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I just found a really old thread about Seattle having some practitioners with celiac disease knowledge. Who is still in Seattle that would be recommended? Or more preferably closer to Spokane if at all possible? I live in MT and was told by my kids' pedi that they don't need to be tested, there's no symptoms. And the GI office I went to for a second opinion (due to a disagreement with my spouse) just told me there was no additional testing etc. needing to be done. Thanks for your time!
Celiac.com 05/26/2015 - If recent reports are any indication, the University of Washington's PR team might be getting ahead of the facts with claims that the university research team is close to developing a cure for celiac disease. Numerous articles are claiming that UW researchers are working to develop an enzyme-laden pill that would break down gluten in the stomach, thus permitting people with celiac disease to eat wheat. Hence, the 'cure' idea. The enzyme, it is said, would break it apart into amino acids that could be absorbed with no risk of adverse reaction for people with celiac disease. Well, an enzyme that breaks down gluten is not necessarily the same thing as a 'cure' for celiac disease. Ingrid Swanson Pultz, who leads the research project describes the substance as a protein that people with celiac disease will consume orally. The team is looking to begin FDA mandated tests and human trials will sometime in the next two years. The drug "really stands to make an impact on people's lives," Pultz said. However, UW is not the only institution working on drugs to treat celiac disease. There are several drug treatments in progress. It's unclear at present, and will remain unclear until the human trial phase whether the enzyme will permit safe gluten consumption by people with celiac disease, or whether it would permit limited gluten consumption within certain parameters. In fact, given the numerous products currently under development for celiac disease treatment, and hoping to see release in the next few years, we're likely to hear many claims, much hypes, and plenty of marketing and PR flash. Until we actually have a product that works safely and effectively, it seems that any claims regarding a cure for celiac disease are largely overblown PR smoke. That means you, University of Washington. Source: http://www.komonews.com/news/health/UW-Researchers-developing-cure-for-celiac-disease-302653671.html
Celiac.com 08/24/2011 - By all accounts, the first ever D.C. Gluten-free Expo, which recently wrapped up, was a success for sponsors, vendors and consumers of gluten-free foods. The event attracted more than 60 vendors of gluten-free products ranging from pizza, breads and baked goods to cereals, specialty mixes, and other prepared foods. More than 600 people attended the exhibit hall at the Embassy Suites Convention Center in downtown D.C. The hall was packed with gluten-free products, many offered up for tasting. Expo proceeds from the $10 public admission price, and the $75 “Globally Gluten-Free” cocktail reception at Finn & Porter afterward, helped to raise more than $20,000 for expo host and sponsor, The Celiac Disease Program at Children’s National Medical Center. The reception boasted a fine gluten-free spread, including a selection of gluten-free pastas, along with Bready brand breads. An equally generous Mexican selection offered corn tortillas and a wide range of vegetables, and was complemented by a selection of lamb and chicken skewers, hummus, and a sweet potato mash. The next D.C. Gluten-free Expo is scheduled for June 15, 2012.
Summary prepared by Nancy Kloberdanz as a joint effort of all the national celiac organizations GIG, CDF, CSA/USA, and ACS. Celiac organizations and patients from several states recently attended two very important educational lobbying efforts in Washington DC. The Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF), American Celiac Society (ACS), and Celiac Sprue Association/United States of America (CSA/USA) were formally represented, and were advocates for the Digestive Disease National Coalition (DDNC) and National Institute for Arthritis, Musculoskeletal and Skin Diseases (NIAMS). Our goals in lobbying were twofold. First to encourage the Senators and Representatives we visited to support a 16.5 % increase in the Budget for NIH (National Institutes of Health) and to provide $405 million to NIAMS in fiscal year 2001. This money is important in efforts to double the NIH budget by 2003. NIH is the major funding organization for research that is supported by government grants. Often research that may not seem directly linked to celiac disease and dermatitis herpetiformis, is beneficial to our disease and others. A good example is the Genome Project. Genetic mapping will help researchers refine their research and hopefully speed efforts to find causes and cures for diseases. The second goal was to increase awareness and educate about our particular disease. We accomplished this very well. On March 19, 2001, celiac disease had the largest patient representative group at the DDNC, and reached nearly 20 representatives. Members of DDNC and NIH were very impressed by our representation of celiac disease. The following week we had 3 representatives attend the NIAMS Advocacy efforts. While visiting our Congress people we had the opportunity to tell our stories and explain how legislative decisions impact us individually, as well as share some facts about celiac disease/DH. Fact Sheets and other materials were left in each congressional office that we visited. DDNC represents many gastrointestinal disease organizations. We are pleased that all the national celiac organizations are members of this coalition. NIAMS and CPA-SDR (Coalition of Patient Advocates for Skin Disease Research) are the coalition groups that the Gluten Intolerance Group (GIG) is a member of, in order to represent persons with dermatitis herpetiformis. Work by coalitions such as these is very important. These coalitions are strong forces with great influence in the medical areas they represent. Patient advocacy work is important, however, you should also know that nonprofit groups (501c3) are severely limited by law in the amount of funding that can go toward advocacy work. In this regard we need your help, please: Write to your Congress people about your disease and encourage them to support the NIH budget increase. Send them copies of the Fact Sheet. Visit them when they are at home (usually weekends and Mondays). Join the national celiac organizations in representing a united, common voice. We are strongest when we speak as one. The more voices saying the same thing the better. Let your national group(s) know you want to participate in these activities. The Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF), American Celiac Society (ACS), and Celiac Sprue Association/United States of America(CSA/USA) were formally represented. DDNC and NIAMS groups are often invited to participate in advocacy work throughout the year. Plan to come to Washington DC next year. Often Congress people are very busy and sometimes selective in whom they see. They want to hear from their constituents. An example was a Senator from California who wanted to see constituents from her district. If there had not been a representative from California on a team, that senator would not have heard about Celiac Disease. We need representatives from as many states as possible. Although, our lobbying efforts are at the mercy of the Congress schedule, these events often take place in March or April. Offer to testify. Testifying before Budget and Health Committees is by written invitation only. First we must write letters asking permission to testify and then wait to be approved. It is a wonderful experience to express our story in this manner. Children and people severely affected by the disease are the most influential.