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Celiac.com 02/21/2014 - Doctors in India made a bit of a splash recently by using music to help raise awareness about celiac disease, which is rarely-discussed, and under-diagnosed in that country. The group, representing numerous areas of medical specialization, met to raise awareness about the disease, especially among their medical peers. Nearly 10 million (1 per cent of India's population) suffer from celiac disease, and very few cases are properly diagnosed. Organized by The Celiac Society of Delhi at India Habitat Centre, the event featured doctors speaking about celiac disease and the importance of making a correct diagnosis. To make sure their message got across, they included a musical performance. The diagnosis and management of celiac disease in India is, at present, poor, says Celiac Society founder and president Ishi Khosla, adding that "…cases are often mistaken for irritable bowel syndrome, Crohn's disease, tuberculosis or a form of auto-immune disorder." People with undiagnosed celiac disease have a much higher risk of getting life-threatening maladies later on in life. In addition to featuring music and talks, the conference also played host to guest of honor C.K. Mishra, additional secretary to the Union Ministry of Health and Family Welfare. Source: Express News Service: New Delhi, Sun Dec 15 2013
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Celiac.com 04/13/2012 - There is a disease that affects one in every hundred Americans and causes physical and mental agony yet once it’s diagnosed, it can be easily treated with a change in diet and without the administration of drugs. You maybe haven’t even heard of it. You would think that the sufferers of this disease would be rather lucky to have such an easy treatment option available to them, right? As a matter of fact, it turns out that this disease—celiac, or coeliac, disease—may be easy to treat, but it’s very difficult for doctors to diagnose, and for the very reason that doctors haven’t heard of it either. It’s estimated that three out of every hundred of the people with celiac disease has been diagnosed. Only three out of every hundred! So why is it that most celiacs suffer without diagnosis? Low awareness in this country means low awareness in the medical community about this disease. If you’re like most Americans, you probably haven’t even heard about it before you read this article. With celiac disease, a component of wheat, barley, and rye, called gluten, causes an immune reaction that attacks the intestine and can affect the entire body. Another reason for difficulty in diagnosing celiac disease is the fact that doctors usually miss the diagnosis because they don't realize how variable the disease can be. There are numerous gluten intolerance symptoms. People with celiac disease aren’t able to properly absorb essential nutrients because the villi, the absorptive fingers in the small intestine, have been damaged or destroyed. Other symptoms and problems caused by this autoimmune disease include diarrhea, fatigue, abdominal pain, bloating, gas, distention, weight loss, constipation, irritable bowel syndrome, vomiting, short stature, iron deficiency with or without anemia, failure to thrive in infancy, poor performance in school, delayed puberty, infertility, recurrent miscarriage, elevated liver enzymes, Down syndrome, Sjogren's syndrome, canker sores, arthritis, depression, osteoporosis, vitamin deficiencies, tooth discoloration and dental enamel defects, skin disorders, autism, nerve and balance problems, irritability in children, seizures, and migraines. Additionally, there seems to be a slightly increased risk of lymphomas and gastrointestinal cancers. Many symptoms of celiac disease look like many other diseases, sicknesses, etc so it is very deceiving. Doctors don't think of celiac disease, as it isn’t stressed in medical school or doctors are taught that the symptoms of the disease are always dramatic, which isn’t true. Doctors are, however, becoming more aware of the disease. However, it takes an average of four or more years before the correct diagnosis of celiac disease is made in the very small percentage who are correctly diagnosed at all. Celiac disease is easy to test for. Simple blood tests detect the disease over ninety percent of the time. The diagnosis is then confirmed by an upper endoscopy; a small, flexible tube is slipped into the mouth of the sedated patient, down his esophagus and stomach and into the first part of the small intestine, called the duodenum, where biopsies are taken and then examined for changes seen in celiac disease. Even simpler than testing for diagnosis is the treatment of the disease—a gluten-free diet. It is challenging and requires a lifestyle change, but with more and more gluten-free substitutes and gluten-free recipes available, adopting a gluten-free diet and gluten free cooking is easier than ever. There's research into developing a pill that would help people with celiac disease, as well. A few years ago I had many painful symptoms and bouncing from doctor to doctor with no diagnosis. I finally happen to fall into the hands of a doctor who very much knew about celiac disease and tested me for it. It took a lot of time and determination, and most people aren’t able to devote themselves to this degree. It’s really not right that millions of people are suffering from this disease with no diagnosis. A disease that can treated so easily yet the diagnosis for which is so elusive, when simply educating doctors in its symptoms would bring these people such relief. While efforts are surely being made to get the U.S. government to fund research and to raise awareness for this disease, there are some things you can do yourself besides just writing your representatives, which I highly suggest you do. If you were to send out this article to a hundred people or speak to the same number of people about this subject, chances are, you would come across a sufferer of celiac disease and you would change that person’s life. Better yet, post it on a blog or forward it to friends and have them forward it themselves. In this way, you may be able to contact many more than a hundred people. The increased awareness will lead to increase relief.
