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Celiac.com 05/03/2024 - In February 2019, a young woman named Chelsea received a life-changing diagnosis: celiac disease. Reflecting on her past, she realized that the signs of this condition had been present even during her high school years. Initially, she dismissed feelings of bloating and discomfort after consuming foods like pizza and pasta as the result of indulging in too much junk food. However, as she entered adulthood and began her career, her health began to deteriorate rapidly. The bloating became frequent and painful, accompanied by persistent exhaustion that made it challenging to focus on work. Reluctant to seek medical attention, she eventually consulted a doctor after developing a persistent rash on her arm, a classic sign of celiac disease. The doctor suspected irritable bowel syndrome (IBS) but decided to conduct comprehensive blood tests, including one for celiac disease. Upon receiving a positive test result for the tTG IgA antibody, indicating her immune system's reaction to gluten ingestion, the young woman experienced a mix of relief and dread. While relieved to have an explanation for her symptoms, she struggled with the idea of giving up her favorite foods. A Strict Gluten-Free Diet for Life Her treatment journey involved consultations with a gastroenterologist and adhering to a strict gluten-free diet for life. This dietary overhaul meant not only eliminating obvious sources of gluten but also being vigilant about hidden sources in sauces and seasonings. Supported by a dietitian, she gradually adapted to her new lifestyle, learning to read labels, explore gluten-free recipes, and advocate for her dietary needs in social settings. Despite occasional challenges, she found empowerment in managing her condition and cherishing the support of her partner, who joined her in adopting a gluten-free diet. Today, she embraces her life with celiac disease, prioritizing her well-being and enjoying newfound vitality. Read more about Chelsea's story at msn.com

Celiac.com 10/15/2020 - A team of researchers recently conducted an analysis of US healthcare resource utilization (HRU) and costs between celiac patients and a group of matched control subjects. The research team included Katherine Cappell, PhD; Aliki Taylor MPH, PhD; Barbara H. Johnson MBA; Steve Gelwicks, MS; Song Wang, Song PhD; Michele Gerber, MPH, MD; Danial A. Leffler, Daniel MD. They are variously affiliated with the IBM Watson Health, Cambridge, Massachusetts, USA; Takeda Pharmaceuticals International, London, United Kingdom; Takeda Pharmaceuticals International Co, Cambridge, Massachusetts, USA; and the Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA. For their study, the team used the MarketScam databases to isolate celiac patients with an endoscopic biopsy and two or more medical encounters with a celiac disease diagnosis between January 1, 2010, and October 1, 2015. As an index date, the team used the date of the first health claim with a celiac diagnosis on or after the endoscopic biopsy. They matched celiac disease cases 1:1 to with non-celiac patients on demographic characteristics and Deyo-Charlson Comorbidity Index score. The team compared clinical characteristics, all-cause, and celiac-related HRU, and price adjusted costs, between celiac patients and control subject during the one year before and two years after the index date, and matched 11,008 study subjects to 11,008 controls. Study subjects averaged about 40 years old, and just over 70% were women. The follow-up data showed that celiac patients had higher rates of all-cause and celiac-related HRU including inpatient admissions, emergency department visits, gastroenterologist visits, dietician visits, endoscopic biopsies, and gastroenterology imaging. Incremental all-cause costs were nearly $8,000 first year, and $4,000 second year, while celiac-related costs were nearly $3,000 and more than $900 for the same periods. This analysis shows that people with celiac disease face higher all-cause and celiac-related HRU costs, compared with matched non-celiac patients, and helps to quantify the extra financial challenges faced by people with celiac disease. Have you or a loved one faced higher health care costs due to celiac disease? Please share your story below. Read more at the American Journal of Gastroenterology

