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:
    Help Celiac.com:
    eNewsletter
    Donate
  • Record is Archived

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

    Scott Adams
    Scott Adams

    Refractory Celiac Disease

    Reviewed and edited by a celiac disease expert.

    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:

    Celiac.com Sponsor (A12):
    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 be satisfied that there is not another cause for the problem. Though rare, there are other conditions that can mimic, or coexist with celiac disease, and cause continued problems. The second issue is whether the patient is truly gluten-free, and have they been so long enough to conclude that there has been a failure with the diet? To make this determination I have the patient keep a complete and detailed dietary record for 3-4 weeks listing every single item they ate and have them save the wrapper or carton for review. If the dietitian or myself feel that there is any possibility of contamination then we exclude that item and wait longer. Sometimes the patient is exposed to a higher risk of gluten contamination by eating out a lot, where they do not have true control over the food preparation. We also check medications that the patient takes regularly. I also check the endomysial antibodies and gliadin antibodies. These should be negative if the patient has been gluten free for at least 6 months. The gliadin IgG may persist longer but usually its levels drop. If these are positive, this makes me think that they have had significant gluten in the diet in the recent past (Note: there still may be gluten in the diet if the test is negative). The original and follow-up biopsies should be compared to see if there has been any improvement. Assuming that these criteria are met, then one can proceed to consider the patient to have refractory disease. At that point it is important to check for complications such as lymphoma, lymphocyctic colitis and possibly pancreatic insufficiency. I treat the patient with a course of antibiotics and consider adding in pancreatic supplements to see if that will help the patients symptoms. It is only at this point that I consider some suppression of the immune system, such as with steroids or some other agent. Rarely will the patient be so ill that one must accelerate the decision to treat with steroids. Steroids are powerful medicines that can be very helpful, and even lifesaving in many cases, but have attendant risks that should be discussed prior to use. This is not medical advice and should not be used as such.



    User Feedback

    Recommended Comments

    Guest e

    Very clear explanation of the diagnostic process and treatment options.

    Link to comment
    Share on other sites


    Guest
    This is now closed for further comments

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

    Scott Adams

    Scott Adams was diagnosed with celiac disease in 1994, and, due to the nearly total lack of information available at that time, was forced to become an expert on the disease in order to recover. In 1995 he launched the site that later became Celiac.com to help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives.  He is co-author of the book Cereal Killers, and founder and publisher of the (formerly paper) newsletter Journal of Gluten Sensitivity. In 1998 he founded The Gluten-Free Mall which he sold in 2014. Celiac.com does not sell any products, and is 100% advertiser supported.


  • 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
    Am J Gastroenterol. 2002 Aug;97(8):2016-21 Celiac.com 01/29/2004 - According to researchers at the Mayo Clinic in Rochester Minnesota, the main causes of non-responsive celiac disease are: "1) gluten contamination is the leading reason for non-responsive celiac disease; 2) of non-responsive celiac disease cases, 18% are due to Refractory Sprue; and 3) alternative diseases or those coexistent with celiac disease and gluten contamination should be ruled out before a diagnosis of Refractory Sprue is made." The researchers define Refractory Sprue as "failure of a strict gluten-free diet to restore normal intestinal architecture and function in patients who have celiac-like enteropathy," and conducted a study to determine possible causes, including how many people actually have Refractory...


    Jefferson Adams
    Celiac.com 12/22/2010 - A recent evaluation of the safety and efficacy of small intestinal release mesalamine (SIRM) for symptom relief in refractory celiac disease (RCD) shows that SIRM seems to be a safe and effective treatment option, though larger tests are needed to know for certain.
    The research team conducting the evaluation included Shailaja Jamma, MD, Daniel A. Leffler, MD, Melinda Dennis, RD, Robert M. Najarian, MD, Detlef B. Schuppan, MD, Sunil Sheth, MD, and Ciaran P. Kelly, MD,
    They set out to evaluate the safety and efficacy of small intestinal release mesalamine (SIRM) for symptom relief in refractory celiac disease.
    There are currently no adequate clinical therapies for patients with refractory celiac disease and corticosteroid and/or immunosuppressants treatments...


  • Recent Activity

    1. - knitty kitty replied to Holly15892's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Growth spurt after diagnosis in adulthood

    2. - shadycharacter replied to Linedancegal's topic in Introduce Yourself / Share Stuff
      3

      25 year biopsy confirmed/ate pizza with no ill effects?

    3. - LimpToeTheTimeless replied to Holly15892's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Growth spurt after diagnosis in adulthood

    4. - trents replied to AlyO's topic in Parents, Friends and Loved Ones of Celiacs
      3

      Possible gluten exposure in 4yo


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,464
    • Most Online (within 30 mins)
      7,748

    Anthony Chirboga
    Newest Member
    Anthony Chirboga
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Popular Now

    • Hannah24
    • jessiemariecar
    • Rhonda H
    • HayleyC123
    • Touche
  • Popular Articles

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

×
×
  • Create New...