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Celiac.com 10/24/2011 - Shannon Ford, of Miami, Florida has been crowned Mrs. United States 2011. Mrs. Ford received the crown from 2010 winner Rachel Juillerat. The award is particularly noteworthy for people with celiac disease and gluten intolerance. Two years ago, Ford was diagnosed with celiac disease, and she now maintains a gluten-free diet. Contestants for Mrs. United States are judged on personality, charitable commitment, evening gown and swimsuit, a judges’ interview and dramatic final live question. In her new role as Mrs. United States, Ford will make appearances across the country, charity events and speaking engagements. By promoting her platform, “1 in 133 – Raising Awareness for Celiac Disease," Ford also hopes to increase celiac disease awareness and to advocate for better labeling of our nation’s food supply. Of her new title, Ford says: “Being Mrs. United States is a huge responsibility. I’m excited to get back to Florida and get to work.” She is scheduled to begin make appearances across the nation, with her first stop being a benefit luncheon for the Easter Seals. Mrs. Ford earned her B.A. in Psychology from Florida International University. She currently works as a human resources manager for major wealth management company. She also serves as a Miami Dolphins ambassador, chosen from former Dolphin cheerleaders to represent the organization and advocate community service. Ford married her husband Ray after dating him for 15 years. They are both avid runners, and Shannon Ford has competed in numerous half and full marathons. Source: Open Original Shared Link
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Gene From Father May Raise Celiac Disease Risk in Daughters
Jefferson Adams posted an article in Latest Research
Celiac.com 04/09/2008 - Do your chances of developing celiac disease vary depending on which parent is passing on the genes? A new study says yes. According to the results of a recent study, depending on whether the gene is inherited from the father or the mother, and depending on the gender of the child, data suggest that there could be some variance in rates at which the gene is inherited, along with some variance in the rates of celiac disease. An Italian research team set out to examine risk differences for developing celiac disease between males and females. The research team was made up of Francesca Megiorni, B.Sc., Barbara Mora, B.Sc., Margherita Bonamico, M.D., Maria Barbato, M.D., Monica Montuori, M.D., Franca Viola, M.D., Simonetta Trabace, B.Sc., and Maria C. Mazzilli, B.Sc. HLA typing in celiac disease is mainly considered for its negative predictive value, as people who do not carry the DQ predisposing molecules are unlikely to develop the disease. Celiac disease occurs twice as often in women as it does in men. In order to learn more about why this might be, the team of researchers recently performed genotyping for HLA-DRB1, DQA1, and DQB1 loci on 281 female and 156 male pediatric celiac patients, 292 nuclear families, and 551 controls. The team then evaluated and compared the odds ratio, parental origin of the disease-associated haplotypes, and transmission ratio distortion between male and female patients. Female patients more frequently exhibited DQ2/DQ8 compared to male patients (94% F, 85% M; P = 1.6 Å~ 10−3). The HLA typing test carried a calculated negative predictive value of 99.1% for females and 90.5% for men. Interestingly, the bulk of the 39 DQ2/DQ8 negative cases were male. Looking at the origins of the DQ2 haplotype, the research team noted that 61% of female patients and 42% of male patients carried a paternal combination (P = 0.02). Looking at the results of the transmission disequilibrium test (TDT) the team noted a major distortion in the DR3-DQ2 transmission from fathers to daughters. Among those patients that are DQ2/DQ8 positive, females showed a higher prevalence of celiac disease than did male patients, with a ratio of 1.8 to 1. Of those patients that were DQ2/DQ8 negative there was a slight tip toward the males, with a ratio of .7 to 1. The high prevalence of celiac disease in DQ2/DQ8 positive females only applied to females that had inherited the DQ2 haplotype from the father. The results of the study indicate that the sex of the parent supplying the HLA genes may play a role in susceptibility to celiac disease, along with a different effect of parent-specific epigenetic modifications in