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  • Jefferson Adams
    Jefferson Adams
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    Undiagnosed Celiac Disease More Common in Women and Girls

      Earlier studies show that diagnosed celiac disease is more common in women than in men, but there isn’t much good data on sex-based differences in undiagnosed celiac disease.

    Caption: Image: CC--Discos Konfort

    Celiac.com 07/02/2018 - We know from earlier studies that diagnosed celiac disease is more common in women than in men, but there isn’t much good data on sex-based differences in undiagnosed celiac disease. To address this discrepancy, Claire L. Jansson-Knodell, MD, and her colleagues at the Mayo Clinic, in Rochester, Minnesota, conducted a meta-analysis of studies that performed both a screening and confirmatory test that included either a second serological study or a small intestine biopsy, and that that provided clear and complete data regarding sex. 

    According to data they presented at Digestive Disease Week 2018 in Washington, D.C., women are significantly more likely than men to have undiagnosed celiac disease, and the numbers are even higher for younger girls.

    In all, the researchers found 88 studies that met their inclusion criteria. These studies included data on nearly 300,000 patients. When they got done crunching the numbers, the research team demonstrated for the first time that women also had a higher rate of undetected celiac disease than men. When the team analyzed data from one subgroup focused on children, they found that rates of undiagnosed celiac disease were even higher in girls compared with boys.

    Timely diagnosis of celiac disease is important for preventing unnecessary suffering, and potential damage and disease associated with untreated celiac disease. In one recent case, a doctors found that a woman's psychotic delusions were caused by undiagnosed celiac disease and an adverse reaction to continued gluten exposure. Her condition improved quickly once she began a gluten-free diet. 

    The research team says that their findings could change approaches to clinical screening, diagnosis and management of celiac disease. They also suggest that physicians might do well to increase their suspicion levels for celiac disease when evaluation women and girls.

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    I had to order my own blood work to test for Celiacs back in 2005. My gastroenterologist couldn't come up with a diagnosis of why I felt crappy and miserable all of the time, so determined that I needed to see a psychiatrist because I was looking for constant attention. He was an idiot. In 2011 I went in for a colonoscopy, told another doctor that I had Celiacs, and this doctor said that he would determine that, and that I was to go back on a gluten diet for six months and then he'd do another blood test. I left his office. What is it with doctors and not listening to women?

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  • About Me

    Jefferson Adams 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 biology, anatomy, medicine, and science. He previously served as Health News Examiner for Examiner.com, and provided 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.

  • Related Articles

    Jefferson Adams
    Celiac.com 01/19/2015 - A team of researchers set out to determine what factors might influence dissemination of a new and validated commercial Point-of-Care Test (POCT) for celiac disease, in the Mediterranean area, when used in settings where it was designed to be administered, especially in countries with poor resources.
    The research team included S. Costa, L. Astarita, M. Ben-Hariz, G. Currò, J. Dolinsek, A. Kansu, G. Magazzu, S. Marvaso, D. Micetic-Turku, S. Pellegrino, G. Primavera, P. Rossi, A. Smarrazzo, F. Tucci, C. Arcidiaco, and L. Greco.
    For their study, the team relied on family pediatricians in Italy, and nurses and pediatricians in Slovenia and Turkey, to look for celiac disease in 3,559 children aged 1-14 years, 1,480 (ages 14-23 years) and 771 (1-18 years) asymptomatic subjects, respectively. This was done at pediatrician offices, schools and university primary care centers
    The team used a new POCT that detects IgA-tissue antitransglutaminase antibodies and IgA deficiency in a finger-tip blood drop. Subjects with positive screens and those suspected of having celiac disease were referred to a Celiac Centre to confirm the diagnosis.
    The team then estimated POCT Positive Predictive Value (PPV) at tertiary care (with Negative Predictive Value) and in primary care settings, and POCT and celiac disease rates per thousand in primary care.
    At tertiary care setting, PPV of the POCT and 95% CI were 89.5 (81.3-94.3) and 90 (56-98.5) with Negative Predictive Value 98.5 (94.2-99.6) and 98.7% (92-99.8) in children and adults, respectively.
    In primary care settings of different countries where POCT was performed by a different number of personnel, PPV ranged from 16 to 33%, and the celiac disease rates per thousand ranged from 4.77 to 1.3, while and POCT rates ranged from 31.18 to 2.59, respectively.
    This study shows that interpretation of POCT results by different personnel may influence the performance of POC, but that use of POCT is an urgent priority for diagnosing celiac disease among people of countries with limited resources, such as rural populations and school children.
    Source:
    BMC Gastroenterol. 2014 Dec 18;14(1):219.

