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Celiac Disease Awareness Low According to Pediatric Gastroenterologist Survey Results

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 (CD) 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 CD, only 16% of respondents chose the most appropriate first line serological screening test for CD, 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.

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The survey indicates the need to provide medical professionals with as much information as possible about CD. 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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1 Response:

 
Tee Jenkins
Rating: ratingfullratingfullratingfullratingfullratingfull Unrated
said this on
26 Nov 2007 6:30:05 PM PDT
This is very disturbing news. I will bring this to the attention of the GI that my child has to see tomorrow.




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Cycling Lady, LMAO at IBeStumped! So true. Yes, he is trying the band aid approach it seems. That's probably the most frustrating thing of all. So yesterday I get a call back from his office and they say to stop taking the Viberzi and switch back to Imodium! I reminded them that Imodium didn't work, I had already used it 8 days with no changes. His assistant informed me that that is all he can recommend at this time until he sees me at my next appointment which is 5/24! I live near Chicago and I am about to make an appointment to go to the University of Chicago hospital which is the top celiac research hospital in the country. Hopefully they can give me better answers.

7Hi jen and welcome No-one can diagnose remotely via nterwe posts but if there was such a game as celiac / gluten sensitive bingo, I would be calling 'House!' having read your account above... Lots of things fit the pattern as I'm sure your lurking has revealed. It's a tricky condition to diagnose however so you may have a little wait before you join the coolest club in town and get your funky celiac membership card For now it's really important that you stay on gluten. Keep eating it as accurate testing requires it. Ask your doctor to check the boxes for celiac testing alongside your liver blood tests. There should be enough in your history to get this without hassle but if they're reluctant INSIST and don't be afraid to assert your reasonable suspicion and wish to clarify and exclude. A good liver specialis will be aware of the possible links so you should be ok. If not gt second opinion. Ask for a full celiac panel as there are variety of tests. Find further info here There's a lot to take in, but be positive, I think you are on the right track and if so, you could soon be feeling better than you ever thought possible!

Hello, I am in a job that I travel every 3rd week...It gets challenging becuase many times I am doing audits of warehouses and they dont even have a cafeteria. I usually bring gluten-free protein bars as a back up if I have to miss a meal and then eat when I get back to the hotel. Just a suggestion because they certainly fill me up....Have a safe trip...Kelly

Hello all, I'm a new member here but have lurked for a while. I'm looking for some advice regarding my medical history, possible symptoms of celiac and next steps. General info: female, low level smoker, drink alcohol, aged 32. I started having bad gastro issues when I was around 17. Since then I've consistently suffered from chronic diarrhoea, frequent discomfort in the tummy area, feelings of dehydration despite drinking at least eight glasses a day and frequent fatigue for no real reason. In 2008/9 I visited the doctor as my diarrhoea was having an effect on my studies at the time. The doctor tested me for allergies; eggs, fish, gluten and lactose and did a "standard" blood test. Everything came back fine except my liver results, which were elevated to double (I did not the see the results for myself so can't say which enzymes etc). I was told to drink less and take Imodium. The doctor implied that perhaps I was stressed and / or anxious and, still being young plus a student who regularly went out drinking, I accepted this advice and carried on with my life. I would here add that I am not an unusually stressed person - in fact, learning to deal with my unpredictable bowels has forced me to be quite a laid-back person! Fast forward to 2016. I had been living with my partner for two years by this point who had noticed my bowel habits and informed me that this was definitely not normal. He encouraged me to try out a gluten free diet since I was apprehensive about visiting a doctor only to be fobbed off with Imodium again. I did the diet as strictly as a newbie can for around two months before we set off travelling. During the diet I noticed that after a couple of weeks of extreme tiredness I felt quite a lot better - I kept a food journal at the time which showed that I almost immediately had diarrhoea once after eating an ice-cream, i felt bloated and unwell after an attempt to make oat muffins (maybe i didn't cook them very well though!) and I felt bloated and had diarrhoea after eating some fish fried in flour (We made a mistake in ordering them but I didn't want to complain). My partner also reported that my mood swings (which I admit can be a little unpredictable) were much better. Once we started travelling I gave up and ate what I was given as we were staying with friends etc much of the time. Toward the end of our trip I started to feel extremely tired, to the point of having to stay in for "rest" days, and my guts were very unhappy. I chalked it up to irregular eating patterns, too many beers and late nights in general. During the trip I also had an extreme hangover after drinking wheat beer. And, while of course I accept that any overindulgence can make you ill, I really felt that that level of hangover was quite out of the ordinary. Finally, I developed a strange lump under my armpit during this period. Now back at home, I decided to go to the doc and check out the odd lump under my armpit. The doctor was pretty confident that it was nothing to worry about cancer-wise but she ordered a battery of blood tests just to be sure. The lump is fine (good news) but the results showed elevated GGT, high-ish ALT and normal AST liver enzymes plus signs of dehydration in red bloods / higher (but not concerning) levels of white bloods. I'm scheduled to go back for another blood test to double-check liver function and discuss results - if it is again high she will send me for a ultrasound. Does this history chime with anyone here? I know that the correct course in basic health terms is to stop drinking for some time (easily done) and stop smoking forever (easy to say...) but I cannot help but think that something else is going on here. I will discuss this with my doctor and make clear that my bowel issues have not been resolved and that the initial IBS diagnosis wasn't based on any thorough testing so to speak. In the meantime - does anyone have any advice for me in times of avenues to research or experience of similar symptoms? Gluten remains in my diet but in all other respects it could be regarded as very healthy, I think anyway... (pescatarian, plenty of fruit and veg, little to no sugar on a daily basis, not much dairy to speak of...) Thanks in advance and sorry for bending everyone's' ear about this... I guess it's just taken a long time for me to admit I might be sick and I need some help. Jen

Wish I could give you a hug. Unfortunately I know how that feels with Neurologists, Internists, Endocrinologists, Rheumatologists, GIs..... I got so tired of crying my drive home after refusing yet another script for Prozac. I do hope your GI can give you some answers even if it is just to rule out other possible issues. Keep on the gluten and we are here for you.