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  • Jefferson Adams
    Jefferson Adams
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    Children with Celiac Disease Not Getting Proper Follow-Up Care

      The latest report on on childhood celiac disease shows that too many kids do not receive proper follow-up care .

    Caption: Image: CC--Leonid Mamchenkov

    Celiac.com 01/17/2019 - Kids with celiac disease, especially those who are recently diagnosed, are not getting proper follow-up care, according to the latest report. A team of researchers recently set out to assess the follow-up care of children with biopsy-confirmed celiac disease over a minimum of three years following diagnosis. Their results appear in Clinical Gastroenterology and Hepatology. The research team included Bradley A. Blansky MS, Zackary J. Hintze BA, Eaman Alhassan MD, Alan M. Leichtner MD MCHPE, Dascha C.Weir MD, and Jocelyn A. Silvester MD, PhD.

    They are variously affiliated with the Harvard Celiac Disease Program, Boston, MA; the Boston Children’s Hospital, Harvard Medical School, Boston, MA; Boston University, Boston, MA; the Department of Medicine, West Virginia University, Morgantown, WV; the Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA; the Rady College of Medicine, Faculty of Health Sciences, University of Manitoba, Winnipeg, MB.

    For their study, the research team used a database to randomly select children with biopsy-confirmed celiac disease at Boston Children's Hospital from January 1, 2010 to December 31, 2014. The team followed about 50 cases per year.

    The researchers reviewed patient medical records for a minimum of 3 years of observation following diagnosis. Any child not receiving a gastrointestinal (GI) visit for 18 months was marked lost to follow-up.

    The 241 eligible subjects averaged about 10 years old at diagnosis, and 63% were female. Nearly all of the children reported symptoms, with 24% complaining of abdominal pain, and 14% of experiencing constipation. Just 2% of the children showed no symptoms at all.

    On the upside, more than 80% of the children saw a dietitian, with just under one-in-three kids attending both a dietitian-led class and an individual consultation. 

    But the records show that 25% of the kids were lost to follow-up within a year of diagnosis, and that nearly 10% received no GI visits at all after their diagnostic biopsy.

    Read more at: Clinical Gastroenterology and Hepatology (PAYWALL)


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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

    Destiny Stone
    The Importance of  Medical Follow-up After a Positive Celiac Disease Diagnosis
    Celiac.com 07/26/2010 - There is very little information currently available regarding the effects of follow up strategies for those celiac patients that follow a gluten-free diet. Therefore, it was the aim of of researchers in Italy to determine the t-transglutaminase antibodies (t-TG) in celiac disease patients while they were enrolled in a community based follow-up program over a 5-year period.
    Most patients that are diagnosed with celiac disease are told they need to adhere to a gluten-free diet for the remainder of their lives, and then they are usually left to figure it out on their own. However, it is recommended that celiac patients have regularly scheduled  follow-ups after diagnosis for early detection of celiac related complications, and to reinforce the importance of adhering strictly to a gluten-free diet.
    In the year 2000, a community based “celiac disease-Watch” follow-up program was designed by the Local Health Authority of the Brescia Province in Northern Italy. The hope for the celiac disease-Watch program was to increase awareness of celiac disease  and to standardize diagnostic criteria  for celiac disease among health care professionals.
    Beginning in January 2003, all celiac patients that reside in the Province of Brescia have been enrolled in an ongoing celiac disease-Watch follow-up program. To encourage celiac patients to enroll in the follow-up program, the Italian government gives patients a bonus to subsidize their gluten-free diets, and all patients are required to contact the Local Health Authority every year to renew their bonuses.
    Furthermore, the celiac disease-Watch program requires all patients to have their serum tested once a year for detection of t-TG antibodies. Testing for the antibodies begins 12-16 months after a celiac diagnosis. The testing is free of charge to the patients and they can choose any laboratory they like. Results from the t-TG testing is reported to the Local Health Authority, and it is a requirement to continue to receive subsidization, although patients continue to receive subsidization regardless of their t-TG results.
    Those that test positive for t-TG antibodies during their annual follow up, are referred back to the clinic where they were initially diagnosed. At the clinic they receive a clinical evaluation, and dietary counseling. While those that have a clean bill of health are scheduled for follow up appointments every 3 years.
    Through this study, researchers found that  as a result of the celiac disease-watch program, celiac patients with negative t-TG antibodies advanced from 83% to 93%. Respectively, using mathematical modelling to t-TG conversion rates observed in the study, the projected population of t-TG negative patients increased in population from 90% to 95% over the 5 year period.
    From this study, researchers were able to determine with confidence that without a follow-up strategy in place, patients with celiac disease will be inconsistent with adhering to a gluten-free diet. It is therefore strongly emphasized that regular serological and clinical follow-ups are a sustainable strategy to promote dedicated compliance to a gluten-free diet.
    Source:

    Digestive and Liver Disease doi:10.1016/j.dld.2010.05.009

    Jefferson Adams
    Celiac.com 01/05/2015 - Doctors recommend medical follow-up of celiac disease patients for gluten-free diet (GFD) adherence monitoring and complication detection. But, what happens to celiac kids who don’t get good medical follow-up?
    A team of researchers recently tried to figure out how the LTFU kids fared health-wise compared to kids who did receive follow-up, and what barriers the LTFU kids might face in successfully following a gluten-free diet.
    The research team included L. Barnea, Y. Mozer-Glassberg, I. Hojsak, C. Hartman, and R. Shamir. They are variously affiliated with the Institute of Gastroenterology, Nutrition and Liver Diseases, Schneider Children's Medical Center of Israel, Petach Tikva and the Sackler Faculty of Medicine at Tel-Aviv University in Tel Aviv, Israel.
    They had previously shown that 35% of children with celiac disease were lost to follow-up (LTFU), that is, they did not receive follow-up care for their celiac disease. The study team used a telephone questionnaire to assess 50 LTFU patients regarding frequency of follow-up, serology testing, and adherence to GFD measured by validated Biagi score. They had fifty two regular follow-up patients serve as a control group.
    The results showed that the LTFU patients had poor adherence to GFD, with an average Biagi score of 2.0 ± 1.4, compared to control scores of 3.0 ± 1.0 (p < 0.001).
    Only 22% of LTFU performed periodic celiac serology testing compared to 82% of the control group (p < 0.001).
    Fifty percent of the LTFU kids had higher prevalence of positive celiac serology tests, compared to 25% of controls, (p = 0.01).
    Just 24% of LTFU kids were National Celiac Association members, compared with 44% of control kids (p = 0.05).
    Regression analysis showed positive relationships between LTFU and poor adherence to GFD (R2 = 0.26737, p = 0.001), older age at diagnosis (R2 = 0.30046, p = 0.03), and non-membership in a celiac association (R2 = 0.18591, p = 0.0001).
    So, when the dust settled, the study showed that children LTFU were more likely to not follow a strictly gluten-free diet, and to have positive blood tests for anti-gluten antibodies. Accordingly, the team recommends that risk factors for LFTU be identified and addressed in order to improve patient care.
    Source:
    Digestion. 2014 Dec 19;90(4):248-253

    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.

    Jefferson Adams
    What Determines Gluten-Free Diet Success in Kids and Teens?
    Celiac.com 03/28/2018 - Compliance with a gluten-free diet is difficult at all ages, but particularly for teenagers due to social, cultural, economic, and practical pressures. 
    A team of researchers recently set out to assess the rates and determining factors of non-adherence to a gluten-free diet, along with the nutritional status of children and adolescents with celiac disease in a tertiary Brazilian referral center.
    The research team included Maraci Rodrigues, Glauce Hiromi Yonaminez, and Carla Aline Satiro. They are variously affiliated with the Department of Gastroenterology, Hospital das Clínicas, School of Medicine, University of Sao Paulo (SMUSP), Av. Dr Eneas de Carvalho Aguiar, 255, 05403-000, Sao Paulo, Brazil, and the Department of Pediatric, Instituto da Criança, Division of Nutrition, Hospital das Clínicas, School of Medicine, University of Sao Paulo in Sao Paulo, Brazil.
    The team’s cross-sectional and retrospective study included patients under 20 years of age, with biopsy-confirmed celiac disease, followed regularly at the Department of Pediatrics, Division of Gastroenterology, Hospital das Clínicas, University of Sao Paulo, School of Medicine, Sao Paulo, Brazil, were surveyed using a questionnaire and serologic test applied between November 2011 and February 2012. 
    The team reviewed patient charts to collect the anthropometric data along with the results of the serologic test performed both at the time of diagnosis, and after at least 1 year of a gluten-free diet. They assessed 35 patients aged between 2.4 and 19.9 years. Average patient age at diagnosis was 5.4 years. Nearly 70% of the patients were women, nearly 90% had classical celiac disease, while just over 50% had other celiac-associated conditions. Despite dietary guidance, one in five patients reported deviating from the gluten-free diet. 
    After five years of gluten-free diet, most children achieved normal height and weight, while some of the children gained an excessive amount of weight, especially in the first two years of gluten-free eating.  Most deviation from gluten-free eating was intentional, and occurred at parties and other social gatherings.
    In addition to teaching self-management skills, factors that promote knowledge and tools to manage celiac disease among independent children and adolescents include more choices and easier access of low cost gluten-free foods, and increased family discussions about the benefits of eating gluten-free diet. 
    Helping kids and adolescents with celiac disease to effectively manage their condition by closely following a gluten-free diet is crucial, and parents have an important role to play in reinforcing information from doctors and health care professionals.
    Source:
    BMC Gastroenterol. 2018; 18: 15. doi: 10.1186/s12876-018-0740-z

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    In these cases, a person likely has or gluten sensitivity. ... safe for people with celiac disease if the oats have a certification that they are gluten-free. View the full article
    Did your doctor test you for celiac disease before advising a gluten free diet?  Celiac disease can be asymptomatic and it is commonly linked to Hashimoto’s and/or Type 1 Diabetes (same genes — just a “heads up”).  If clear of celiac disease the diet might be helpful, or consider the autoimmune Paleo diet which is also gluten free.  Scripps in San Diego did a study on Crohn’s and Ulcerative Colitis patients.  Small study but they achieved a 78% remission.  They are now testing Hashimoto’s patients. The gluten-free diet did eliminate my nodules and enlarged thyroid, but I still must take thyroid hormone replacement (have had Hashimoto’s for 20 years).  Not sure if it was the diet or because I treated my celiac disease.  Calm down one autoimmune disorder and the others calm down.  That is one of my theories.  Be on the look out for autoimmune gastritis as it is also linked to Hashimoto’s and I have that too.   So, please consider going back on gluten, get tested and then treat your Hashimoto’s with a diet.    
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