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Celiac.com 03/28/2024 - Twenty years after an initial landmark survey, the latest update by Celiac Canada shows little has changed for hundreds of thousands of Canadians living with celiac disease. Celiac Canada reveals ongoing challenges for Canadians living with celiac disease. Living with celiac disease in Canada continues to pose significant challenges, according to the latest survey conducted by Celiac Canada. The survey, titled "State of Celiac Disease in Canada: 20 Years Later," highlights persisting issues of underdiagnosis, unaffordable gluten-free diets, and difficulties accessing safe food for individuals with celiac disease. Celiac disease, an autoimmune condition triggered by ingesting gluten found in wheat, rye, and barley, affects about one percent of the world's population. However, up to 80% of affected individuals remain undiagnosed, leading to painful symptoms and potential long-term health complications. The Survey's Key Findings: Gathered from 7,500 Canadians Living with Celiac Disease Delays in Diagnosis: Despite increased awareness of gluten-free diets, many Canadians still face significant delays in receiving a celiac disease diagnosis, with some waiting up to 10 years for proper identification of symptoms. Changing Symptoms: Neurological symptoms such as anxiety, brain fog, and headaches are becoming increasingly prevalent among individuals with celiac disease, alongside traditional gastrointestinal symptoms like bloating and diarrhea. Affordability: The high cost of gluten-free foods remains a top concern for respondents, impacting their dietary choices and financial well-being. Gluten-free products can cost up to 500% more than conventional counterparts, placing a significant financial burden on individuals with celiac disease. Risk of Unsafe Foods: Accessing safe gluten-free foods, particularly in hospitals and care homes, remains challenging for many respondents, increasing the risk of exposure to harmful gluten-containing products. Mental Health Impact: Following a gluten-free diet can contribute to feelings of frustration, isolation, and stress among individuals with celiac disease, affecting their social participation and overall well-being. To address these ongoing challenges, Celiac Canada has proposed several recommendations: Improving Diagnosis: Implementing standardized blood tests for celiac disease and developing new guidelines to enhance diagnosis rates and standards of care. Financial Relief: Introducing federal income tax claims to alleviate the financial burden of gluten-free diets, providing true financial relief for affected individuals. Ensuring Safe Foods: Requiring publicly funded health institutions to provide safe gluten-free food options and developing regulations for standardized allergen labeling in food service delivery. Regulating Food Labels: Implementing regulations to standardize the use of "gluten-free" labels on food products, ensuring accurate representation of product content. By addressing these recommendations, policymakers, healthcare professionals, and stakeholders can work together to improve the quality of life for Canadians living with celiac disease and promote greater awareness and understanding of this autoimmune condition. Read more at finance.yahoo.com
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Celiac.com 07/19/2021 - Many people with celiac disease and non-celiac gluten sensitivity claim to suffer from gluten-induced neuro-cognitive impairment (GINI), often referred to as “celiac fog,” "gluten fog,"or “brain fog,” but there have been no good studies, and so there is very little data about the rates and symptoms associated with GINI. A team of researchers recently set out to to understand the neuro-cognitive symptoms associated with gluten exposure in individuals with self-reported celiac disease and non-celiac gluten sensitivity (NCGS). For the study the team had 1,143 with people with celiac disease and 253 with NCGS participate in 9-question online survey. The survey used both forced choice and free-response to get a description of neuro-cognitive symptoms the participants experienced after gluten ingestion. The team coded free-response answers based on the Health-Related Quality of Life Instrument. Nearly nine out of 10 celiacs, and 95% of NCGS sufferers reported symptoms of GINI. In both groups, the most common words used by respondents to describe the symptoms were "difficulty concentrating," "forgetfulness," and "grogginess." Both groups shared similar timing of symptoms, including symptom onset and peak. The free responses for both groups showed that respondents most commonly referred to cognitive, physical, psychological, and overall impact on quality of life. This survey indicates that GINI is common and may be severe in both individuals with celiac disease and NCGS. The team speculates that gluten-related cognitive and physical impairment may be similar to that seen in other autoimmune conditions, such as