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Showing results for tags 'non-responsive celiac disease'.
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Celiac.com 01/09/2025 - Celiac disease is a chronic autoimmune condition triggered by consuming gluten, a protein found in wheat, barley, and rye. For most individuals with this condition, following a strict gluten-free diet is the key to managing symptoms and promoting intestinal healing. However, not all patients experience relief, even after adhering to this diet for six to twelve months. This condition, termed non-responsive celiac disease, has now been the subject of a comprehensive study analyzing its prevalence and causes. What Is Non-Responsive Celiac Disease? Non-responsive celiac disease refers to the persistence of symptoms such as diarrhea, abdominal pain, and malnutrition despite maintaining a gluten-free diet for an extended period. This phenomenon can arise either due to ongoing gluten consumption—knowingly or unknowingly—or because of other underlying medical conditions. According to the study, approximately 20 percent of individuals with celiac disease do not respond to a gluten-free diet as expected. This alarming proportion highlights the complexity of managing celiac disease and the need for further understanding of why some patients continue to suffer. The Most Common Cause: Hidden Gluten Exposure For one-third of patients with non-responsive celiac disease, the main culprit is inadvertent gluten exposure. Gluten is ubiquitous, often hiding in processed foods, sauces, and even medications. Even trace amounts can provoke an immune reaction in sensitive individuals. Many patients are unaware that they may still be consuming gluten, either due to poor food labeling or a lack of education about gluten-containing products. This underscores the need for better awareness, improved labeling regulations, and ongoing dietary counseling for individuals newly diagnosed with celiac disease. Other Causes of Persistent Symptoms Functional Gastrointestinal Disorders The study found that 16 percent of cases of non-responsive celiac disease were linked to functional gastrointestinal conditions, such as irritable bowel syndrome. These disorders, which are not caused by structural abnormalities or ongoing gluten exposure, often mimic celiac disease symptoms, making diagnosis and treatment challenging. Refractory Celiac Disease In rare but serious cases, symptoms persist due to a condition called refractory celiac disease. This occurs when the immune system continues to attack the small intestine despite strict adherence to a gluten-free diet. Refractory celiac disease is further divided into two types: Type I: Generally responds well to treatment and follows a milder course. Type II: Associated with a higher risk of progression to lymphoma, a form of cancer. Refractory celiac disease, while less common, represents a significant concern because of its potential for severe complications. Misdiagnosis or Other Conditions In some cases, a misdiagnosis of celiac disease could explain ongoing symptoms. Alternatively, other conditions such as small intestinal bacterial overgrowth, lactose intolerance, or inflammatory bowel disease may be the true cause of persistent issues. A thorough medical evaluation is crucial for ruling out these possibilities. Implications for Healthcare The findings of this study highlight several critical areas for improving care for individuals with celiac disease: Enhanced Dietary Education Patients need comprehensive guidance on identifying and avoiding hidden gluten sources. This includes recognizing potential cross-contamination in kitchens, understanding food labels, and staying vigilant about gluten-free certification. Better Food Labeling Standards Gluten labeling varies widely across countries, with some regions lacking clear regulations. Standardized global practices could help reduce inadvertent gluten exposure and improve quality of life for celiac patients. Targeted Medical Interventions For those with non-responsive celiac disease, a personalized approach is essential. This may include testing for other conditions, functional disorders, or refractory celiac disease. Additionally, new therapies targeting persistent symptoms are being developed, offering hope for those who do not respond to dietary changes alone. Why This Study Matters For individuals living with celiac disease, non-responsive cases can be particularly distressing. The persistence of symptoms can lead to ongoing health issues such as malnutrition, anemia, and decreased bone density, not to mention the emotional toll of chronic illness. This study emphasizes the importance of addressing all potential causes of persistent symptoms and tailoring care to individual needs. By identifying the main drivers of non-responsive celiac disease—such as hidden gluten and functional gastrointestinal disorders—it provides a roadmap for improving diagnosis, treatment, and overall patient outcomes. Ultimately, these findings remind us that while a gluten-free diet remains the cornerstone of celiac disease management, it is not always a cure-all. Continued research, enhanced education, and more effective treatments are essential to supporting the one in five patients who do not find relief from dietary changes alone. Read more at: onlinelibrary.wiley.com