    Jefferson Adams
    Higher Celiac Disease Rates in Women With Infertility
    Celiac.com 03/04/2015 - Women with infertility face higher rates of celiac disease, according to a recent data analysis.
    Until now, data connecting celiac disease and infertility has been contradictory. There are currently no recommendations regarding celiac disease screening in female patients with infertility.
    A research team recently conducted a meta-analysis to find out whether women with infertility have a higher risk for celiac disease. The team included Prashant Singh MBBS; Shubhangi Arora MBBS; Suman Lal MD; Tor A. Strand MD, PhD; and Govind K. Makharia MD, DM, DNB, MNAMS.
    To source information for their analysis, the team performed a literature search using the MeSH keywords "celiac disease," "gluten," and "infertility." They based celiac diagnosis on positive patient serology and biopsies showing villous atrophy. The team extracted celiac disease data in 3 groups of women with "all cause" infertility, unexplained infertility, and a group of control subjects. They then calculated pooled odds ratio (OR) and prevalence, with 95% confidence intervals (CI).
    Of 105 relevant studies, they included five studies for calculation of pooled odds ratio. Four additional studies, where data on controls were not available, were also considered for calculation of pooled rates of celiac disease.
    The analysis showed that women with infertility had 3.5 times higher odds of having celiac disease compared with the control group (OR=3.5; 95% CI, 1.3-9; P<0.01). Similarly, odds for celiac disease in women with "unexplained infertility" were 6 times greater than for control subjects (OR=6; 95% CI, 2.4-14.6).
    Of 884 women with infertility, 20 had celiac disease indicating a pooled prevalence of 2.3% (95% CI, 1.4-3.5).
    Of 623 women with "unexplained infertility," 20 had celiac disease. The pooled prevalence of celiac disease in women with unexplained infertility was 3.2% (95% CI, 2-4.9).
    Celiac disease is more common in women with what is called "all-cause" infertility and "unexplained" infertility, than in general population.
    Infertility and unexplained infertility can point to hidden celiac disease.
    Source:
    Journal of Clinical Gastroenterology. doi: 10.1097/MCG.0000000000000285

    Jefferson Adams
    Celiac.com 07/21/2016 - Celiac disease is a condition that can sometimes have vague symptoms, including mental and neurological symptoms, and that can make it hard to diagnose. Sometimes, individual cases can help to shed light on the serious nature of celiac disease, as well as the importance of a gluten-free diet in treatment. Consider the case of a 37-year-old Ph.D. candidate began to suffer from mysterious delusions, details of which appear in The New England Journal of Medicine.
    The doctors who treated her wrote that the woman, who was otherwise healthy and seemingly normal, had begun to believe that friends, family members and even strangers were conspiring to act out scenes for her in a what the woman thought was some kind of "game."
    The delusions got so bad that the woman began making threats against her family, and was admitted to a psychiatric hospital and was diagnosed with a psychotic disorder, according to the report. The doctors prescribed anti-psychotic medications, which, they wrote, did not work very well. However, during her stay, they did notice that she had several vitamin and mineral deficiencies, had lost a lot of weight and also had thyroid problems, according to the report.
    Noting the symptoms, the doctors began to suspect celiac disease, said Dr. Alessio Fasano, director of the Center for Celiac Research and Treatment at Massachusetts General Hospital in Boston and one of the doctors who treated the woman. When the doctors confirmed celiac disease, the woman refused to go on a gluten-free diet, because she was still suffering delusions and believed the doctors to be actively deceiving her about having celiac disease.
    In this case, the woman lost her job, became homeless and even attempted suicide before she was finally re-hospitalized at a psychiatric facility, where she was successfully placed on a gluten-free diet, where she improved tremendously. She came to understand that a reaction to gluten had triggered her symptoms and caused her life to spin out of control, said Dr. Fasano, and she wanted people to understand that her strange behavior was due to the gluten reaction.
    The woman's case is not typical, to be sure, but it highlights the sometimes sneaky ways celiac disease can manifest, the serious health impacts celiac disease can have, and the importance of adopting a gluten-free diet.
    Source:
    Livescience.com.

