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Celiac.com 06/21/2016 - Transitioning from childhood to adulthood is hard, but doing it with celiac disease can be harder. Beginning in adolescence, people with celiac disease should assume full responsibility for their care. So how can a parent best help teens transition to full control over their celiac disease and gluten-free diet? According to the Prague Consensus Report, a few simple measures can help children to successfully manage caring for their conditions as they transition into teenagers and young adults. One of the study's authors is Dr. Steffen Husby of Hans Christian Andersen Children's Hospital, Odense University Hospital in Denmark. Get a Formal Diagnosis "We think it most important to stress that celiac disease is a definite disorder," Husby told Reuters Health. "We should make a regular diagnosis of celiac disease before putting kids on a gluten free diet." Consult a Doctor About Transition "We recommend close communication with the doctor when transitioning to adult care," said Dr. Husby. Ideally, teens with celiac disease should visit a clinic with pediatric and adult services that handles such transitions, the study authors write. Talk About the Transition Talk with a doctor about dietary adherence and consequences of non-adherence during transition. Consider asking your child's pediatrician to include a "transition document," which includes written information on the patient's diagnosis, follow-up, body composition data, other health conditions and dietary compliance. Know the Importance of Biopsy The authors also conclude that most teens and young adults do not need routine small intestine biopsies to reconfirm a childhood diagnosis of celiac disease, unless pediatric diagnostic criteria, like a blood test for gluten antibodies, were never fulfilled, according to the recommendations published online April 18 in the journal Gut. In most adolescents and young adults, routine small intestinal biopsy is not needed to reconfirm a childhood diagnosis of celiac disease, based on criteria set by the European Society for Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) or North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN). However, biopsy may be advisable in patients who did not have biopsy at diagnosis, or when other pediatric diagnostic criteria are incomplete, if additional endomysium antibody test have not been performed to confirm 10-fold positivity of tissue transglutaminase antibodies, or in cases of asymptomatic children who may have been followed a no biopsy strategy to that point. Young people tend not to register risk for future health consequences, whether the risk is lung cancer as a result of smoking or osteoporosis as a result of eating gluten, says Dr. Patience White, co-director of Got Transition, the Center for Health Care Transition Improvement at the National Alliance to Advance Adolescent Health in Washington, D.C. "All youth…need a better transition," she added. These simple steps can help teens to manage their own celiac disease as they progress into adulthood. Source: Gut 2016.

Celiac.com 02/03/2020 - Celiac disease is a common autoimmune condition that can have negative physical and psycho-social consequences in kids with the disease. A team of researchers recently set out to document health-related quality of life (HRQOL) in a large group of children with newly diagnosed celiac disease using the PedsQL 4.0 Generic Core Scales. They wanted to compare it against data for healthy children and children with non-celiac gastrointestinal (GI) problems using established data. The research team included Mary Shull; Tracy Ediger; Ivor Hill; and Rose Schroedl. They are variously affiliated with the Department of Gastroenterology, Hepatology, and Nutrition; the Department of Pediatric Psychology and Neuropsychology, Nationwide Children's Hospital, Columbus, OH; and the Gastroenterology, Hepatology and Nutrition Section, Children's Hospital Colorado, Aurora, CO. The team presented the PedsOL survey to 159 children with newly diagnosed celiac disease, and their parents, at either the time of diagnostic duodenoscopy, or prior to their first dietitian appointment for gluten-free diet instruction. The team calculated average parent-report and self-report PedsQL summary and sub-scale scores, then used 1-sample tests to compare to documented averages from a group of healthy children, and a group of children with non-celiac gastrointestinal symptoms. Compared to the healthy kids, those newly diagnosed celiac disease had lower Total Scores, Physical Health, Psycho-social Health, Emotional Functioning, and School Functioning on parent report with similar findings on self-report. Among kids and adolescents with celiac disease, the team found clinically significant scores in nearly 56% for School Functioning, nearly 63% for Physical Health, about 54% for Emotional Functioning, nearly 44% for Social Functioning, and 49% for Total Score. Quality of life scores were lower for kids and adolescents with newly diagnosed celiac disease than for healthy children, and more in line with QOL for patients with non-celiac GI conditions. The team points out that kids with lower QOL scores in areas like school or emotional function might be helped with early interventions, including a Section 504 plan or meeting with a psychologist or social worker. Children and adolescents with celiac disease, and non-celiac gluten sensitivity, face extra challenges with academic or emotional well-being. Catching those extra alleges early can help those kids to get the help they need to thrive. Read more in the Journal of Pediatric Gastroenterology and Nutrition

