... [READ MORE]
Histologic Follow-up of People With Celiac Disease on a Gluten-free Diet: Slow and Incomplete Recovery
Wahab PJ, Meijer JW, Mulder CJ.... [READ MORE]