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Prague Looks for Consensus on Adolescent and Teen Celiac Disease Management


Prague conference seeks consensus on managing teen celiac disease. Photo: CC--Ardonik

Celiac.com - 06/24/2016 - What are the main factors facing children with celiac disease as they transition into teenagers and young adults? There isn't much good data on the transition and transfer of care in adolescents and teens with celiac disease.

Recently, a team of 17 physicians from 10 countries, and two representatives from patient organizations examined the literature on transition from childhood to adulthood in celiac disease. Their The Prague consensus report looks to shine some light on the best options for providing optimal transition into adult healthcare for patients with celiac disease.

The research team included Jonas F Ludvigsson, Lars Agreus, Carolina Ciacci, Sheila E Crowe, Marilyn G Geller, Peter H R Green, Ivor Hill, A Pali Hungin, Sibylle Koletzko, Tunde Koltai, Knut E A Lundin, M Luisa Mearin, Joseph A Murray, Norelle Reilly, Marjorie M Walker, David S Sanders, Raanan Shamir, Riccardo Troncone, and Steffen Husby. See the numerous author affiliations below.

For their study, the team searched Medline (Ovid) and EMBASE for a period covering 1900 and September 2015. To assess evidence in retrieved reports, they used the Grading of Recommendation Assessment, Development and Evaluation method.

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The current consensus report aims to help healthcare personnel manage celiac disease in the adolescent and young adult, and provide optimal care and transition into adult healthcare for patients with this disease. In adolescence, patients with celiac disease should gradually assume exclusive responsibility for their care, although parental support is still important. Patients should talk with their doctors about dietary adherence and consequences of non-adherence during transition and beyond.

In most adolescents and young adults, routine small intestinal biopsy is not needed to reconfirm a childhood diagnosis of celiac disease based on European Society for Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) or North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) criteria, However, a biopsy may be considered where pediatric diagnostic criteria have not been fulfilled, such as, in a patient without biopsy at diagnosis, when additional endomysium antibody tests have not been performed to confirm 10-fold positivity of tissue transglutaminase antibodies, or when a no biopsy strategy has been adopted in an asymptomatic child.

Source:

The research team members are variously affiliated with the Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden, the Department of Paediatrics, Örebro University Hospital, Örebro, Sweden, the Division of Epidemiology and Public Health, School of Medicine, University of Nottingham, Nottingham, UK, the Division of Family Medicine, Karolinska Institutet, Sweden, the Department of Medicine and Surgery, University of Salerno, Salerno, Italy, the University of California, San Diego (UCSD), San Diego, California, USA, the Celiac Disease Foundation, Los Angeles, California, USA, the Celiac Disease Center at Columbia University, New York, New York, USA, the Division of Gastroenterology, Nationwide Children's Hospital, Columbus, Ohio, USA, the Primary Care and General Practice, School of Medicine, Pharmacy and Health, Durham University, Stockton on Tees, UK, the Ludwig-Maximilians-University of Munich, Dr. von Hauner Children's Hospital, Munich, Germany, with Hungary, representing the Association of European Coeliac Societies, (AOECS), with the Department of Gastroenterology and Centre for Immune Regulation, Oslo University Hospital Rikshospitalet, Oslo, Norway, the Department of Paediatrics, Leiden University Medical Center, Leiden, The Netherlands, the Division of Gastroenterology and Hepatology, Department of Immunology Mayo Clinic, Rochester, Minnesota, USA, Columbia University Medical Center-Division of Paediatric Gastroenterology, New York, New York, USA, Anatomical Pathology, Faculty of Health and Medicine, University of Newcastle, School of Medicine & Public Health, Newcastle, Australia Academic Unit of Gastroenterology, Royal Hallamshire Hospital & University of Sheffield, Sheffield, UK, the Institute of Gastroenterology, Nutrition and Liver Diseases Schneider Children's Medical Center of Israel, Tel-Aviv University, Tel Aviv, Israel, the Department of Medical Translational Sciences & European Laboratory for the Investigation of Food Induced Diseases, University Federico II, Naples, Italy, and the Hans Christian Andersen Children's Hospital, Odense University Hospital, Odense C, Denmark.

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1 Response:

 
Laure Stasik
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said this on
28 Jun 2016 4:37:13 AM PDT
This article is great since it addresses a huge need in a specific age population. Celiac disease is very difficult for everyone including myself. I am a nurse and a dietitian who did it all forever until I became physically disabled two years ago. I had to stop doing hospice care, teaching at 2 universities and close my gluten free store that I had since 1997. But where there is determination life goes on. I am not happy with a lot of things but I am not depressed. I help myself and others daily and so I am here to help anyone who needs it. Be well.




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Hi! My daughter is 19 was diagnosed at age 16. It took about 12-18 month s for her to fully heal from the damage and feel "normal" again. Also because of the damage done she had reactions to dairy, so you may want to try no or minimum dairy until youre fully healed. Just a suggestion. Hope you start feeling well soon!

Hi yall! New to this blog, but really glad it exists because I have lots of questions. First off, I'm Allie! I'm 17 and newly diagnosed Celiac after about 3 years of searching for answers. I initially went gluten-free on the recommendation of a friend, I felt better in about a month and then my pediatric gastroenterologist had me do the gluten challenge, and my symptoms were the worst they have ever been, and ones I barely noticed before became very present. I did the biopsy and was diagnosed, it's been about 2 weeks and my symptoms are still pretty bad, although my diet has no known sources of gluten or cross contamination. Wondering if anyone has any input on healing post gluten challenge, any tips or how long it took for you would be quite helpful! Thanks

Might want to look into a keto diet, I have UC on top of celiacs and keto is working great Yeah I have major nerve and brain issues with gluten, gluten ataxia with nerve issues and brain issues. Seems to cause my body to attack my brain and nerve system. My brain stumbles fogs, and starts looping, the confusion causes me to become really irritable, I call it going Mr Hyde. Like my mind will start looping constantly on thoughts and not move driving me literally mad, or it used to. Now days it is primary the numbness anger but the gut issues and sometimes random motor loss limit me motionless to the floor now days for the duration of the major anger effects. Used to be a lot more mental then painful gut. I did a mental trauma post on it on while back where I came out about all my mental issues with gluten.

^^^^^^ good info, tips and tricks^^^^^^^^^ yes, crumbs will make you sick. also, breathing flour/pancake mix, etc that is in the air because eventually, you're going to swallow some.

Hello I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement. Hang in there.