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  • Scott Adams
    Scott Adams

    URGENT: Volunteers Who Have Celiac Sprue: Research Subjects Needed

    Celiac.com 03/19/2002 - For the past several years, Gary M. Gray, M.D. and Chaitan Khosla, Ph.D., both at Stanford University, have been studying the underlying causes of Celiac Disease, with an eye toward finding a therapeutic solution that would not require the strict adherence to a gluten-free diet. For the past two years, I have helped organize the Celiac conference at Stanford University; and we have collected blood from Celiac volunteers for their research. Based on a series of studies involving animal tissue, Drs. Gray, Khosla, and coworkers have developed a hypothesis for the cause of the disease. Their findings in animal studies need to be confirmed on human tissue, and any differences in normal and Celiac intestine must be defined. The Stanford researchers are now in need of volunteers who are scheduled for a follow-up biopsy as part of their optimal care to provide intestinal tissue samples. Volunteers must be biopsy-diagnosed Celiacs who, as part of their care, will be undergoing an upper gastrointestinal endoscopy for recovery of small biopsies from the duodenum. For this research, two small (a few milligrams) of additional tissue will be taken during the biopsy, frozen immediately, and transported to Stanford. Please note that volunteers undergoing procedures at locations other than Stanford Hospital could participate. The small amount of additional tissue does not constitute a significant additional risk over and above that you will undergo due to the endoscopy and routine biopsies for the pathologist to examine. The research has been approved by the Human Subjects Committee at Stanford University Medical Center.

    If you would like to participate in this study, please contact Kelly Rohlfs at 650-725-4771 or kellyr@bonair.stanford.edu.If you have questions concerning the risks and benefits of this study, please contact Dr. Gray at 650-725-3366 or gray@stanford.edu. Dr. Gray will coordinate the study with your gastroenterologist at the time of your endoscopy.



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  • About Me

    In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

  • Related Articles

    Scott Adams
    Below is in excerpt from THE SPRUE-NIK PRESS which was sent out on Thursday, 7 Dec 1995 as an Automatic distribution (AFD) of the file CELIAC SPRUENIK. If you would like to get this excellent celiac resource, contact Mike Jones at mjones@digital.net
    Note that the endomysial test he used correlates well with a damaged mucosa. Less severe forms of gluten intolerance would have an even higher incidence. - Don Wiss
    Dr. Fasano, from the University of Maryland School of Medicine, began the meeting with some interesting data on celiac research:
    Over the past 30 years there have been 6,276 papers published on celiac disease and only 10 of these were from the USA.
    In an effort to quantify the number of celiacs in the USA Dr. Fasano took his own money and purchased 2000 blood samples from the Red Cross. He screened each of the blood samples for celiac disease using the endomysial antibody test. Eight of these samples tested positive. This indicates a potential ratio of 1/250 people in the USA with celiac disease or with the genetic potential to develop celiac disease. If this ratio were to hold true for the entire USA population, it would mean there are over one million celiacs in this country. Remember this is one small study, using samples from the Baltimore area. The point is, we need more studies such as this, using a larger sample size derived from multiple areas around the country, to get a reliable estimate of the incidence of celiac disease in this country.
    For more information on the incidence of celiac disease see the Research Data On Celiac Disease page.

    Jefferson Adams
    Celiac.com 02/20/2012 - The U.S. Food and Drug Administration (FDA) is gathering information on drug ingredients derived from wheat, rye or barley, to help people with celiac disease make better-informed decisions when buying drugs and other health products.
    Specifically, the FDA is asking pharmaceutical companies for information about any ingredients derived from wheat, rye or barley, that are used to make U.S. products.
    Additionally, the FDA is seeking information about the prevalence of such ingredients, processing steps taken or possible to remove gluten, and any current gluten testing practices.
    The FDA is also seeking to understand exactly how crucial ingredients derived from wheat, rye and barley are to the production of any given drug that may contain them, and to press for possible substitutes.
    Lastly, the FDA wants to make certain that people with gluten sensitivities get complete information when receiving drugs in a clinical setting.
    Overall, the FDA seems to be making certain that the known allergens in wheat, rye and barley are getting proper attention from drug manufacturers.
    Stay tuned for the results, and for information on how these FDA actions impact gluten-free issues regarding drugs, health and medical products in the future.
    Source:

    http://www.in-pharmatechnologist.com/Materials-Formulation/FDA-researching-gluten-in-drugs-to-help-celiac-disease-patients

