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Aramark Dietetic Internship. Erika Stahl. Emerging Trends Research Project. Title: Celiac Disease and the Gluten-Free Diet: The Need for Registered Dietitians with Certified Expertise. Introduction. Celiac Disease (CD) autoimmune disease affects the small intestine
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Aramark Dietetic Internship Erika Stahl
Emerging Trends Research Project Title: Celiac Disease and the Gluten-Free Diet: The Need for Registered Dietitians with Certified Expertise
Introduction • Celiac Disease (CD) • autoimmune disease • affects the small intestine • 1 to 3% of the general population has CD • ingestion of gluten inflammation
About Gluten • Gluten • protein found in wheat, barley, rye • oats are contaminated with gluten • the alcohol-soluble fraction is what causes reactions • gliadin=wheat • hordein=barley • secalin=rye
What Gluten Does • Gluten inflammation epithelium and lamina propria of the small intestine become infiltrated with lymphocytescrypt hyperplasia and atrophy of the intestinal villi
Symptoms of Celiac Disease • Consequences • decreased ability to absorb nutrients • vitamin and mineral deficiencies • malnutrition • abdominal cramping • distention and bloating of the stomach • intestinal gas • chronic diarrhea or constipation (sometimes both) • steatorrhea • migraine headaches
Rx: Gluten-Free Diet! • Gluten-free diet • Difficult because GLUTEN IS EVERYWHERE! • Bread, crackers, pretzels, cereal, pasta, soy sauce, beer, soup, etc… • Cross contamination is a big issue
Emotions • When first diagnosed celiac patients are often • angry • in denial • frustrated • have anxiety • depressed • overwhelmed and confused!
Dietitians and Celiac Disease • Registered Dietitians (RD’s) • Highly skilled trained nutrition professionals • Celiac disease is managed by a strict gluten-free diet alone thus making the dietitian ESSENTIAL! • Be prepared to have in-depth nutrition assessments, educational sessions and ready to answer multiple questions
Boston- 2007 prospective study • Assessed level of dietary adherence to a gluten free diet • Results: the presence of additional food intolerances greatly affected adherence • 87.9% of participants who were declared to have “excellent” to “good” adherence to the gluten-free diet had additional food intolerances
Team Approach • Physicians should refer celiac patients to a registered dietitian, especially if newly diagnosed • Dietitians should give feedback to the physician • 49% of physicians find feedback from the dietitian useful • Unfortunately 41% reported that they rarely received any detailed feedback or recommendations from the dietitian
Nutrition Expert? • A 2001 study of celiac patients found that 54% who had seen a dietitian did not find the dietitian knowledgeable or helpful • Celiac patients need definitive answers to their questions • Helpful if the RD knows which items taste best
Specializations • Commission on Dietetic Registration (CDR) offers various different specializations • geriatrics, sports nutrition, pediatrics, renal nutrition, oncology, etc • require RD status for greater than 2 years and approximately 2000 hours of practice experience Future: Celiac Disease specialization???
Objective • To determine: • if registered dietitians have sufficient knowledge of celiac disease in order to effectively work with this population • Is more education needed? Would a specialization in celiac disease be better suited to meet the needs of patients?
Methodology • 2 electronic surveys via survey monkey • Survey 1 – Registered Dietitian Survey • Sent out via Aramark email • Survey 2- Celiac and Gluten Intolerant Survey • Sent out using LISTSERV@listserv.icors.org
Celiac & Gluten Intolerant Survey Results • Celiac Survey- 586 surveys completed • 91.3% (535 participants) were celiac patients and the remaining 8.7% (51 participants) were gluten intolerant • Majority- female (86.3%, 506 women) • 94.2% (552 participants) reported following a gluten-free diet 100% of the time
Results Continued • The survey found that many of those in need of information about a gluten-free diet obtained the majority of their information from books, internet websites, and local or online support groups. • Only 31.9% used information provided by an RD.
Results Continued • Participants stated that they knew more about the gluten-free diet after doing research on their own than the RD did and/or that the RD provided them outdated or incorrect information. • When asked about the information provided by the RD: • 69 out of 300 participants reported the information was not useful (23%) • 119 as somewhat useful (40%) • 112 as very useful (37%)
RD Survey Results • Dietitian Survey- 140 surveys completed • Primarily clinical dietitians (77.1%, 108 participants) • Majority of respondents have 0 to 5 years of experience (55%) • 19.3% with 6 to 10 years of experience
Results Continued • Dietitians were asked to rate their confidence level when working with celiac or gluten intolerant patients using a scale of 1 to 10. • Mode and median= 7
Results Continued • Dietitians had difficulty: • Identifying sources of gluten other than the obvious- wheat, rye and barley • Ex. Triticale- a hybrid grain made from wheat and rye • Identifying conditions which are commonly associated with celiac disease • Ex. Dermatitis herpetiformis
Discussion As dietitians are the experts in nutrition, a survey of dietitians regarding a disease that’s only treatment is medical nutrition therapy scores ideally should have been near perfect. Additional education and/or specialization would be useful to provide better care to patients.
Discussion Continued • Physicians are also in need of further education of the gluten-free diet • ~30% of the gluten-free survey participants stated that they felt their physician was not knowledgeable regarding the gluten-free diet • ~ 20% reported that their physician didn’t explain as to why a gluten-free diet was necessary as a form of treatment
Conclusion • The majority of the dietitians polled worked with celiac patients ≤4 per month • It would take a considerably long time for dietitians to obtain enough practice hours for a specialization in CD • Would dietitians want to specialize in CD?
Conclusion Continued • Better off increasing CD education • undergraduate programs • dietetic internships Ensuring future dietitians are all equipped to work with celiac patients
References • Niewinski MM. Advances in celiac disease and gluten-free diet. J Am Diet Assoc. 2008; 108: 661-672. • Garcia-Manzanares A, Lucendo AJ. Nutritional and dietary aspects of celiac disease. American Society for Parenteral and Enteral Nutrition. 2011; 26(2): 163-173. • Celiac Disease Symptoms. Celiac Disease Foundation Web site. http://www.celiac.org. Accessed November 29th, 2012. • Marcason W. Is there evidence to support the claim that a gluten-free diet should be used for weight loss?. J Am Diet Assoc. 2011; 111(11): 1786. • Case S. The gluten-free diet: How to provide effective education and resources. Gastroenterology. 2005; 128: S128-S134. • Leffler DA, Edwards George JB, Dennis M, Cook EF, Schuppan D, Kelly CP. A prospective comparative study of five measures of gluten-free diet adherence in adults with coeliac disease. Alimentary Pharmacology Therapeutics. 2007; 26: 1227-1235. • Shemesh A, Endevelt R, Monnickendam SM. Importance of nutritional assessment and collaboration between physicians and registered dietitians in detecting celiac disease: Two case studies. J Am Diet Assoc. 2009; 109(8): 1445-1448. • Commission on Dietetic Registration Web site. http://www.cdrnet.org. Accessed November 28th, 2012. • Brody RA, Byham-Gray L, Touger-Decker R, Passannante MR, O’Sullivan Maillet J. Identifying components of advanced-level clinical nutrition practice: A Delphi study. Journal of the Academy of Nutrition and Dietetics. 2012; 112(6): 859-869.