Celiac.com 01/19/2017 - A team of researchers recently set out to validate the celiac disease diagnoses recorded in the Danish National Patient Register. The research team included Stine Dydensborg, Dydensborg Sander, Ketil Størdal, Tine Plato Hansen, Anne-Marie Nybo Andersen, Joseph A Murray, Søren Thue Lillevang, and Steffen Husby. They are variously affiliated with the Hans Christian Andersen Children’s Hospital, Odense University Hospital, Institute of Clinical Research, University of Southern Denmark, Odense Patient Data Explorative Network (OPEN), Odense University Hospital, Odense, Denmark; Mental and Physical Health, Norwegian Institute of Public Health, Oslo, Department of Pediatrics, Ostfold Hospital Trust, Fredrikstad, Norway; Department of Pathology, Hvidovre Hospital, Department of Public Health, University of Copenhagen, Copenhagen, Denmark; Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN, USA; Department of Clinical Immunology, Odense University Hospital, Odense, Denmark. To validate the diagnoses, they used information on duodenal biopsies from a national register of pathology reports (the Patobank) and information on celiac disease-specific antibodies and human leukocyte antigen (HLA) genotypes obtained from patient medical records. Their study included all children born from 1995 to 2012 and registered as having celiac disease in the Danish National Patient Register. They reviewed all pathology reports on duodenal biopsies in the Patobank, along with medical record information on celiac disease-specific antibodies, such as anti-tissue transglutaminase 2 IgA and IgG, endomysial antibodies IgA, and anti-deamidated gliadin peptide IgG) and HLA genotypes. In the Danish National Patient Register, they found 2,247 children with celiac disease. Duodenal biopsies for 1,555 of the children (69%) were registered in the Patobank; 1,127 (50%) had biopsies consistent with celiac disease; i.e., Marsh 2–3. The team accessed the medical records of 95% of the children registered in the ­Danish National Patient Register with celiac disease. They found that 1,510 patients, or 67%, had one or more positive antibody-test results; 1,120, or 50% had anti-tissue transglutaminase 2 IgA ten times or more above the upper limit of the normal range and/or positive endomysial antibody results. The positive predictive value depended on the criteria used for validation and the types and numbers of registrations included in the analysis. Accordingly, the values ranged from 62% (95% confidence interval: 60%–64%) to 86% (95% confidence interval: 84%–87%). These findings indicate that the Danish National Patient Register is a valuable source to identify patients who have been diagnosed with celiac disease. However, they recommend that researchers validate and document diagnoses before using patient data for research purposes. Source: DovePress.com.

Celiac.com 05/24/2016 - People with type II refractory celiac disease (RCD), suffer from severe malabsorption syndrome and face a poor prognosis, as there is currently no effective treatment. Prompted by the regenerative and immune-influencing properties of mesenchymal stem cells (MSCs), a research team recently set out to assess the viability, safety, and efficacy of a series of infusions of autologous bone marrow-derived MSCs in a 51-year-old woman with type II RCD. The research team included R Ciccocioppo, A Gallia, MA Avanzini, E Betti, C Picone, A Vanoli, C Paganini, F Biagi, R Maccario, and GR Corazza. They are variously affiliated with the Department of Internal Medicine, Fondazione IRCCS Policlinico San Matteo and Università degli Studi di Pavia, the Department of Internal Medicine, Fondazione IRCCS Policlinico San Matteo and Università degli Studi di Pavia, the Cell Factory and Research Laboratory, Department of Pediatrics, Fondazione IRCCS Policlinico San Matteo and Università degli Studi di Pavia, the Clinic Cytometry Laboratory, Department of Hematology, Fondazione IRCCS Policlinico San Matteo and Università degli Studi di Pavia, Department of Molecular Medicine, Fondazione IRCCS Policlinico San Matteo and Università degli Studi di Pavia, all in Pavia, Italy. The team began by isolating, expanding, and characterizing mesenchymal stem cells using standard clinical protocols. For each patient, the team arranged to monitor malabsorption indexes, mucosal architecture, and percentage of aberrant intraepithelial lymphocytes at the time of enrollment, at each infusion, and after 6 months. The also arranged to assess mucosal expression of interleukin (IL)-15 and its receptor. Once the team determined that the expansion of MSCs was feasible, they provided the patient with four systemic infusions of 2 × 106 MSCs per kg body weight 4 months apart, with no adverse effects. Over the course of the treatment, the patient experienced gradual and durable improvement of her condition, including normalized stool frequency, body mass index, laboratory test results, and mucosal architecture. Most impressively, the expression of IL-15 and its receptor almost completely vanished. Based on this clinical case, treatment of RCD with serial MSC infusions seems to offer a path to recovery from this life-threatening condition, while blocking the IL-15 pathogenic pathway. This is the first successful treatment of refractory celiac disease. Stay tuned for further developments regarding the use of stem cell infusions to treat refractory celiac disease. Source: Mayo Clin Proc. 2016 Apr 14. pii: S0025-6196(16)30004-0. doi: 10.1016/j.mayocp.2016.03.001.