    Jefferson Adams
    Celiac.com 06/21/2013 - Caroline, a third-grader at St. Pius school in Chicago her mother, Cassandra, both have celiac disease.
    After being formally diagnosed at the Celiac Disease Center at the University of Chicago, they each received care package that contained "…lots of gluten free foods, as well as tons of literature about eating gluten free,” said Cassandra. “Caroline’s care package had a stuffed animal in it," she added.
    The university's care package program is funded solely by donations, and this knowledge, along with Caroline's appreciation, led to a desire to support the Celiac Disease Center.
    Cassandra credits Caroline with a plan to make and sell pony tail holders with ribbons. Caroline made the holders herself, and sold them for $4.00 each, collecting over one hundred dollars in the process.
    Caroline specifically "wanted the money to be used to send another little girl or boy a care package and stuffed animal,” said Cassandra.
    Caroline proudly announced her efforts and presented the money at her at her annual appointment with Dr. Stefano Guandalini, founder of the University of Chicago Celiac Disease Center.
    Dr. Guandalini was "so appreciative and proud of her efforts,” beamed Cassandra. “His kind words to her made our day, and Caroline left feeling great about giving back!”
    Principal Daniel Flaherty called Caroline a "…great example for all of us here at St. Pius X Parish School.”
    Source:
    http://www.chicagotribune.com/news/local/suburbs/lombard_villa_park/community/chi-ugc-article-st-pius-x-third-grader-inspired-to-give-2013-04-26,0,5389721.story

    Jefferson Adams
    Celiac.com 09/20/2013 - New technologies and ingredients are helping manufacturers to improve the look, taste and nutritional profile of gluten-free food products, a market that is expected to grow to $6 billion by 2017, according to a presentation at the 2013 Institute of Food Technologists (IFT) Annual Meeting & Food Expo in Chicago.
    In addition to growing numbers of people with celiac disease, and gluten sensitivity, much of the demand is being driven by people with preference for gluten-free foods, said Chris Thomas, senior food technologist at Ingredion, Inc.
    Manufacturers of gluten-free foods have historically focused on the 'gluten-free' aspects of their products.
    This approach as resulted in gluten-free products which are gritty, or dry in texture and have a short shelf life. To mask these negative features, or to enhance bland flavor, many gluten-free products contain high amounts of sugar and offer little nutritional value.
    That is changing rapidly. "Now, consumers want nutrition quality, variety and appearance," says Thomas.
    Consumer demand and new manufacturing approaches, including the development and use of flours, starches and bran made from alternative ingredients, are leading to gluten-free products with better texture, flavor and nutritional profiles than in the past.
    By using native functional tapioca and rice-based flours, manufacturers of gluten-free foods are eliminating grittiness and crumbliness, and crafting products with texture, color and appearance that is similar to wheat-containing counterparts.
    The resulting gluten-free products are also similar to wheat-based products in term of calories, fat content, overall nutrition and shelf life.
    One huge advance toward better gluten-free food products comes from the commercial use of pulses. These are the edible seeds of leguminous crops, such as peas, lentils, chickpeas and edible beans, which have a high viscosity, as well as high levels of protein, fiber and other nutrients. They are being used to create flour and starch-like substances for better gluten-free products.
    So far, pulses have been used to create a number of gluten-free pastas, baked goods, snacks, breadcrumb substitutes, and even milk-like beverages in the international food market, says Mehmet Tulbek, Ph.D, the global director of the research, development and innovation division of Alliance Grain Traders (AGT).
    All of these developments, coupled with strong market growth, mean that consumers of gluten-free foods can look forward to more and better gluten-free products coming very soon.
    Source:
    http://medicalxpress.com/news/2013-07-technologies-ingredients-options-gluten-free.html

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