lupus. The researchers encourage clinicians to include assessment for GINI symptoms in assessments for all celiac disease and NCGS patients. They also call for additional research which includes the development of a patient-reported outcome measure that notes the patients' perceived neurocognitive effects of gluten exposure. Read more in the Journal of Clinical Gastroenterology: May 28, 2021 This study was funded in full by Beyond Celiac. Notes: J.B.E.G.: has served as an unpaid consultant for Beyond Celiac and Takeda Pharmaceuticals and is an employee of Northeastern University. B.A.: is an employee of Northeastern University. K.N.V.: is an employee of Ultragenyx Pharmaceuticals Inc. and owns stocks and shares in Ultragenyx Pharmaceuticals Inc. J.O.F.: is an employee of Cambridge Health Alliance. K.S: is an employee of Johnson and Johnson and owns stocks and shares in Johnson and Johnson. K.A.: is an employee of Beyond Celiac. A.E.: has served as a speaker for the American Academy of Family Physicians and Pri-Med, served as Chair of the Board of Directors for Beyond Celiac and is an employee of EBSCO Inc. (publisher of Dynamed) and Reliant Medical Group. A.B.: has served as a speaker for Takeda Pharmaceutical Company, was an advisory board member for AHRQ, is an employee of Beyond Celiac and owns stocks and shares in Takeda Pharmaceutical Company, Amgen, Pfizer and Merck and Co. D.A.L.: has served as an advisory board member for Beyond Celiac, is an employee of Takeda Pharmaceuticals and owns stocks and shares in Takeda Pharmaceuticals. K.Y. declares that there is nothing to disclose. The research team included Jessica B. Edwards George, PhD; Babatunde Aideyan, MA; Kayla Yates, BS; Kristin N. Voorhees, MA; Jennifer O’Flynn, PhD; Kristen Sweet, PhD; Kate Avery, MPH; Alan Ehrlich MD; Alice Bast BS; and Daniel A. Leffler MD. They are variously affiliated with the Department of Applied Psychology, Bouvé College of Health Sciences, Northeastern University, Boston, MA; Beyond Celiac, Ambler, PA; the Department of Family Medicine and Community Health, University of Massachusetts Medical School, Worcester; Takeda, Cambridge; and the Celiac Center, Division of Gastroenterology, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, MA.
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Celiac.com 05/25/2020 - A food survey in India found that ten percent of grain-based foods labelled "gluten-free," and more than one-third of products that are "naturally gluten-free," have been found to be contaminated with gluten, with some products testing at 90 times permitted gluten levels. Gluten contamination is a serious and potentially dangerous problem for people with celiac disease, since gluten consumption by celiacs triggers an immune reaction that damages the small intestine, and can lead to serious health complications over time. For people with gluten or wheat allergies, gluten consumption can trigger serious allergic reactions, including anaphylactic shock, and potentially death. A research team at the National Institute of Nutrition (NIN) in Hyderabad, India bought 160 grain-based food products, including RTE foods, flours, grains, from regional retail shops and online grocers. They then analyzed these products for gluten content. A total of 51 products were labelled "Gluten-Free," while 109 were naturally gluten-free, and supposedly contained no added gluten, including dahl, millet, quinoa, buckwheat, oats, etc. Tests showed that many of these products labelled "Gluten-Free" contained gluten at levels above the legal limit of 20 ppm the Food Safety and Standards Authority of India (FSSAI). Other products contained gluten at levels above 200 ppm for products labelled "Low-Gluten." The team's analysis showed that nearly 40% of naturally gluten-free products and 10% of food products labelled "Gluten-Free" contained gluten levels above legally permitted limits. One of the biggest culprits was oats, with almost 85% of oat products showing gluten levels above 20ppm, and the most contaminated sample clocking in at 1,830ppm of gluten, over 90 times the permitted levels. Flours labelled "Gluten-Free" are "still risky no matter the source though - nearly 70% of the local brands, 30% of the flour mill samples and 13% of the branded samples were contaminated, likely due to cross-contamination from the usage of common collection bags, utility areas or handling procedures with wheat flour." Of the naturally gluten-free products, rice (44%), ragi (32%) and sorghum (20%) all showed significant levels of gluten contamination, as did all four samples of gram flour. By contrast, for products labelled "Gluten-Free," the biggest problem was seen in from multigrain products, with high gluten levels seen in 25% of those products. The team found no gluten contamination in branded rice, ragi or sorghum, but did find contamination in branded millets and gram flour, said principal investigator Dr Devindra. The safest products in this study turned out to be buckwheat, quinoa, pulses, millets