Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate
  • Record is Archived

    This article is now archived and is closed to further replies.

    Jefferson Adams
    Jefferson Adams

    Mayo Doctors Propose New Staging System for Refractory Celiac Disease

    Reviewed and edited by a celiac disease expert.

    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.

    Celiac.com Sponsor (A12):
    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).
    Fifteen of the 57 patients died within 2 years of being diagnosed with RCD (8 with RCD I and 7 with RCD II). Over the five-year course of the follow-up, the overall survival was 70% for the entire cohort, 80% for RCD I, and 45% for RCD II. Most deaths were a result of refractory celiac disease, or to enteropathy-associated T-cell lymphoma (EATL).

    Refractory Celiac Disease generally carries a high rate of mortality, and the outcomes for RCD II have been especially poor because of the tendency for EATL to develop.

    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



    User Feedback

    Recommended Comments

    There are no comments to display.



    Guest
    This is now closed for further comments

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • About Me

    Jefferson Adams

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University. His articles, essays, poems, stories and book reviews have appeared in numerous magazines, journals, and websites, including North American Project, Antioch Review, Caliban, Mississippi Review, Slate, and more. He is the author of more than 2,500 articles on celiac disease. His university coursework includes studies in science, scientific methodology, biology, anatomy, physiology, medicine, logic, and advanced research. He previously devised health and medical content for Colgate, Dove, Pfizer, Sharecare, Walgreens, and more. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of numerous books, including "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

    >VIEW ALL ARTICLES BY JEFFERSON ADAMS

     


  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Related Articles

    Scott Adams
    Celiac that do not remain on a gluten-free diet can develop Refractory Sprue. Refractory Sprue and Collagenous Sprue patients who initially respond to a gluten-free diet many subsequently relapse despite maintaining their diet. Such patients are then refractory to further dietary therapy. In contrast, others are refractory to dietary therapy from its inception and, assuming they are truly on a gluten-free diet, may not have celiac disease; these patients are said to have unclassified Sprue. Some refractory patients with celiac disease, typical or atypical, respond to treatment with corticosteroids or other immunosuppressive drugs. In others, there is no response and malabsorption may be progressive. Collagenous Sprue is characterized by the development of a thick band of collagen...


    Scott Adams
    The following post is from Dr. Joseph Murray, one of the leading USA physicians in the diagnosis of celiac disease (celiac disease) and dermatitis herpetiformis (DH). Dr. Murray (Open Original Shared Link) of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease:
    A recent poster asked about refractory celiac disease. This is a highly complex area and is the most challenging in dealing with celiac disease. While refractory celiac disease can be defined as a patient with celiac disease whose symptoms do not respond to a gluten-free diet there are several important questions and issues in coming to the determination that the patient is really suffering from true refractory disease. To make the diagnosis conclusively, first one must...


    Jefferson Adams
    Celiac.com 01/15/2014 - 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.
    The research team included F. Biagi, P. Gobbi, A. Marchese, E. Borsotti, F. Zingone, C. Ciacci, U. Volta, G. Caio, A. Carroccio, G. Ambrosiano, P. Mansueto, G.R. Corazza. They are affiliated with the Coeliac Centre/First Department of Internal Medicine at the Fondazione IRCCS Policlinico San Matteo at the University of Pavia in Italy.
    The team conducted a retrospective multi-center case-control study based on collection of clinical and laboratory data. They looked at incidence of complicated celiac disease among celiac patients directly diagnosed in...


    Jefferson Adams
    Celiac.com 06/17/2015 - Refractory celiac disease type II (RCDII) and EATL (Enteropathy Associated T-cell Lymphoma) are pre-malignant complications of celiac disease. However, there is scant medical literature and data what role malnutrition and intestinal absorption may play in these conditions.
    With this in mind, a team of researchers set out to conduct a comprehensive assessment of nutritional status and intestinal absorption capacity of patients with RCDII and EATL, and to compare that with data of newly diagnosed celiac disease patients. The research team included N.J. Wierdsma, P. Nijeboer, M.A. de van der Schueren, M. Berkenpas, A.A. van Bodegraven, and C.J. Mulder.
    They are affiliated with the Department of Nutrition and Dietetics, the Department of Gastroenterology, the Celiac...


  • Recent Activity

    1. - trents replied to Art Maltman's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      My 5 months of Struggle

    2. - Scott Adams replied to Dana Gilcrease's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      Gluten-Free Foods

    3. - Art Maltman posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      My 5 months of Struggle


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,494
    • Most Online (within 30 mins)
      7,748

    DeniseC2219
    Newest Member
    DeniseC2219
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.4k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Popular Now

    • JA917
      11
    • Dana Gilcrease
      4
    • marion wheaton
      6
    • Jula
    • GardeningForHealth
  • Popular Articles

    • Scott Adams
    • Scott Adams
    • Scott Adams
    • Scott Adams
    • Scott Adams
  • Upcoming Events

×
×
  • Create New...