    Jefferson Adams
    Kids Can Get Accurate Celiac Diagnosis Without Biopsy
    Celiac.com 08/07/2017 - The guidelines of the European Society of Pediatric Gastroenterology, Hepatology, and Nutrition allow for diagnosis of celiac disease without biopsies in children with symptoms and levels of immunoglobulin A against tissue-transglutaminase (TGA-IgA) 10-fold or more the upper limit of normal (ULN), confirmed by detection of endomysium antibodies (EMA) and positivity for HLA-DQ2/DQ8.
    To validate this approach, a team of researchers recently performed a large, international prospective study. The primary goal was to see if the non-biopsy approach can identify children with celiac disease with a positive predictive value (PPV) above 99% in clinical practice. That means they want to make sure doctors can get it right at least 99 times out of 100 in the office. They also wanted to compare the performance of different serological tests and to see if the suggested criteria can be simplified.
    The research team included KJ Werkstetter, IR Korponay-Szabó, A Popp, V Villanacci, M Salemme, G Heilig, ST Lillevang, ML Mearin, C Ribes-Koninckx, A Thomas, R Troncone, B Filipiak, M Mäki, J Gyimesi, M Najafi, J Dolinšek, S Dydensborg Sander, R Auricchio, A Papadopoulou, A Vécsei, P Szitanyi, E Donat, R Nenna, P Alliet, F Penagini, H Garnier-Lengliné, G Castillejo, K Kurppa, R Shamir, AC Hauer, F Smets, S Corujeira, M van Winckel, S Buderus, S Chong, S Husby, S Koletzko; ProCeDE study group, P Socha, Bozena Cukrowska, H Szajewska, J Wyhowski, N Brown, G Batra, Z Misak, S Seiwerth, Y Dmitrieva, D Abramov, Y Vandenplas, A Goossens, MW Schaart, VTHBM Smit, N Kalach, P Gosset, JB Kovács, A Nagy, I Lellei, R KÅ‘bányai, K Khatami, M Monajemzadeh, K Dimakou, A Patereli, T Plato Hansen, R Kavalar, M Bolonio, H Kogler, G Amann, R Kosova, M Maglio, E Janssens, R Achten, P Frűhauf, H Skálová, T Kirchner, L Petrarca, FM Magliocca, F Martínez, V Morente, S Thanner-Lechner, M Ratschek, M Gasparetto, L Hook, D Canioni, C Wanty, A Mourin, K Laurila, M Vornane, V Nachmias Friedler, SL Morgenstern, J Amil Dias, F Carneiro, S Van Biervliet, S Vande Velde, H Banoub, S Sampson, AM Müller, A Ene, M Rafeey, and IAT Eftekhar Sadat. See the team’s individual affiliations below.**
    For their study, the team gathered data from consecutive pediatric patients 18 years or younger from 33 pediatric gastroenterology units in 21 countries. Patients all tested positive for TGA-IgA from November 2011 through May 2014, and all patients were on a gluten-containing diet. Local centers recorded patient symptoms, including measurements of total IgA, TGA, and EMA, and biopsy findings. The team recorded malabsorption when the children had chronic diarrhea, weight loss or insufficient gain, growth failure, or anemia.
    They directly compared central findings from 16 antibody tests (8 for TGA-IgA, 1 for TGA-IgG, 6 for IgG against deamidated gliadin peptides, and 1 for EMA, from 5 different manufacturers) 2 HLA-DQ2/DQ8 tests from 2 manufacturers, and histopathology findings from the reference pathologist. They based final diagnoses on local and central results. When all local and central results agreed for celiac disease, the team recorded those cases as proven celiac disease. Patients with TGA-IgA levels that were 3-fold or less below the ULN, but otherwise showed no indications of celiac disease, were classified as no celiac disease.