and soy, none of which showed elevated gluten levels. Products labelled "Gluten-Free" were generally safer than those which are "naturally gluten-free." Prior studies have shown that celiac disease rates in India may be higher than 1% previously reported. In India, as in many countries, many people rely on naturally gluten-free foods to treat celiac disease and lower the financial costs of a gluten-free diet. That makes the revelations about the dangers of "naturally gluten-free" foods even more disturbing. The problem of gluten contamination in gluten-free foods is not limited to India, as Australia, Brazil, UK, and the United States have all had similar reports about gluten contamination in our otherwise gluten-free food supply chain. Contaminated products could be one reason that so many people with celiac disease, who are trying to follow a gluten-free diet, are exposed to gluten on a regular basis. Read more in Food Additives & Contaminants: Part A; Volume 37, 2020 - Issue 4
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Celiac.com 04/21/2017 - Adults who have gluten sensitivities cohabitating with non-gluten sensitive adults may have a lot of unanswered questions that need to be asked. Dramatic changes in one family member's diet can have profound effects on a household (Bacigalupe & Plocha, 2015). Numerous studies document how parents and children handle everyday living when the child has food intolerances, but very few studies focus on adults living with food sensitivities. Wouldn't you like to know how other adults with food sensitivities adapt and manage over the long haul? Questions like: Does the person with the sensitivity live in fear of cross-contamination? Does the household employ methods to ensure s/he is safe? If so, what are those methods? Do the non-sensitive members of the household feel resentment? Or have they grown weary of compliance over the long haul? How adherent is the sensitive adult? Is it worth a little risk for a little pleasure once in a while? What do these cohabitating adults do to exist gracefully? These questions will be asked in a forthcoming study (on Celiac.com), and the results will be shared with viewers/readers. Food allergies affect 15 million Americans (FARE, 2015), which means that adults with food sensitivities have gone from being rare to more commonplace as the population ages (Norling, 2012). Dietary restrictions due to disease will soon become common in many households and this can be problematic because severe dietary constraints are positively associated with diminished family social activities (Komulainen, 2010). Studies indicate that adults cohabitating, when one has food sensitivities and others do not, could potentially result in problems between members of the household creating feelings of uncertainty and potentially less adherence to the diet. Regimented dietary requirements affect the quality of life when virtually every bite of food must be scrutinized before consumption. For some households, compliance may fall on the shoulders of the person who cooks. The cook in the household, caregivers, and everyone sharing the same kitchen, must be actively involved in protecting the person with the sensitivities keeping gluten-containing crumbs off the counter, out of condiment jars, thoroughly cleaning utensils, etc. (Crowley, 2012; Bollinger, 2005; Merras-Salmino et al., 2014). Of course, those living with sensitivities know there is a lot more to staying "clean and safe." Family members who share a home with someone with pervasive food sensitivities must express empathy to ensure harmony and compliance (Komulainen, 2010). However, compliance comes with a price -- every meal must be planned and cooked using alternative ingredients to avoid accidental ingestion. This takes diligence, education and ability to accomplish meal after meal (Jackson et al., 1985) especially when allergies are to ubiquitous foods such as dairy, soy, gluten or corn. Dietary restrictions can cause misgivings on the part of the other family members, who may feel deprived of their favorite foods, compromised with recipe adaptations, or forced to unwillingly comply with the other person's diet. On the contrary, the person with food sensitivity may feel pressure not to comply with the diet in order to conform to the other adult's culinary demands. In the Jackson et al. study, forty percent of people with Celiac disease did not comply with the diet because it was too difficult (1985). The relationship between the cohabitating adults may be further complicated as trust issues develop between the sensitive adult and the cook, if the sensitive adult suspects foods that make them sick are creeping into their diet. Other food-sensitive adults report non-adherence because it is "too much trouble" and causes "social isolation" (Coulson, 2007). Non-adherence for those with sensitivities can lead to reactions, anaphylactic shock and even to death (Lee et al., 2003). Even those who do not react immediately risk long-term illness with