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Celiac.com 03/28/2014 - Did John F. Kennedy suffer from symptoms of undiagnosed celiac disease? Celiac disease expert Dr. Peter H. R. Green says Kennedy's known symptoms and family history make it likely that America's 35th president did in fact have celiac disease, which remained undetected in his lifetime. Dr. Green is the director of the Celiac Disease Center at Columbia University, professor of clinical medicine at the College of Physicians and Surgeons, Columbia University and attending physician at the Columbia University Medical Center. He writes that: “John F. Kennedy’s long-standing medical problems started in childhood. In Kennedy’s adolescence, gastrointestinal symptoms, weight and growth problems as well as fatigue were described. Later in life, he suffered from abdominal pain, diarrhea, weight loss, osteoporosis, migraine and Addison’s disease. Chronic back problems, due to osteoporosis, resulted in several operations and required medications for chronic pain." Greene adds that Kennedy’s Irish heritage, history of gastrointestinal complaints since childhood, diagnosis of irritable bowel syndrome and migraine, presence of severe osteoporosis, and the development of Addison’s disease all point to celiac disease. Kennedy was given steroids for his problems. Steroid use is associated with the development of osteoporosis and Addison’s disease. The occurrence of Addison’s disease in his sister, however, argues for a familial [genetic] cause of his Addison’s disease, rather than an iatrogenic one. Source: Irishcentral.com. -
Celiac.com 09/24/2010 - A team of researchers recently found that people with celiac disease, even those following a gluten-free diet, also commonly suffer from sleep disorders that are related to depression, anxiety and fatigue. Since anxiety and depression both occur at higher rates in people with celiac disease than in the general population, the researchers were curious to see how celiac disease might affect quality of sleep. The research team included F. Zingone, M. Siniscalchi, P. Capone, R. Tortora, P. Andreozzi, E. Capone, and C. Ciacci. They are affiliated with the Department of Clinical and Experimental Medicine at Federico II University of Naples in Italy. In addition to finding that sleep disorders commonly affect people with celiac disease, regardless of gluten-free status, they also found that sleep disorders are less common in celiacs who score higher on quality of life scales, while those with low quality of life scores suffer at higher rates. For their study, the team evaluated people celiac disease at diagnosis, celiacs on a gluten-free diet at follow-up, and a group of healthy control subjects. All patients completed the Pittsburgh Sleep Quality Index (PSQI), SF36, Zung and Fatigue scales and State-Trait Anxiety Inventory (STAI). Their results showed that people with celiac disease at diagnosis and those following a gluten-free diet showed higher PSQI scores than did healthy volunteers (P < 0.001). PSQI scores were no lower for those following a gluten-free diet than for the others with celiac disease (P = 0.245). People with celiacs disease at diagnosis and those on a gluten-free diet scored similarly on the other tests, but differed sharply from the healthy control subjects. Patients who had higher individual scores for overall physical and mental fitness (r = −0.327, P = 0.002, and r = −0.455, P < 0.001, respectively) had higher overall PSQI scores. Factors influencing sleep quality were depression (r = 0.633, P < 0.001), fatigue (r = 0.377, P < 0.001), state anxiety (r = 0.484, P < 0.001) and trait anxiety (r = 0.467, P < 0.001). So, if you or someone you love has celiac disease, be prepared to address sleep issues, and maybe consider doing everything possible to ensure a good night's rest. Source: Alimentary Pharmacology & Therapeutics. DOI: 10.1111/j.1365-2036.2010.04432.x -