    The team conducted central histo-morphometry analysis on all other biopsies, and the cases were given a blind review. Inconclusive cases were regarded as not having celiac disease for better diagnostic accuracy and recruited 803 children for the study. They excluded 96 due to incomplete data, low level of IgA, or poor-quality biopsies, leaving 707 children, of whom 645 were diagnosed with celiac disease, 46 were found not to have celiac disease, and 16 had inconclusive results. The group was 65.1% female, and patients averaged 6.2 years old.
    Results from local laboratories of TGA-IgA 10-fold or more above ULN, a positive EMA result, and any one symptom identified children with celiac disease (n=399) with a PPV of 99.75 (95% CI, 98.61-99.99). The PPV was 100.00 (95% CI, 98.68-100.00) in 278 patients when only malabsorption symptoms were used instead of any one symptom.
    Inclusion of HLA analyses did not increase accuracy.
    Findings from central laboratories differed greatly for patients with lower levels of antibodies, but when levels of TGA-IgA were 10-fold or more the ULN, PPVs ranged from 99.63 (95% CI, 98.67-99.96) to 100.00 (95% CI, 99.23-100.00).
    This study confirms that children can be accurately diagnosed with celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.
    HLA analysis is not required for accurate diagnosis.
    Source:
    Gastroenterology. 2017 Jun 15. pii: S0016-5085(17)35736-0. doi: 10.1053/j.gastro.2017.06.002.  
    **The members of the research team are variously affiliated with the Dr. von Hauner Children’s Hospital, Ludwig-Maximilian’s University Munich, Celiac Disease Center Heim Pál Children’s Hospital, Budapest and Dept. of Pediatrics, University of Debrecen, Hungary, University of Medicine and Pharmacy “Carol Davila” and National Institute for Mother and Child Health “Alessandrescu-Rusescu”, Bucharest, Romania, Institute of Pathology, Spedali Civili, Bresci, Italy, Dept. of Clinical Immunology, Odense University Hospital, Denmark, Dept. of Pediatrics, Leiden University Medical Center, the Netherlands, Dept. of Pediatric Gastroenterology and Hepatology, La Fe University Hospital, Valencia, Spain, Dept. of Pediatric Gastroenterology, Royal Manchester Children's Hospital, Manchester, United Kingdom, Dept. of Translational Medical Sciences & European Laboratory for the Investigation of Food-Induced Diseases, University Federico II, Naples, Italy, Center for Child Health Research, University of Tampere and Tampere University Hospital, Tampere, Finland, Dept. of Pediatric Gastroenterology & Hepatology, Children Medical Center, Tehran University of Medical Sciences, Iran, Dept. of Pediatrics, University Medical center (UMC) Maribor, Slovenia, Hans Christian Andersen Children's Hospital, Odense University Hospital, Denmark, Division of Gastroenterology, Hepatology and Nutrition, First Dept. of Pediatrics, Children's Hospitals "Agia Sophia", University of Athens, Athens, Greece, Gastroenterology Outpatient Clinic, St. Anna Children's Hospital, Medical University Vienna, Vienna, Austria, Dept. of Pediatrics, First Faculty of Medicine and General Teaching Hospital, Charles University, Prague, Czech Republic, Dept. of Pediatrics, Sapienza University of Rome, Italy, Dept. of Pediatrics, Jessa Hospital, Hasselt, Belgium, Dept. of Pediatric Gastroenterology, Addenbrookes Hospital, Cambridge, United Kingdom, Dept. of Pediatric Gastroenterology, Hepatology and Nutrition, Hôpital Necker-Enfants Malades, Paris, France, Dept. of Pediatric Gastroenterology and Nutrition, Hospital Universitari Sant Joan, Reus, Spain, Institute of Gastroenterology, Nutrition and Liver Diseases, Schneider Children's Medical Center of Israel, Sackler faculty of Medicine, Tel Aviv University, Tel Aviv, Israel, Dept of Pediatrics, Medical University of Graz, Graz, Austria, Université Catholique de Louvain, IREC, PEDI, Cliniques universitaires Saint Luc, Brussels, Belgium, Dept. of Pediatric Gastroenterology, Hospital