non-compliance. In my twelve years experience working with people in this arena, I have observed that dietary adherence in the household seems to go through phases. The first phase is what I'm calling the "transition" stage when a person is newly diagnosed, and everyone in the household is learning the new rules. The second stage is the "status quo" stage where cohabitants understand, and hopefully comply. Finally, the third stage is what I'm terming as 'turbulent' when other adult household inhabitants are feeling weary of compliance, may have doubts about the other's sensitivities, or even rebel. This stage may be triggered by an event that disrupts the "status quo", such as a holiday where traditional foods are expected, and where their gluten-free substitutions may not be as satisfying to the other household members. It may be triggered when the food sensitive adult decides they may be reacting to different foods than they thought before, and want to experiment with dietary changes. Dynamics between cohabitants may become turbulent during these times. After the event, the household adjusts back to equilibrium until the next triggering event, which throws them into a different part of this phase-cycle, where they may cheerfully welcome a "transition," or react with "turbulence." This cyclical pattern seems to continue as cohabitants move in and out of phases as life-events occur. One of the goals of this survey will be to determine the validity of this cycle. I also want to test the hypothesis that a component of household compliance may also be associated with the status of the adult who has the dietary restrictions – whether the head of the home enjoys full household compliance, or if a subordinate adult must comply while others are eating the foods s/he are sensitive to. Another factor that may affect compliance is how the sensitive adult was initially diagnosed. Did a medical doctor conduct tests? Or did they read an article, and notice that they had symptoms consistent with gluten sensitivity and decide to go "gluten free?" Does the diagnostic process affect the compliance of the other adult members of the household? There are many factors that need to be assessed in order to help those of us who have food sensitivities who are living with other adults. This survey/study will focus on family interactions when dealing with dietary restrictions, with the potential to increase family member's compliance. It will seek to gain insight on the impact food restrictions for one adult has on the rest of the family. This study has social significance because family unity in the future may rely on developing constructs for compliance to address this emerging social problem. I'll collect data for this study and then share it with Celiac.com and the Journal of Gluten Sensitivity readers in order to create awareness by thoroughly examining the lifestyle of food sensitive people, shedding light on how social influences affect dietary adherence. As a PhD student at the University of Denver, and an adult with Celiac disease and a lifetime of other food allergies, living with another adult who has no food sensitivities, I know first-hand that it takes cooperation and commitment from everyone to ensure my health. I hope the study can help others improve their quality of life with the insight gained from conducting this study. I'll be launching this study on Celiac.com. Thank you to Scott Adams for allowing this study to be conducted on Celiac.com.
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Could Gluten-Free Eating Leave You Alone and Misjudged?
Jefferson Adams posted an article in Additional Concerns
Celiac.com 10/23/2018 - As if being on a gluten-free diet for medical reasons weren’t hard enough already, with it’s numerous logistical and social challenges, now comes a new study that spells out the thoughts of the general public about gluten-free dieters, and the picture it paints isn’t pretty. Nearly half of people who responded to a recent survey said that they would judge someone on a gluten-free diet as "selfish, demanding and difficult to please." Another 44 percent say that people who eat a gluten-free diet are "high maintenance," while more than 30 percent call gluten-free eaters "selfish" and 14 percent presume they must be "arrogant." When it comes to questions of dating, More than 40 percent of those surveyed would be reluctant to date someone who was gluten-free, while 10 percent of respondents feared that they would be judged poorly by their gluten-free date. The study by researchers from Western Connecticut State University is the first study of its kind. In it, researchers asked 161 adults if they would date somebody who is gluten-free. Most participants expressed reservations bout dating people on a gluten-free diet. Researchers had another group of 132 people participate in an online dating scenario in which they were told to "imagine going on a first date with an individual who discloses adhering to a gluten-free diet." Participants then rated their prospective date on factors such as perceived kindness, mood, pickiness, and femininity or masculinity. Interestingly, women on a gluten-free diet were perceived to be more feminine. Some participants claimed they would be more understanding if a person cut out gluten due to an allergy rather than just as part of a fad diet. The good news is that six percent of those surveyed view gluten-free eaters as "understanding," while three percent see them as "happy," "energetic," and "self-disciplined." Its unclear how closely the results of this particular survey reflect the sentiments of the general public, but you can read more results in the DailyMail.com.- 3 comments
