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  • Jefferson Adams
    Jefferson Adams

    Is Diagnosis for Refractory Celiac Disease on the Rise?

    Reviewed and edited by a celiac disease expert.

    Caption: New research indicates that refractory celiac disease may be on the rise.

    Celiac.com 01/14/2011 - Researchers recently presented information at the American College of Gastroenterology that indicates that more people with celiac disease might stop responding to gluten-free diets. Their new study, in the form of a retrospective chart review, turned up 17 cases of refractory celiac disease, each of which was eventually treated successfully with thiopurines.

    Researchers Christopher Hammerle, MD, and Sheila Crowe, MD, of the University of Virginia in Charlottesville, reported the results at a meeting at the American College of Gastroenterology. Hammerle called thiopurines her "treatment-of-choice for refractory celiac disease to avoid long-term steroids." The researchers stated that refractory disease appear to be on the rise. Patients with refractory celiac disease have recurrent symptoms such as abdominal pain, severe malabsorption, and intestinal damage.

    While some people note that refractory sprue might be caused by non-compliance to the gluten-free diet, current guidelines for treating refractory sprue call for doctors to review the dietary compliance of their patients, and to press for stricter adherence, and to search for other triggers of non-responsiveness only once dietary adherence issues are ruled out. In order to best understand the natural history of the celiac disease and to establish best practices for treatment, the researchers examined non-responsive celiac patients who had been seen at the University of Virginia Medical Center over the previous 10-year period.

    They found 17 such patients; 16 of whom had intraepithelial lymphocytes, four with the polyclonal phenotype and 12 with the monoclonal phenotype. One patient was untyped, while five patients also suffered autoimmune disease. The average age for diagnosis of a polyclonal phenotype was 45 years, and for the monoclonal phenotype mean age at diagnosis was 59. Overall, patients received a diagnosis of refractive disease an average of 4.7 years after receiving their diagnosis of celiac disease.

    According to the data, diagnosis for refractive celiac disease seems to be happening more recently, with all but one diagnosis happening in the last five years, and 41% diagnosed within six months of the researchers report. Every patient diagnosed with refractive celiac disease showed evidence of malabsorption, while 71% suffered from iron deficiency Anemia, 59% suffered hypo-albuminuria, 47% had osteoporosis and 24% showed elevated liver enzymes.

    According to Dr. Hammerle, steroids are the most common treatment choice for truly refractive disease. Indeed, more than four out of five refractory celiac patients (82%) first received corticosteroid treatment, but two patients went on to become steroid-dependent. Instead, Hammerle prefers to treat refractory celiac disease patients with a thiopurine. Of 14 of patients who received a thiopurine, all but one showed a notable improvement in symptoms.

    Hammerle notes that, while diagnosis for refractory disease seems to be rising, celiac disease itself is still widely underdiagnosed. Brandt concurs, noting that people with undiagnosed celiac disease, or even persistent celiac disease, can develop serious complications, including lymphoma. In people with celiac disease, this can result from increased production of cytokines, including IL-15, Hammerle said, which promote the creation of T-cells that can turn malignant.

    Source:

    • American College of Gastroenterology. Hammerle C, Crowe S "Natural history and treatment of refractory celiac disease: Experience with 17 patients at a single center" ACG 2010; Abstract 235.

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    Since the onset of celiac is gradual, could it be that people have to become progressively more diligent about avoiding gluten? I did not initially have to avoid wheat beer, but now I do. Would this be considered refractory, or is it just a progressively increasing intolerance?

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    There are a group of doctors looking at some patients labeled as celiac when that may not be all they have. The villi can be damaged by several amino acid level elements that leave the villi damage looking just like celiac.

     

    Right now there is only a small group of women that has been discovered to have this problem with gluten no matter what the genetic testing stated.

     

    I am one that is under review in a government study because of these issues. I have to eat gluten free but am not celiac. Yet my villi are damaged very bad because of my other genetic diseases. The damage is just "collateral damage" in a larger picture.