Celiac.com 02/19/2018 - It's very important that people with celiac disease maintain a gluten-free diet. Still, there has been some data to suggest that some people with celiac disease may be "hyper vigilant" in their approach to a gluten-free diet, and that such extreme vigilance can cause them stress and reduce their overall quality of life. Can a more relaxed approach improve quality of life for some people with the disease? A team of researchers recently set out to determine whether "extreme vigilance" to a strict gluten-free diet may increase symptoms such as anxiety and fatigue, and therefore, lower quality of life (QOL). The research team included Randi L. Wolf, Benjamin Lebwohl, Anne R. Lee, Patricia Zybert, Norelle R. Reilly, Jennifer Cadenhead, Chelsea Amengual, and Peter H. R. Green. They are variously affiliated with the Department of Health and Behavior Studies, Program in Nutrition, Teachers College Columbia University New York USA, the Department of Medicine, Celiac Disease Center Columbia University Medical Center, Harkness Pavilion New York, USA. The team assessed the influence of QOL with energy levels and adherence to, and knowledge about, a gluten-free diet. For their cross-sectional prospective study, the team looked at 80 teenagers and adults, all with biopsy-confirmed celiac disease, living in a major metropolitan area. They assessed QOL using celiac disease-specific metrics. The team based dietary vigilance on 24-hour recalls and an interview. They based knowledge on a food label quiz. They used open-ended questions to describe facilitators and barriers to following a gluten-free diet. Overall, extremely vigilant adults had greater knowledge, but significantly lower QOL scores than their more relaxed counterparts. Both teens and adults who reported lower energy levels had much lower overall QOL scores than those with higher energy levels. To maintain a strict gluten-free diet, hyper-vigilant celiacs were more likely to avoid eating out, to cook at home, and to use internet sites and apps. For hyper vigilant eaters, eating out was especially challenging. Being hyper-vigilant about maintaining a strict gluten-free diet can cause stress and adverse effects in both teens and adults with celiac disease. Doctors may want to look toward balancing advocacy of a gluten-free diet with promoting social and emotional well-being for celiac patients. In some cases, allowing a more relaxed approach may increase well-being and, thus, make dietary adherence easier. Obviously, people would need to tailor any relaxation in their gluten-free vigilance to make sure they weren't suffering preventable symptoms or doing themselves any harm. Source: Dig Dis Sci (2018)

I am 15 years old and was diagnosed with celiac disease almost two years ago. After many years of stomach pains and rheumatoid arthritis I was relieved to finally have an answer. Even today I still remember the shock that comes with the realization that you will never have another bite of "normal" food again. After coping with the different emotional struggles that accompany a life changing diagnosis, I still had some difficulties. Most of these had to do with my friends. Over time I have learned how to handle the awkward social encounters pertaining to my celiac disease. Here are some of the most common: Refusal: I had some friends that flat out refused to eat in front of me, in order to not make me "feel bad.". Although I am flattered that they would sacrifice something for me, this reaction made me feel uncomfortable. I feel the best way to handle this situation is to be prepared if possible. If you know that for example, your class is having a party, bring some gluten free cookies. This will help you avoid an awkward conversation as well as make you feel more comfortable and less alone. Insensitive jokes: I also found that some of my friends make rude comments about my incapability to eat their food. I urge you to remember that this is a reaction due to a combination of ignorance and not knowing what to say. I usually use humor or sarcasm to lighten the situation. If someone continues to be rude after talking to them, it gives me a hint that I probably shouldn't be friends with them. A true friends will except with or with out celiac disease. Embarrassment: When I was first diagnosed with celiac disease I was afraid to tell my friends and eat in front of them. I was really nervous about bringing my "different" food to school. My mom ended up taking me on a one on one shopping trip to find the best tasting gluten free food we could find (It was really fun.) When I faced my insecurity and ate at school, I was shocked to find that my friends loved the food. I think that because I felt so confident about the food my mom bought me, my friends were more interested in trying it. Also, just remember your friends care about you and want to help you. Carelessness: One of the largest problems I have experienced is a friend exposingme to gluten by accident. For example, a friend drinking out of my water bottle, or sticking their "glutenized" hand in my pretzel bag. Usually I see them and resolve the situation, but it is still important to talk to your friends about accidentally exposing you to gluten. Most friends are very understanding, but everyone is human and therefore makes mistakes. Baking: Soon after I was diagnosed with celiac disease, a boy asked me to the school dance by giving me a homemade gluten free pretzel. It was really sweet and I felt really bad that I couldn't eat it. Because he was not aware of cross contamination, I could not be sure he took the proper baking precautions. I someone bakes you gluten free food, politely except it but explain to them that you can't eat it. Cross contamination is not something to mess around with, and must be taken seriously. Friends will understand. Disbelief: Because of my celiac disease and arthritis I missed a lot of school this past year. I had some friends the refused to believe my reaction to gluten was actually bad. I found this problem sorted itself out over time. As a beginner I sometimes messed up my diet, and got violently sick in front of my friends. Eventually all of my peers believed me, I just needed to be patient and understanding with them. Although living with celiac disease is hard, I find that it is a part of my identity that I have learned to like. After going through embarrassing situations, my confidence has increased and my friendships have strengthened. When dealing with your friends remember to be patient and know that everyone makes mistakes. As a teenager these situations can be embarrassing, so remember that you are special and your illness is not something to be ashamed of. I can honestly say that I am proud to be gluten free!