Celiac.com 09/29/2014 - Can a gluten-free diet lead to dramatic improvement of Parkinsonian symptoms in patients with celiac disease? In the January issue of the the Journal of Neurology, researchers Vincenzo Di Lazzaro, Fioravante Capone, Giovanni Cammarota, Daniela Di Giuda, and Federico Ranieri report on the case of a man who saw a dramatic improvement of Parkinsonian symptoms after gluten-free diet. The researchers are affiliated with the Department of Neurosciences at the Institute of Neurology, Campus Bio-Medico University in Rome, Italy. This case is interesting because it supports a growing body of research that indicates that, in some cases, gluten toxicity might adversely impact the nervous system, producing symptoms identical to classical Parkinson’s disease. The man in question was a 75-year-old Parkinson’s disease patient with silent celiac disease saw major improvements in his symptoms after a 3-month long gluten-free diet. Noting the positive results in this patient, and the fact that celiac disease often manifests with only neurological symptoms, even in older patients, the researchers are calling for a deeper exploration to determine if there are higher rates of celiac disease in people afflicted with Parkinson’s disease, or the related multi-factorial neurodegenerative condition known as Parkinsonism. Source: J Neurol. 2014 Feb;261(2):443-5. doi: 10.1007/s00415-014-7245-7. Epub 2014 Jan 25.

Celiac.com 09/15/2010 - Until the present study, no clinical research had been published regarding the relative effects of clinical and psychosocial variables on outcome in celiac disease. A team of researchers examined psychosocial factors that may influence disease activity in celiac patients, such as relationships among demographics, psychosocial factors, and disease activity with health-related quality of life (HRQOL), health care utilization, and symptoms. The research team included Spencer D. Dorn, Lincoln Hernandez, Maria T. Minaya, Carolyn B. Morris, Yuming Hu, Suzanne Lewis, Jane Leserman, Shrikant I. Bangdiwala, Peter H. R. Green and Douglas A. Drossman of the Center for Functional GI and Motility Disorders at the University of North Carolina, Chapel Hill, USA. The team enrolled 101 adult patients with celiac disease with the goal of charting any relationships among demographics, psychosocial factors, and disease activity with health-related quality of life (HRQOL), health care utilization, and symptoms. All patients were newly referred to a tertiary care center with biopsy-proven celiac disease. The team examined: (a) demographic factors and diet status; ( disease measures (Marsh score, tissue transglutaminase antibody (tTG) level, weight change and additional blood studies); and © Psychosocial status (psychological distress, life stress, abuse history, and coping). They then conducted multivariate analyses to predict HRQOL, daily function, self-reported health, number of physician visits, and GI symptoms, such as pain and diarrhea. They found that patients with psychological distress and poor coping skills suffered from impaired HRQOL and daily function. Patients who reported poorer health generally showed poorer coping, longer symptom duration, lower education, and greater weight loss. Patients with poorer coping, abnormal tTG levels, and milder Marsh classification generally had more physician visits. Patients with higher psychological distress and greater weight loss also showed higher pain scores. Patients with greater psychological distress and poorer coping also showed higher rates of diarrhea. Their results show that among patients at celiac disease referral centers, psychosocial factors have a greater impact on health status and GI symptoms than does disease activity. Such factors should be considered as part of the patient's treatment and prognosis. Source: Dig Dis Sci. 2010 Jul 30. DOI: 10.1007/s10620-010-1342-y