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Celiac.com 01/06/2023 - Non-responsive celiac disease (NRCD) affects up to 15% of children with celiac disease. A Gluten Contamination Elimination Diet (GCED) is a more stringent diet consisting of fresh, whole, and unprocessed naturally gluten-free foods. A team of researchers recently set out to assess their approach to identifying and treating NRCD with budesonide and the Gluten Contamination Elimination Diet (GCED). Their results were encouraging. Here's what they found. The research team included Awab Ali Ibrahim, Victoria Kenyon, Alessio Fasano, and Maureen M Leonard. They are variously affiliated withthe Division of Pediatric Gastroenterology and Nutrition, MassGeneral Hospital for Children, Harvard Medical School, Boston, MA; the Department of Pediatrics, Harvard Medical School, Harvard University, Boston, MA; the Center for Celiac Research and Treatment, MassGeneral Hospital for Children, Harvard Medical School, Boston, MA; the Mucosal Immunology and Biology Research Center, MassGeneral Hospital for Children, Boston, MA; the Celiac Research Program, Harvard Medical School, Boston, MA. NRCD Defined Non-responsive celiac disease is defined as patients having persistent symptoms and enteropathy, with at least Marsh 3 histology, after following a gluten-free diet for at least 12 months. Researchers think that NRCD affects up to 15% of children with celiac disease, but there is limited data, and no research to date, describing treatment of children with this NRCD. Retrospective, Single Center Analysis The team performed a retrospective, single center analysis over a 5-year period of patients with celiac disease 18 years of age and under, who received treatment for persistent symptoms and enteropathy despite following a gluten-free diet. NRCD Patients Respond to GCED and Budesonide The team found a total of 22 patients with NRCD. Of the thirteen patients treated with the GCED for 3 months, nearly half experienced both histological and symptomatic resolution of celiac disease. Of the nine patients were treated with budesonide (6-9 mg), nearly ninety percent experienced both symptomatic and histologic resolution after treatment averaging three months. Further, more than two-thirds of patients who responded to the GCED, and 100% of patients who responded to budesonide, experienced remission of at least 6 months following treatment transition back to a gluten-free diet. Treatment of NRCD with the GCED and budesonide can provide benefit most NRCD patients. Most patients with NRCD can return to a standard gluten-free diet after about three months of treatment. This is some of the most promising treatment information we've seen with regard to NRCD. The article shows that many celiac patients not responding to a gluten-free diet can respond to a more stringent approach. The high response rate to this treatment offers exciting news for patients with NRCD and their physicians. Stay tuned for more on this and related stories. Read more at J Pediatr Gastroenterol Nutr. 2022 Nov 1;75(5):616-622.
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Celiac.com 12/21/2018 - For most celiac patients, treatment with the gluten-free diet marks the turning point for their health. It can take a few months for the villi of the small intestine to heal, but eventually the villi are able to absorb the nutrients in their food and the symptoms of celiac disease are alleviated. Unfortunately, there are some celiacs who don’t respond to the gluten-free diet. This is the only current treatment for the disease, resulting in a condition known as refractory celiac disease or nonresponsive celiac disease (NRCD). Although celiac experts have stated that actual refractory celiac disease, wherein damage to the small intestine is irreversible, is rare, a preliminary study reported by Med Page Today suggests that the condition is more common than the medical community once thought. Fortunately, the study also showed that refractory celiac disease patients did respond favorably to medical treatment. Celiac disease, an autoimmune disease caused by gluten, a protein found in wheat, barley, and rye, affects three million Americans, or about 1% of the U.S. population. Patients with refractory celiac disease experience abdominal pain, severe malabsorption of nutrients, and intestinal damage. A single-center preliminary study suggests that “more patients with celiac disease may stop responding to their gluten-free diets,” as reported by Med Page Today. The researchers studied non-responsive celiac patients treated at the University of Virginia Medical Center over the past decade. According to Med Page Today, “Overall, patients were diagnosed with refractive disease a mean of 4.7 years following their initial diagnosis of celiac disease.” Furthermore, diagnoses of refractory celiac seemed to occur more