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Celiac.com 09/20/2017 - A half-time report on what we've learned about each other so far in the Relational Aspects of Food Sensitivities research. The study is geared toward gaining perspective on the perceived impact one adult's food restrictions cause in a household when cohabitating with other adults. It may ultimately yield strategies to address the social and emotional impact of living with food sensitivities. It aims to provide coping strategies, solidarity and empowerment to our community. If you haven't had a chance to take the survey, unfortunately it's not too late. If you have, thank you! More about the survey will appear in the next issue and the four lucky $25 Amazon gift card winners will be announced next month as well. Here's what we've learned so far: Ninety-six percent (96%) of those who took the survey have a diagnosis that leads them to be on a gluten-free diet. Fifty-one percent (51%) have been diagnosed for 8+ years; 28% have been diagnosed between 4-7 years, 13% between 1-3 years, 5% between 7 months and 1 year, and 3% between 0-6 months. Most began eating a gluten-free diet immediately after being diagnosed. Fifty-two percent feel that the way they were diagnosed affects how seriously the other adult(s) living in the household take their dietary requirements and 23% report that the way they were diagnosed doesn't affect the behavior of the other residential adults at all. When it comes to how diagnosed, 73% were diagnosed by an MD; 12% by themselves; 5% by a Practitioner, 5% by "Other;" 3% by a Naturopath and 2% by a Nutritionist. Forty-six percent (46%) report that they check in with a medical or health professional to monitor their health/diet once a year, and 21% get checkups several times a year. Most of us get our medical, health and dietary information we implement into our lifestyle from online sources (39%), books/magazines (21%) and from the MD (17%). The other 23% who took the survey get information from TV/Media, friends, and other sources. Because of the high-quality content available on websites such as Celiac.com, 87% report they are definitely not confused as to which foods are considered to be gluten-free. Sixty-percent (62%) of the respondents' report that other adults in the household are definitely not confused as to which foods are considered to be gluten-free. Ninety-two percent (92%) of us are not confused about what constitutes a "healthy diet." Thirty-eight percent (38%) feel they eat a healthy diet all the time, 48% eat a healthy diet most of the time, 11% eat a healthy diet sometimes, and 3% never eat a healthy diet. Our diet includes gluten-free grains 83% of the time, while 17% of us are grain-free. Adult cohabitants 'almost always' follow the same dietary requirements as we do in 56% of the households, 'sometimes' in 32% and 'rarely' in 12% of the households. Fifty-seven percent (57%) of us report that we eat different foods than the other adults living in the household 'sometimes,' while 22% of us do that 'rarely' and 21% almost always eat different foods. Adults with food sensitivities in 19% of the households enjoy meals prepared by another adult most of the time, 'sometimes' in 46% and never in 36% of the homes. Sixty-seven percent (67%) of those who eat meals prepared by another adult in their household trust that the meals are safe for them to eat. Fifty-one percent (51%) of those who took the survey report that someone else in the household prepares meals for them one to five times a week while 45% report they make all of their meals themselves. Most of us (95%) never cheat on the gluten-free diet. Demographics of the Respondents Eighty-five percent (85%) of the respondents are female and 15% are male. Ninety-two (92%) are white, most (65%) live with one other adult. Thirty-four point sixty two percent (34%) have a Bachelor's degree and 23% have a Masters degree. Household income was between $75-149K for 33% of the respondents. In-Depth Interview – Phase II For those of you who answered, "yes" to the Phase II interview (the longer-term portion of the research) and haven't heard from me yet, please be patient. I'm working with some time constraints now that fall quarter classes have begun and will be contacting some of you in the coming months to schedule a time to talk.
