Kids learn to handle celiac disease
One theory about autism is that it may start in the gut, because some children with the disorder also suffer from gastrointestinal problems . Many are put on strict gluten-free diets in the hopes that avoiding wheat proteins will improve their behavior. “Studies have not really shown that this works, but it is a common belief,” said Dr. Daniel Coury, chief of developmental- behavioral pediatrics at Nationwide Children’s Hospital in Columbus, Ohio. The new study, which was published online Sept. 25 in the journal JAMA Psychiatry, offers the most definitive proof yet that many autistic kids don’t benefit from restrictive, wheat-free diets. The study comes from Sweden, a country that keeps careful records on the health of its citizens. Sweden also has rates of celiac disease that are about twice as high as in the United States, said study author Dr. Joseph Murray, a celiac disease specialist at the Mayo Clinic in Rochester, Minn. Researchers pulled the health records on almost 290,000 people who’d had intestinal biopsies. Intestinal biopsies are tests where doctors take a tissue sample of the small intestine and examine it under the microscope to look for signs of damage. Intestinal biopsies are considered to be the most reliable way to check for celiac disease. Based on the biopsy results, about 27,000 of those people had full-blown celiac disease.
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Katrina Nordyke will address this topic as she defends her thesis at Umea University on November 15. Celiac disease is a chronic disease attributable to genetic susceptibility which causes damage to the small intestine by the intake of gluten in the diet. It is estimated that between 1 and 3 percent of the population have the disease, but the number of unreported cases is high and most sufferers go undiagnosed. Sweden has higher rates of coeliac disease than the rest of the western world. The benefits of screening for celiac disease in the general population is controversial and the consequences of being diagnosed when screening has been unclear. Sweden has had an epidemic of celiac disease. Therefore, researchers at Umea University conducted the population-based research project ETICS, Exploring the Iceberg of Celiacs in Sweden, to investigate issues arising with celiac disease and screening for the disease. All sixth graders in five regions in Sweden were invited to participate in the study during 2005/2006 and 2009/2010. In her thesis, Katrina Nordyke examines the experiences and results of screening to detect celiac disease in these children. She notes that the results are ambiguous. “Most kids can handle the concerns of the screening examination and thoughts about the disease may present. However, there was no consensus that the detection of disease and treatment results in an increased health-related quality of life.”, says Katrina Nordyke. The children involved in ETICS wrote short stories where they described their screening experience before they received their screening results. The stories show that some children experienced the fear and anxiety, but as a whole they managed the screening well. The kids also filled out surveys about their health-related quality of life at the time of the screening and one year after diagnosis. Finally, those who received a celiac diagnosis from the screening wrote new stories one and five years after diagnosis.
Research paper highlights experiences, results of celiac disease screening in young children
Afterward, students were given permission to, well, consume their work. As the kids dug in, Eli, 11, was the odd man out. He has celiac disease, so those foods were not safe for him. He had to sit there and watch, said his mother, Alison Waldman of Arlington, Va. Eli came home that day and was just devastated. Stories like Elis are common among children with celiac disease. The disorder, which affects about one in 100 American adults and children, is defined by an immune reaction to gluten, a protein found in bread, pasta, pizza crust, cookies, crackers and many other foods containing wheat, barley or rye. Gluten, which often serves as a binder, is even present in many ice creams, sauces and salad dressings, as well as in some lip balm and vitamins. The immune reaction causes an inflammation in the small intestine, which can lead to a host of problems: abdominal pain, small intestine damage, muscle cramps, fatigue, weight loss and stunted growth. Left untreated, celiac disease may also trigger nervous system diseases and reproductive problems. Childrens National Medical Center follows about 200 children with celiac disease and saw 40 to 50 new cases last year, said John Snyder, chief of gastroenterology, hepatology and nutrition there. There is no medication for celiac disease. The treatment is lifelong avoidance of all foods that contain gluten, which can be hard enough for adults; for children with birthday celebrations, school functions, sleepovers and play dates, the regimen poses inordinate challenges. Oftentimes, kids who are diagnosed with celiac disease feel that they are the only ones out there, said Aaron Rakow, a clinical psychologist and director of psychological services in the gastrointestinal division at the medical center. That feeling of isolation is a major risk, both in terms of leading to feelings of depression and to anxiety disorders. Addressing such risks was an impetus behind the hospitals launch this spring of a celiac disease support group for elementary-school children. A teen group will be organized later this year.
i was reading this http://www.journalgazette.net/article/20131008/FEAT/310089991/1011/FEAT