the two genders. In all, male patients developed celiac disease more frequently than female patients in absence of HLA predisposing dimmers, but this was due to the occurrence of two DQB1 susceptible alleles that seem to increase the disease risk for males. The results lead the research team to believe that the presence of DQ2 and/or DQ8 molecules is a stronger risk factor in females than in males (ORF = 40.5, ORM = 14.1). Additionally, the results also indicate that HLA typing, which is mainly considered for its negative predictive value in celiac disease, is of greater importance in the testing of females than in males, with calculated negative predictive value of 99.1% and 90.5%, respectively, which points to the need to factor gender into the calculation of disease risk. These findings, taken together with the revelation that inheritance of a paternal DQ2 haplotype led to celiac predominance in daughters, show that HLA genes play a role in the disease sex bias, and imply a potentially different effect of parent-speciï¬c epigenetic modiï¬cations in the two genders. Am J Gastroenterol 2007; 102:1–7- 10 comments
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Celiac.com 12/06/2005 - Alek Komarnitsky from Lafayette, CO (USA) has had thousands of Christmas lights on his house for the enjoyment of friends and neighbors since 2000. In 2002, he added a webcam and webcontrol, so people on the Internet could not only view his lights, but turn them on & off and see the results on their computer screen via the Christmas webcam. It got increasingly popular each year, and in 2004, a media frenzy erupted over it and the story went around the world on the Internet, in print, on radio, and on TV - one of the more entertaining segments was when Denver ABC-7 took him up in their helicopter for a live report on the 6:00 News of the blinking lights. There was only one problem - it was all a fun little Christmas hoax. The lights were real, but a sequence of still images were used to provide the illusion that people were changing them. Aleks wife was changing the lights when the chopper was overhead, but the rest of the time they never changed! Concerned that his prank had gotten out of hand, Alek approached the Wall Street Journal to fess up and High Tech Holiday Light Display Draws Everyone But the Skeptics revealed the hoax after Christmas. Needless to say, the media howled over this change of events, and another round of international publicity ensued as people around the world got a good post-holiday chuckle. For 2005, Alek suggests a headline of High Tech Holiday Display Says Bring on the Skeptics! With improved technology available, he has three (real) ChristmasCams (three more than last year!) providing real-time views of his 26,000 Christmas Lights. And using X10 power line control technology, people on the Internet really can them on and off this year. He adds Ill be sure to have it operational on Christmas Eve so web surfers can look for Santa, but realistically, I doubt well get a picture of Rudolph landing on my roof .... but HEY, you never know! Aleks children - Dirk and Kyle While www.komar.org has always been free to Internet surfers around the world, Alek encourages those people who enjoy the Christmas lights show to consider making a direct contribution to the CFCR. Aleks two sons have celiac disease, so this cause is important to him. Individuals and companies that donate are listed on the high traffic web site for Christmas lights fans around the world to see. And in keeping with Aleks whimsical nature, he has donated the Christmas Lights Webcam that Fooled the World to the CFCR. There actually was a webcam last year, since as the media showed up at his house in droves, he figured he should put something up in the tree across the street to make it look like there was one. So he a cobbled together a contraption of a Christmas slide projector ($10), a half a roll of duct tape ($2), and ended up fooling the world - PRICELESS! The CFCR plans to have an eBay auction in December of this well constructed piece of history - again, 100% of proceeds for Celiac Research. So for those that missed out on the $28,000 Virgin Mary French Toast, get ready for the eBay auction of the The Christmas Lights Webcam that Fooled the World. Make a donation at the University of Marylands Center for Celiac Disease Research And be sure to say For Christmas Lights when make your donation.
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