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Survey for Gluten-Free Adults Who Live with Other Adults
Jean Duane PhD posted an article in Summer 2017 Issue
Celiac.com 08/18/2017 - In a recent issue of Journal of Gluten Sensitivity, we announced a research study/survey for adults who are 18 or older and living the "gluten-free" lifestyle in a household with other adults over 18. Click here to read the Survey Overview Article. The survey is a research study conducted by Jean Duane, PhD Student at the University of Denver. It will focus on family interactions when dealing with dietary restrictions, with the potential to increase family members' compliance. It will seek to gain insight on the perceived impact one adult's food restrictions cause in a household when cohabitating with other adults. This study has social significance because family unity in the future may rely on developing strategies for compliance to address this emerging social problem. Please consider participating in this survey if you are an adult living the gluten-free lifestyle who cohabitates with another adult who may or may not have food restrictions. Your responses will be kept confidential. The survey should take around 10 minutes to complete and a compilation of the results will be published in an upcoming issue of the Journal of Gluten Sensitivities on Celiac.com. As a "thank you" for participating in this survey, your name will be entered into a drawing. Four lucky winners will receive a $25 Amazon.com gift card. If you are interested in participating in a more in-depth interview to discuss your coping strategies, successes and struggles, you will be prompted at the end of the survey to provide contact information. Jean Duane will contact you and schedule a mutually agreeable time for the interview. To take the survey, please click here: NOTE: SURVEY CLOSED AS OF 9/18/2017.- 2 comments
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Survey of Tea Shows Limits of Gluten-Screening Procedures
Jefferson Adams posted an article in Additional Concerns
Celiac.com 09/30/2015 - In 2013, a team from the U.S. Food and Drug Administration conducted a survey of white and green teas, commercially available in the northeastern United States, for the presence of gluten in the form of undeclared wheat. The survey team included EA Garber, R Panda, and KF Shireen. They are variously affiliated with the Office of Regulatory Science, U.S. Food and Drug Administration, Center for Food Safety and Applied Nutrition, and the Office of Compliance, U.S. Food and Drug Administration, Center for Food Safety and Applied Nutrition in College Park, Maryland, USA. Initially, none of the test results show the required concurrence between the RIDASCREEN gliadin (R5) enzyme-linked immunosorbent assay (ELISA) and the Morinaga Institutes of Biological Science (MIoBS) wheat protein ELISA. So, just based on that, it would appear that none of the 20 products included in the survey tested positive for wheat, rye, barley, or gluten. Moreover, eight of the teas generated responses indicative of the presence of gluten with the RIDASCREEN gliadin (R5), AgraQuant gluten G12, and Aller-Tek (Skerritt) sandwich ELISAs. Five of the eight teas generated responses indicative of >20 ppm of gluten using the RIDASCREEN and AgraQuant ELISA test kits, and all eight had ≥ 20 ppm based on the Aller-Tek ELISA. Extracts prepared using the RIDASCREEN validated protocol and the MIoBS validated sodium dodecyl sulfate plus β-mercaptoethanol (overnight) protocol were analyzed using both test kits. The extracts prepared using the RIDASCREEN protocol tested positive for gluten with both test kits. Western blot analyses of the two sets of extracts using the R5 and MIoBS antibodies to visualize the bands revealed the presence of antigenic proteins in both sets of extracts, although the profiles and band intensities were different and inconsistent with the ELISA results. Right now, there's no need for alarm. The researchers are not saying that these types of tea contains gluten. Technically these teas are not failing a gluten test. What the researchers are saying is that there needs to be a review of gluten screening procedures and how the observation of a homologous antigenic element is defined, so that the tests are accurate and reliable. Source: J Food Prot. 2015 Jun;78(6):1237-43. doi: 10.4315/0362-028X.JFP-14-575.-
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Celiac.com 03/29/2005 - The Childrens Digestive Health and Nutrition Foundation (CDHNF) with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) announced today the findings from a survey of 200 pediatricians, family practitioners, and endocrinologists revealing the lack of understanding about celiac disease (celiac disease) in children. The survey was conducted by CDHNF in partnership with Epocrates, Inc., using the Epocrates Honors® Market Research Panel. The survey results supported the clear and urgent need to promote awareness of the individuals at risk, the associated conditions, the proper method of screening for celiac disease, and the necessary step of confirming the diagnosis with a small intestinal mucosal biopsy. Regarding the diagnosis of celiac disease, only 16% of respondents chose the most appropriate first line serological screening test for celiac disease, which is the IgA-anti-human tissue transglutaminase antibody. If the patient has positive serology for celiac disease, the majority of the survey respondents did not recognize the need to confirm the diagnosis with an intestinal biopsy before starting a gluten free diet. Up