Celiac.com 08/24/2015 - A new study reveals that U.S. Asians experience higher rates of deadlier cases of Enteropathy-associated T-cell lymphoma EATL. Enteropathy-associated T-cell lymphoma is a rare primary intestinal non-Hodgkin lymphoma (NHL) strongly associated with celiac disease. It is an aggressive disease with a median survival of approximately 10 months (Ferreri et al, 2011). Previous studies suggest that EATL may be more common in Europe and among Whites, among whom celiac disease is prevalent (Delabie et al, 2011; Ferreri et al, 2011). However, a second type of EATL (Type II) not associated with celiac disease is increasingly reported in Asia (Lee et al, 2005; Sun et al, 2011; Tan et al, 2013). To date, there have been no comparative epidemiological study in a racially diverse large population. A team of researchers recently set out to conduct such a study. The research team included Pawan K. Karanam, Mohammed Al-Hamadani, and Ronald S. Go. They are variously associated with the Departments of Medical Education and Medical Research at the Gundersen Medical Foundation in La Crosse, USA, and with the Division of Hematology at the Mayo Clinic, and the Mayo Clinic's Robert D, and Patricia E. Kern Center for the Science of Health Care Delivery, Rochester, MN, USA. The team turned to the two largest public cancer databases in the US: the Surveillance, Epidemiology, and End Results (SEER) database (http://www.seer.cancer.gov); and the National Cancer Data Base (NCDB; http://www.facs.org/quality-programs/cancer/ncdb). Using these databases, the research team was able to find and compare the cases of EATL by race. They were also able to describe the clinical features and overall survival (OS) for these cases. The team's study included all patients with an EATL diagnosis according to International Classification of Diseases for Oncology (ICD-O: 9717). The team used SEER-18 registries from 2000 to 2011 to calculate incidence. To describe clinical outcomes, they used the NCDB NHL-PUF with patients diagnosed between 1998 and 2012 for clinical characteristics and those diagnosed between 1998 and 2006 for OS. Because CoC-accredited programs report survival data only once every 5 years, OS analysis was possible only for patients diagnosed between 1998 and 2006. From the data, the team calculated the incidence rate (case/1 000 000), age-adjusted to the 2000 standard US population, according to race (White, Black, Asian/Pacific Islander, American Indian/Alaska native) using seer*stat software version 8.1.5 (National Cancer Institute, Bethesda, MD, USA) and performed risk ratio comparisons using Poisson regression. They analyzed OS using the Kaplan–Meier method and used log-rank tests to compare survival distributions between race cohorts. The prognostic effect of pertinent clinical variables were studied using multivariate Cox proportional hazards models. They found that, for the years 2000–2010, the overall age-adjusted incidence rate of EATL in the US was 0·111 per 1,000,000. Asians/Pacific Islanders had a higher incidence rate (0·236) compared with other races [White (0·101), Black (0·107), American Indian/Alaska native (0·128)]. The risk ratio of Asians/Pacific Islanders compared with non–Asians/Pacific Islanders was 2·32 [95% confidence interval (CI) 1·39–3·69; P = 0·002]. The incidences for Asians and Pacific Islanders were combined in seer*stat, therefore we could not provide separate incidences for Asians and Pacific Islanders. All tests of statistical significance were two-sided and P < 0·05 was considered significant. Source: British Journal of Haematology, Vol. 170 Issue 3. DOI: 10.1111/bjh.13555
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Celiac.com 06/04/2015 - Some researchers feel that people who self report non-celiac gluten sensitivity (SR-NCGS) and also follow a gluten-free diet might actually fall within the spectrum of irritable bowel (IBS). Interestingly, recent reports suggest that large numbers of people with inflammatory bowel disease (IBD) also follow a gluten-free diet. A research team recently assessed the relationship between IBD and self-reported non-celiac gluten sensitivity (SR-NCGS). The team included I.Aziz, F. Branchi, K. Pearson, J. Priest, and D.S. Sanders. They are variously affiliated with the Department of Gastroenterology, Royal Hallamshire Hospital, Sheffield Teaching Hospitals, Sheffield, United Kingdom; and the Gastroenterology and Endoscopy Unit in the Department of Pathophysiology and Transplantation at the Fondazione IRCCS Cà Granda Ospedale Maggiore Policlinico, Department of Pathophysiology and Transplant, Università degli Studi di Milano in Milan, Italy. To screen for SR-NCGS and