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?
Mayo Doctors Propose New Staging System for Refractory 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 01/30/2009 - Doctors from the Mayo clinic are proposing a new staging system for patients with Refractory Celiac Disease (RCD) after results of a recent study showed that their system offered greater accuracy and improved survival rates over the existing staging system. The new system will rely on the cumulative effect of 5 prognostic factors evaluated at the time of the refractory state diagnosis.
Refractory Celiac Disease occurs when both the symptoms and intestinal damage continue or recur, regardless of strict adherence to a gluten-free diet. In Refractory Celiac Disease, the immunophenotype of intraepithelial lymphocytes may be normal and polyclonal (RCD I) or abnormal and monoclonal (RCD II). The goal of this study was describe the clinical characteristics, treatment, and long-term outcome in a large single-center cohort of patients with RCD.
The study was conducted by doctors Alberto Rubio–Tapia, Darlene G. Kelly, Brian D. Lahr, Ahmet Dogan, Tsung–Teh Wu, and Joseph A. Murray, all with the Mayo Clinic in Rochester, MN. The research teams assessed and compared clinical characteristics and outcomes in 57 patients with RCD: 42 with RCD I and 15 with RCD II. The team developed a scale that served as the basis for the new staging system. Using Cox regression, they assigned a point score to each of the various prognostic factors. They assigned a score of 0 to patients who showed no Refractory Celiac Disease factors. A score of 1 or 2 was assigned for presence of prognostic factors by rounding each score and taking the sum of all 5 factors for a total score.
The team then applied the system to survival rates within the study: Stage I combined patients with a point score of 0 or 1 (n = 27), stage II patients with a point score of 2 or 3 (n = 16), and stage III patients with a point score of 4 (n = 14).
- Patients with total point scores of 0 (n = 15) or 1 (n = 12), showed overall 5-year survival rates of 93% and 100%, respectively.
- Patients with a score of 2 (n = 7) or 3 (n = 9) showed 5-year overall survival rates of 80% and 65%, respectively.
- Patients with a score of 4 (n = 10) or 5 (n = 4), the 5-year cumulative survival rates of 25% and 0%, respectively.
- For patients in stages I, II, and III, the 5-year cumulative survival rate was 96%, 71%, and 19%, respectively (P < .0001).
Citing the results, the team is proposing a new staging system based on the cumulative effect of 5 prognostic factors investigated at the time of the refractory state diagnosis
Gastroenterology 2009; 136:000–000
Celiac.com welcomes your comments below (registration is NOT required).
Refractory Celiac Disease and EATL Patients Show Severe Malnutrition and Malabsorption at Diagnosis
Refractory celiac disease type II (RCDII) and EATL (Enteropathy Associated T-cell Lymphoma) are pre-malignant complications of celiac disease.... [READ MORE]
Complicated Celiac Disease Uncommon but Deadly
Complicated celiac disease is uncommon, but patients have high death rates, say a team of researchers, who recently set out to better understand the epidemiology of complications in patients with celiac disease.... [READ MORE]
Refractory Celiac Disease
The following post is from Dr.... [READ MORE]
Collagenous Sprue - Second Edition of Textbook of Gastroenterology, J.B. Lippincott Company, Philadelphia 1995
Celiac that do not remain on a
gluten-free diet can develop Refractory Sprue.... [READ MORE]