to 50% of individuals screened with an anti-gliadin antibody test may not have celiac disease at all, particularly if the person has atypical symptoms. The survey suggests that some people unnecessarily are recommended a gluten free diet, while others at risk are not being properly screened, identified and placed on a gluten free diet, said survey co-author and CDHNF Celiac Campaign Scientific Advisor Martha Dirks, MD, Sainte-Justine Hospital, University of Montreal, Canada. It is also of concern that the permanent nature of celiac disease is not emphasized by our physician respondents. Less than 65% of respondents recognized that a life-long adherence to a gluten free diet had to be maintained, added Dr. Dirks. In terms of recognizing symptoms, two thirds of the respondents felt that they were aware of at least three GI related symptoms of celiac disease and could correctly identify short stature and iron deficient anemia resistant to oral iron as manifestations of celiac disease. However, the survey also revealed there is a lack of awareness about associated conditions with celiac disease. For example, an average of 5% of people with Type I diabetes have celiac disease. However, less than 50% of respondents were aware of the association and almost 30% of respondents were against screening individuals with Type I diabetes. In addition, greater than 75% of respondents were unable to identify the condition NOT associated with celiac disease among a list of associated conditions. The level of knowledge of celiac disease is not what we like it to be. The survey illustrates that clear educational initiatives are needed to promote appropriate testing of persons at risk for celiac disease such as the recently released NASPGHAN Celiac Guidelines, NIH Consensus Conference, and our CDHNF grand rounds program, said survey co-author and CDHNF Celiac Campaign Scientific Advisor Stefano Guandalini, MD, University of Chicago. Dr. Guandalini added that an area definitely in need to be better known is that of screening for family members of patients with celiac disease. With an incidence higher than 5%, first-degree relatives must be screened for celiac disease, something that is only sporadically recommended. The survey indicates the need to provide medical professionals with as much information as possible about celiac disease. As a result, Epocrates has teamed up with CDHNF to distribute the CDHNFCD guidelines, gluten free diet guide and other educational resources to over 140,000 medical professionals via their DocAlert® messaging technology which will allow medical professionals to save the guidelines summary to their hand-held device and request additional information via e-mail. Epocrates continues to focus on patient care and safety, and our members look to us to provide the latest, most current information on drugs and diseases such as that provided through this campaign. We are pleased to support this effort to promote child health and wellness, said Kirk Loevner, Epocrates President and CEO. The NASPGHAN and CDHNF survey was conducted through the Epocrates Honors market research panel, which enables healthcare professionals to share their clinical expertise. Typically, this research consists of online surveys that take between 10 to 45 minutes to complete. Criteria to participate vary by study. In exchange for their participation, users receive an honorarium. Fifty-seven of the nations largest healthcare market research companies conduct hundreds of studies annually by accessing the industry-leading Epocrates Honors panel of more than 121,000 U.S. physicians and 254,000 allied healthcare professionals including physician assistants, nurse practitioners, RNs, dentists, pharmacists and others. About NASPGHAN and CDHNF The North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition, founded in 1972, is the only society in North America and the largest in the world, dedicated to serving the Pediatric Gastroenterology and nutrition communities. NASPGHAN was established to advance the understanding of the normal development and physiology of diseases of the gastrointestinal tract and liver in infants, children, and adolescents, and to foster the dissemination of this knowledge through scientific meetings, professional education, public education, and interaction with other organizations concerned with Pediatric Gastroenterology and nutrition. Visit our website at www.naspghan.org. The Childrens Digestive Health and Nutrition Foundation was established in 1998 by NASPGHAN. CDHNF is the leading physician source of information on pediatric gastrointestinal, liver and nutritional issues. CDHNF is dedicated to improving the care of infants, children and adolescents with digestive disorders by promoting advances in clinical care, research and education. In addition to the pediatric GERD education campaign, CDHNF also leads a campaign on Celiac Disease. Additional information on CDHNF and its campaigns can be found at www.cdhnf.org. About Epocrates, Inc. San Mateo, CA-based Epocrates is transforming the practice of medicine by providing innovative clinical tools at the point of care and deploying leading-edge technologies that enable communication. The company has built a clinical network connecting more than 1 in 4 U.S. physicians, students at every U.S. medical school and hundreds of thousands of other allied healthcare professionals with other healthcare stakeholders. Epocrates products have shown a positive impact on patient safety, health care efficiency and patient satisfaction.
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