recently, mostly within the last five years and almost half of them within the last six months. The researchers, including Christopher Hammerle, MD, and Sheila Crowe, MD, of the University of Virginia in Charlottesville, found that the refractory celiac disease patients did respond to treatment with thiopurines. “These agents are my treatment-of-choice for refractory celiac disease to avoid long-term steroids,” Hammerle told MedPage Today. According to Shailaja Jamma, MD, and Daniel Leffler, MD, MS, in Real Life with Celiac Disease, there could be many explanations for a failure to respond favorably to the gluten-free diet. In their chapter on NRCD, they write, “you would need to be on a GFD for at least 6 months without significant improvement before we would decide that you were not responding and look for other reasons.” This is due to the fact that recovery times vary from person to person, and as long as patient seems to be improving continually over time, no matter the speed, non-responsive celiac disease is usually an unnecessary label. Jamma and Leffler found that the most common causes—designated “very common’—are gluten exposure and Irritable Bowel Syndrome (IBS). The next most common causes of NRCD, labeled as “somewhat common,” are lactose intolerance or fructose malabsorption, microscopic colitis, and small intestinal bacterial overgrowth. “Rare” causes include actual refractory celiac disease, which can be confirmed with a biopsy of the small intestine, an eating disorder, inflammatory bowel disease, which can also be confirmed with a biopsy as well as imaging studies of the small or large intestine, pancreatic exocrine insufficiency, and motility disturbances, that is, when food moves too quickly or too slowly through the intestine. Finally, food allergy and cancer are “very rare” causes of NCRD. According to the Mayo Clinic, as reported by Celiac.com, “gluten contamination is the leading reason for non-responsive celiac disease,” and estimates that 18% of non-responsive celiac disease cases are due to actual refractory celiac disease. The Mayo Clinic researchers recommend that before making a refractory celiac disease diagnosis, additional diseases as well as gluten contamination should be ruled out as causes. According to Jamma and Leffler, “The first step is often to get confirmation that you do indeed have celiac disease,” since “celiac disease can be mistakenly diagnosed when the true problem is something else.” Med Page Today points out that most of the patients with refractory celiac disease responded favorably to a thiopurine medication rather than the conventional method of treatment for the condition, steroids. This form of treatment doesn’t carry with it the risk of steroid dependence. If you have some concerns regarding your response to the gluten-free diet, it’s recommended that you talk with your doctor about a non-responsive celiac disease evaluation. An evaluation of your diet may very well confirm that you are still ingesting gluten, but if this isn’t the case, other causes can be explored by your doctor. Thiopurine seems promising as a treatment option for those who do, in fact, have actual refractory disease. Resources: 1. About.com: Refractory (Unresponsive) Celiac Disease 2. Celiac.com: Causes of Non-responsive Celiac Disease - More than 50% Continue to Ingest Gluten Unknowingly. 3. Jamma, Shailaja, MD, and Leffler, Daniel A, MD. “Nonresponsive Celiac Disease.” Real Life with Celiac Disease: AGA Press, 2010. 4. Medpage Today: ACG: More Celiac Disease May Be Refractory
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Celiac.com 04/22/2020 - Collagenous sprue, aka enteritis, is a rare mucosal small intestinal disorder marked by a clear histopathological lesion containing collagen. People who suffer from collagenous sprue frequently experience severe diarrhea, progressive nutrient malabsorption, protein depletion and weight loss. Closely linked to celiac disease, collagenous sprue is notoriously difficult to treat, and medical literature records only a few claims of successful therapy. Clinical studies suggest myriad causes for collagenous sprue, with prognoses often depending on the cause. Recently, collagenous sprue has been found in numerous diverse settings, including as a paraneoplastic feature of early malignancies, and as a result of the toxic medications including non-steroidal anti-inflammatory drugs (NSAIDs) and the angiotensin II receptor antagonist, olmesartan. In a paper published in the International Journal of Celiac Disease, Hugh James Freeman, of the Department of Medicine (Gastroenterology), University of British Columbia, Vancouver, BC, Canada, writes about the return to normal of such clinical and pathological changes, and notes that knowing the medication history of such patients is crucial to treating patients with sprue-like intestinal disease. Knowing the patient medication history can provide a crucial roadmap for treating such patients. Read more in the International Journal of Celiac Disease. 2019, 7(1), 13-15. DOI: 10.12691/ijcd-7-1-2
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