1. Aramark Dietetic Internship Erika Stahl

2. Title: Celiac Disease and the Gluten-Free Diet: The Need for Registered Dietitians with Certified Expertise Emerging Trends Research Project

3.  Celiac Disease (CD)  autoimmune disease  affects the small intestine  1 to 3% of the general population has CD  ingestion of gluten  inflammation Introduction

4.  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 About Gluten

5.  Gluten  inflammation  epithelium and lamina propria of the small intestine become infiltrated with lymphocytes  crypt hyperplasia and atrophy of the intestinal villi What Gluten Does

6.  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 Symptoms of Celiac Disease

7.  Gluten-free diet  Difficult because GLUTEN IS EVERYWHERE!  Bread, crackers, pretzels, cereal, pasta, soy sauce, beer, soup, etc…  Cross contamination is a big issue Rx: Gluten-Free Diet!

8.  When first diagnosed celiac patients are often  angry  in denial  frustrated  have anxiety  depressed  overwhelmed and confused! Emotions

9.  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 Dietitians and Celiac Disease

10.  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

11.  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 Team Approach

12.  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 Nutrition Expert?

13.  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??? Specializations

14.  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? Objective

15.  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 Methodology

16.  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 Celiac & Gluten Intolerant Survey Results

17.  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

19.  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%) Results Continued

20.  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 RD Survey Results

21.  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

23.  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 Results Continued

25.  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

26.  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 Discussion Continued

27.  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

28.  Better off increasing CD education  undergraduate programs  dietetic internships Ensuring future dietitians are all equipped to work with celiac patients Conclusion Continued

29. Questions?

30. References 1.Niewinski MM. Advances in celiac disease and gluten-free diet. J Am Diet Assoc. 2008; 108: 661-672. 2.Garcia-Manzanares A, Lucendo AJ. Nutritional and dietary aspects of celiac disease. American Society for Parenteral and Enteral Nutrition. 2011; 26(2): 163-173. 3.Celiac Disease Symptoms. Celiac Disease Foundation Web site. http://www.celiac.org. Accessed November 29 th, 2012. 4.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. 5.Case S. The gluten-free diet: How to provide effective education and resources. Gastroenterology. 2005; 128: S128- S134. 6.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. 7.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. 8.Commission on Dietetic Registration Web site. http://www.cdrnet.org. Accessed November 28 th, 2012. 9.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.