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    My sister died at age 34, 1990, with small intestine lymphoma as a result of undiagnosed celiac disease. Her initial fight began in 1972. Medical ignorance her case eventually killed her. the only reason she survived as long as she did was shear will power and all of the drugs that were experimental back then that was used on her. So here I am today (2011) at age 57, diagnosed with celiac disease (2004), doing every thing in my power to avoid the Gluten hazards and I still have a feeling in my gut (sorry, bad pun) that eventually I too will succumb to small intestinal Lymphoma. And this with the medical community SOOO aware(?) of what Celiac Disease is. THAT IS A HELL OF A TIME BOMB TO CARRY AROUND EVERY STINKING DAY!!!!!!!

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    I wonder if refractory celiac disease is really on the rise or is it that so many foods that used to be on the unsafe list have moved to the safe list combined with the amount of gluten that is allowed to be contained in a product and still be labeled gluten free. As a person who is extremely sensitive to gluten, only 1ppm makes me very ill, not to mention flour dust making the dermatitis appear and make-up, soap, shampoo, lotions etc. also making me ill.

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    I wonder if refractory celiac disease is really on the rise or is it that so many foods that used to be on the unsafe list have moved to the safe list combined with the amount of gluten that is allowed to be contained in a product and still be labeled gluten free. As a person who is extremely sensitive to gluten, only 1ppm makes me very ill, not to mention flour dust making the dermatitis appear and make-up, soap, shampoo, lotions etc. also making me ill.

    Susie - I would be interested in hearing about your history with gluten intolerance. I started out with a dramatic recovery after going gluten free. This lasted about 2 years and then I started having problems again. I have worried from time to time about refractive celiac. I have seemed to improve after taking further precautions against cross-contamination and eating fewer processed foods labeled gluten-free and not. I still could be doing better though. Did you experience a progression in your sensitivity or have you always reacted to such small amounts?

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    With age, the amount of gluten which makes me sick has shifted from ppm to molecular levels. My living and work area is devoid of gluten and over the past four years my diet has consisted of fresh produce, wild game and fresh spring water–no packaged products and only a few known gluten-free personal care products. Whenever I am in the vicinity of gluten (i.e. people who consume it, grocery stores, public events, add nausea) I react to gluten with Classic Celiac symptoms. How so? Could it be gluten breaks away from many sources in a powder/flour/dust form to travel either by finger oils into the mouth (similar to germs) or by air breathed through the mouth or nostrils and reach the intestines? Research to validate the phenomenon I (and others I have seen experience the same) necessitates isolating those with Refractory Sprue into guaranteed gluten-free environments while eating pure foods (including animal products which have not been fed grains), then exposing to gluten-dusted environments and documenting physiologic reactions. I suspect the original finding that those with Refractory Sprue are continuing to experience gluten remains true–and that this occurs from not only food contaminated with gluten, but environments which have become contaminated with gluten as well. If so, Thiopurines may provide temporary relief, with the individual remaining on a downhill slide.

     

    I hope researchers reading this comment verify or disprove this hypothesis and would like others to comment here to specific Celiac reactions they experience to airborne gluten.

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    Since the onset of celiac is gradual, could it be that people have to become progressively more diligent about avoiding gluten? I did not initially have to avoid wheat beer, but now I do. Would this be considered refractory, or is it just a progressively increasing intolerance?

    if you have gluten problems, you should not drink beer at all as it contains malt and barley, both which contain gluten.

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    if you have gluten problems, you should not drink beer at all as it contains malt and barley, both which contain gluten.

    Boyd, please keep in mind that many companies now make gluten-free beer using safe grains/ingredients.

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    I was diagnosed with celiac disease 18 yrs ago and was fine for some years until the last 5 years when I have been slowly going downhill. I went through a stressful time in my life and within months, I felt and looked ill. I have had liquid diarrhea for 17 months, just finished a course of Flagyl and now feel as if I am so weak, that I don't know how I will manage to survive much longer. Now , my GI doctor wants to perform a colonoscopy and I can't imagine going through that procedure and surviving. Does anyone have any suggestions. I do eat processed foods that say gluten free and my Ttg came out as 0.5 for gluten antibodies which signified that I was not consuming gluten. Thank you for any help from out there.

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  • About Me

    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, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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