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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    REFRACTORY CELIAC DISEASE IN A COUNTRY WITH HIGH CELIAC RATES


    Jefferson Adams

    Celiac.com 03/12/2014 - Researchers and clinicians consider refractory celiac disease (RCD) to be rare, but they don't actually have solid, reliable information about how common the condition actually is.


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    Photo: Wikimedia Commons--Oona RaisanenA team of researches recently set out to establish rates of refractory celiac disease, and to identify corresponding risk factors in a Finnish population with high rates of clinically diagnosed celiac disease.

    The research team included T. Ilus, K. Kaukinen, L. J. Virta, H. Huhtala, M. Mäki, K. Kurppa, M. Heikkinen, M. Heikura, E. Hirsi, K. Jantunen, V. Moilanen, C. Nielsen, M. Puhto, H. Pölkki, I. Vihriälä, and P. Collin.

    For their study, the team looked at data on 44 treated RCD patients, 12,243 clinically diagnosed celiac disease patients, and a compared results against a control group of 1.7 million adult inhabitants.

    Specifically, the team compared clinical characteristics upon celiac disease diagnosis between the RCD patients and patients with uncomplicated disease.

    RCD affected 0.31% of diagnosed celiac disease patients, but just 0.002% in the general population.

    Of the enrolled 44 RCD patients, 68% showed type I RCD, 23% type II RCD, and 9% remained undetermined.

    Compared with the 886 patients with uncomplicated celiac disease, the 44 patients who developed RCD later in life were, when first diagnosed for celiac disease, significantly older (median 56 vs 44 years, P < 0.001), more likely to be male (41% vs. 24%, P = 0.012) and largely seronegative (30% vs. 5%, P < 0.001).

    More patients with evolving RCD showed severe symptoms upon celiac disease diagnosis, including weight loss in 36% (vs. 16%, P = 0.001) and diarrhea in 54% (vs. 38%, P = 0.050).

    These results show that refractory celiac disease is very rare in the general population.

    However, patients who are male, older, who experience severe symptoms or seronegativity when first diagnosed with celiac disease have a higher risk of developing refractory celiac disease. These patients should be closely monitored over time..

    Source:


    Image Caption: Photo: Wikimedia Commons--Oona Raisanen
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    Guest lynard

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    I am 59 and started having serious issues about 43. I believe I have RCD and I have enough problems.

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  • Related Articles

    Jefferson Adams
    Celiac.com 03/25/2011 - A group of researchers recently set out to evaluate cladribine [2-chlorodeoxyadenosine (2-CdA)] therapy in refractory celiac disease (RCD) â…¡.
    The team included Greetje J. Tack, Wieke H. M. Verbeek, Abdul Al-Toma, Dirk J. Kuik, Marco W. J. Schreurs, Otto Visser, Chris J. J. Mulder of the Department of Gastroenterology and Hepatology,  at VU University Medical Center, Amsterdam, The Netherlands.
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    The study followed a total of  32 patients over an average 31-month period. Eighteen patients responded well to 2-CdA. Patients responsive to 2-CdA showed markedly higher survival rates, compared to unresponsive patients.
    The responder group showed an 83% survival rate at the 3- and 5-year mark, compared to rates of 63% and 22% in the non-responder group. The responder group showed an 81% clinical, histological and immunological response rates at the 2-year mark, compared to rates of 47% and 41% in the non-responder group. 16% of non-responsive patients progressed into EATL, and all of these patients died.
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    Source:

    World J Gastroenterol. 2011 January 28; 17(4): 506–513. doi: 10.3748/wjg.v17.i4.506.

    Diana Gitig Ph.D.
    Celiac.com 05/27/2011 - Refractory Celiac Disease (RCD) is exactly what it sounds like: persistent malabsorption symptoms and intestinal villous atrophy even after following a gluten free diet. It is divided into two subtypes. RCDI has normal intraepithelial lymphocytes (IELs) while RCDII has abnormal IELs. RCDII is by far the more severe - there is no effective treatment, and it is often fatal within five years. Recent studies in Amsterdam and Paris have reported that RCDII can account for 28-75% of RCD patients. A group of researchers led by Ciaran Kelly at the Celiac Center at Beth Israel Deaconess Medical Center in Boston, the only specialized celiac center in New England, set out to determine if the same was true in the United States. They found a much lower incidence, 17%, of RCD patients with RCDII.
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    Alternatively, the relative dearth of RCDII cases in the US as compared to Europe could be attributed to the different genetic backgrounds of the populations involved - the "melting pot" present in the US rather than the older stocks that may be in Europe. It has been reported that RCDII correlates with HLA-DQ2 homozygosity, and in fact, the HLA-DQ8 allele was found to be more common in celiac patients in New York than in those in Paris. It is also possible that an environmental factor, such as the amount or type of gluten consumed before diagnosis, could account for the discrepancy, but this remains to be investigated. Therapeutic options for the aggressive RCDII are still severely limited; research into it should certainly continue, on both continents.
    Sources:

    Roshan et al. The Incidence and Clinical Spectrum of Refractory Celiac Disease in a North American Referral Center. The American Journal of Gastroenterology 2011; 106: 923-928. Malamut and Cellier. Is Refractory Celiac Disease More Severe in Old Europe? The American Journal of Gastroenterology 2011; 106: 929-932.

  • Recent Articles

    Jefferson Adams
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    Tammy Rhodes
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    Jefferson Adams
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    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
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