the use of a GFD, they used a cross-sectional questionnaire in 4 groups: ulcerative colitis (n = 75), Crohn's disease (n = 70), IBS (n = 59), and dyspeptic controls (n = 109). They also looked at diagnostic outcomes for IBD in 200 patients presenting with SR-NCGS. A total of 25 out of 59 patients with IBS (42.4%), and 40 out of 145 patients (27.6%) with IBD reported SR-NCGS. That number was just 19 of 109 for dyspeptic control subjects (17.4%). As far a gluten-free diet, currently, 11.9% of patients with IBS, and 6.2% of those with IBD are following a gluten-free diet, as compared with just 0.9% for dyspeptic controls; P = 0.02. For the purposes of of this study, the team made no differences between ulcerative colitis and Crohn's disease. However, 40.9% of Crohn's disease patients with SR-NCGS suffered from stricturing disease, compared with 18.9% for Chrohn's patients without SR-NCGS; (P = 0.046). Crohn's disease patients with SR-NCGS showed higher overall scores on the Crohn's Disease Activity Index (228.1 versus 133.3, P = 0.002) than those without SR-NCGS. The team analyzed 200 cases presenting with SR-NCGS, and found that 197 of them, or 98.5% were most likely diet-related IBS. However, 3 of the SR-NCGS patients (1.5%) actually had IBD, with all of the associated alarm symptoms, and/or abnormal blood parameters. The results show that SR-NCGS is not exclusive to IBS, but is also seen in some patients with IBD, which is a more severe, more debilitating condition. The team is calling for randomized studies to further delineate the nature of this relationship and clarify whether a gluten-free is appropriate for certain IBD patients. Source: Inflamm Bowel Dis. 2015 Apr;21(4):847-53. doi: 10.1097/MIB.0000000000000335.
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Celiac.com 09/02/2010 - About a quarter of people who suffer from celiac disease or gluten intolerance spend a decade or more complaining to doctors before receiving an accurate diagnosis, according to a poll conducted by Coeliac UK. According to the poll, nearly 25 percent of sufferers consulted doctors about their symptoms for over a decade, while eleven percent of people with celiac disease sought help from doctors for over 20 years before receiving a proper diagnosis. People with gluten intolerance and celiac disease often suffer from persistent diarrhea, bloating and abdominal pain that is triggered by the body's immune system fighting gluten as a foreign invader. Women are twice to three times more likely to develop celiac disease than men. The poll also revealed that nearly 60 percent of the nearly 1,600 poll respondents had also been mistakenly diagnosed with anaemia, without even a follow-up test. Almost six in 10 were misdiagnosed with irritable bowel syndrome. Women being to there times more likely to develop celiac disease than men, coupled with 60 percent general misdiagnosis for irritable bowel syndrome means that women are likely being disproportionately misdiagnosed with irritable bowel syndrome. Doctors also commonly misdiagnosed gluten intolerance and celiac disease as anxiety and depression, gastroenteritis, gallstones, ulcers, ME or chronic fatigue syndrome and appendicitis. Many patients reported being accused of being hypochondriacs. Not surprisingly perhaps, one in three respondents rated their GP's knowledge about the disease as poor or very poor. Coeliac UK's CEO Sarah Sleet said guidelines from the National Institute for Health and Clinical Excellence (Nice) should be pushing up rates for celiac diagnosis. 'But with around 500,000 people currently undiagnosed in the UK there is still a long way to go and it will be another 30 years at the current rate of progress before we crack the problem,' she said. As celiac disease runs in families, the Nice guidelines also encourage screening for blood relatives, yet nearly 8 out of 10 people polled said this had not occurred in their families. Why do people with gluten intolerance and celiac disease have to wait ten or twenty years or more to get properly diagnosed? How long did you have to wait? How did your doctor do with diagnosis? Slow diagnosis? Misdiagnosis? Tell us and we'll be sure to include some of your responses in a follow-up article. Source: The Daily Mail
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