S. João, Porto, Portugal, Dept. of Pediatric Gastroenterology, Hepatology and Nutrition, Ghent University Hospital, Ghent, Belgium, Dept. of Pediatrics, St. Marien Hospital, Bonn, Germany, Queen Mary's Hospital for Children, Carshalton, United Kingdom, Department of Gastroenterology, Hepatology, Nutritional Disorders and Pediatrics, Pathology Department, Children's Memorial Health Institute, Warsaw, Poland, Pediatrics, Medical University of Warsaw, Pathomorphology, Pediatric University Hospital, Warsaw, Poland, Royal Manchester Children’s Hospital, Manchester, UK, Referral Center for Pediatric Gastroenterology and Nutrition, Children’s Hospital Zagreb, Institute of Pathology, Medical School University of Zagreb, Zagreb, Croatia, Russian Medical Academy of Continuing Postgraduate Education, Pathology, Kidz Health Castle, UZ Brusses, Brussel, Belgium, Pediatrics, Pathology, Leiden University Medical Center (LUMC), Hôpital Saint Vincent de Paul, Catholic University, Gastroenterology & Nephrology, Pathology, Heim Pál Children's Hospital, Budapest, Pediatric Gastroenterology, Hepatology &Nutrition, Children Medical Center, Tehran University of Medical Science and Mofid Children Hospital, Shahid Beheshti University of Medical Sciences, Pathology Unit, Children Medical Center Hospital Tehran, Division of Gastroenterology and Hepatology, First Department of Pediatrics, Children’s hospital «Agia Sofia», University of Athens, Clinical Pathology, Odense University Hospital, Department of Pathology, University Medical Center Maribor, Maribor, Slovenia, Pediatric Gastroenterology & Hepatlogy and David Ramos, Pathology Unit, La Fe University Hospital Valencia, St. Anna Children's Hospital, Department of Pathology, Medical University Vienna, Dept. of Translational Medical Sciences & European Laboratory for the Investigation of Food-Induced Diseases, University Federico II, Naples Italy, Pediatrics, Pathology, Jessa Hospital, Hasselt, Pediatrics and Adolescent Medicine, pathologist, Institute of Pathology, First Faculty of Medicine and General University Hospital, Charles University, Prague, Czech Republic, Institute of Pathology, Ludwig Maximilian's University Munich, Munich, Germany, Pediatrics and Infantile Neuropsychiatry, Radiology, Oncology and Human Pathology, “Sapienza” University, Rome, Italy, Gastroenterology Unit, Pathology Unit, Hospital Universitari de Sant Joan de Reus, IISPV, URV, Pediatrics, Institute for Pathology, Medical University of Graz, Austria, Pediatric Gastroenterology, Hepatology & Nutrition, Pathology, Cambridge University NHS Foundation Trust, Addenbrookes Hospital, Cambridge, UK, Anatomo-Pathology, Hôpital Necker-Enfants Malades, Paris, France, Pediatric Gastroenterology, Pathology Unit, Université Catholique de Louvain, Cliniques universitaires Saint Luc, Brussels, Belgium, Centre for Child Health Research, University of Tampere and Tampere University Hospital, Tampere, Finland, Institute of Gastroenterology, Nutrition & Liver Diseases, Schneider Children's Medical Center, Department of Pathology, Rabin Medical Center, Sackler Faculty of Medicine, Tel Aviv University, Israel, Hospital S. João, Porto, Portugal, Dept. of Pediatric Gastroenterology, Hepatology and Nutrition, Ghent University Hospital, Gent, Belgium, Queen Mary's Hospital for Children, Dept of Pathology, Epsom & St Helier University NHS Trust, Carshalton, UK, Department of Pathology, University of Bonn, Bonn, Germany, Histology Department National Institute for Mother and Child Health, Bucharest, Romania, and with the Liver & Gastrointestinal Research Center, Pathology Unit, Tabriz University of Medical Sciences.

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