1. © 8-2005 Food Labeling Concerns for CD/DH Mary Schluckebier, MA, Executive Director, CSA Toll Free 877-CSA-4-CSA www.csaceliacs.org

2. © 8-2005 Told At Diagnosis - Celiac Disease/DH No known threshold for evoking the IgA immune response - cumulative No fool-proof way to measure “offending” amino acid fractions in all foods Research: health complications most common in those not keeping a STRICT diet

3. © 8-2005 Told At Diagnosis - Celiac Disease/DH Eliminate all food and medications – containing – made from – derived from Wheat, Barley, Rye and at this time Oats For the remainder of your life—Be Healthy

4. © 8-2005 Celiac Patient Prescription Health maintenance is the RESPONSIBILITY OF THE PATIENT Individual patient FOOD CHOICES control the success of the treatment

5. © 8-2005 Responsibility of Patient: Design own decision-making process to maintain optimal health - no WBRO Seek information – coping techniques Adaptation of information to meet own needs

6. © 8-2005 Diet Management Guidelines Beginning Self-Management Intermediate Advanced – Three Stage Food Plan for Self-Management Jean Guest, MS RD LMNT CSA Dietitian Advisor

7. © 8-2005 Voluntary Sharing is Appreciated Resource information from food companies and retailers

8. © 8-2005 To Make an Informed Decision Source information about ingredients that may or may not contain WBRO or derivatives in Product Processing Packaging

9. © 8-2005 Information to Make Decisions Meaningful Verifiable Consistent FOOD LABEL

10. © 8-2005 No WBRO or Derivatives CROSS CONTACT PRODUCT INGREDIENTS – “Identity Preserved”; Transportation and Handling PROCESSING SYSTEM – Cleaning; Dedicated line; Dedicated Facility? PACKAGING and STORAGE – Cross contact, Coatings and Wraps? Full Disclosure

11. © 8-2005 Crops Co-mingle Cross Contact wheatoats

12. © 8-2005 Consuming Oats? CSA Survey 2005 950 Eliminate oats from diet 151 Eat oats 22 No answer 1101 Define as absence of WBRO 77 GF= WBR P. Collin, Finland 2004 Participants quit eating oats when symptoms appeared – CD 10% DH 19%

13. © 8-2005 Gluten-Free Snares Misleading – (corn and rice gluten – no problem) Gluten is technically only a prolamin of wheat FDA Dismissed Gluten-free term in 1990 – not able to regulate (Misbranding Regulations) Current measurement is not applicable to all types of products

14. © 8-2005 Ingredients from Wheat and Rye

15. © 8-2005 Ridascreen® ELISA - will not accurately detect hydrolyzed or fermented materials Gluten-Free In Processing?

16. © 8-2005 Rye Malt Extract? Package marked Gluten-Free 3,640 ppm ELISA test

17. © 8-2005 Can Confusion Be Avoided? Wheat products make a good binding agent for coatings.

18. © 8-2005 Also Found on Labels Gluten-Free? – Wheat Fiber – Certified gluten-free – Wheat Grass – Hydrolyzed Wheat Protein – NEED RESEARCH ON PRESENCE or ABSENCE OF AMINO ACID SEQUENCES

19. © 8-2005 Reasons given for Gluten-Free Label with a WBRO ingredient listed “Gluten is not present in the oats and barley because we use only the outer portion of the grain kernel that is gluten free. “Wheat fiber is certified to be gluten-free.” “We adhere to the Codex definition of gluten- free.” “It tested BLD for gliadin, so it is gluten-free.”

20. © 8-2005 2004 CSA Member Survey After WBRO

21. © 8-2005 Beyond Wheat, Barley, Rye and Oats CSA Member Survey 2005 1,200 Responses

22. © 8-2005 Gluten-Free Challenges Lack of food labeling Determining ingredient sources Finding medical personnel Avoiding cross-contamination (tied with) Traveling concerns

23. © 8-2005 Where People Buy Gluten-Free Food Health food stores Grocery stores Mail order/Internet Super stores

24. © 8-2005 Rate Immune Response Sensitivity Little/No…………………….….Highly

25. © 8-2005 When information is incomplete – what level of risk will you take? People Take Minimal Risk

26. © 8-2005 Does “gluten-free” printed on a product label influence your decision? IF …. Indicates absence of WBRO Also …. Price Past experience Reputation of the company

27. © 8-2005 Recognition Program Recognized by

28. © 8-2005 General Terms for Use of Seal The license is ONLY available for products FREE of wheat, barley, rye and oats (WBRO), and any of their derivatives, in product, processing and packaging. Companies seeking a license must provide, and CSA will consider confidential, adequate information about their internal operations including dedicated lines, control of cross contact and quality control. The companies listed in the current CSA Gluten-free Product Listing are encouraged to apply for this designation.

29. © 8-2005 Communication Agreement Reserved for the best of the best – The manufacturer of this product is pleased to be recognized by the Celiac Sprue Association ® (CSA ® ). The use of this seal on an article means that the manufacturer has agreed to adhere to CSA ’ s standards in representing this article to be “ Gluten-free, ” that is, free of any wheat, barley, rye and oats and their derivates. Visit CSA at www.csaceliacs.orgwww.csaceliacs.org or call toll free 877-272-4272.

30. © 8-2005 References: CSA Member Survey 2004, Celiac Sprue Association, Summary Reports to Membership CSA Member Survey 2005, Celiac Sprue Association, Summary Reports to Membership Diet Management -Three Stage Food Plan – CSA Brochures 2000-2005 Jean Guest, MS RD LMNT Peräaho M, Collin P, Kaukinen K, Kekkonen L, Miettinen S, Mäki M. Oats can diversify a gluten-free diet in celiac disease and dermatitis herpetiformis. J Am Diet Assoc 2004;104:1148-50. Murray JA, Watson T, Clearman B, Mitros F, Links Effect of a gluten-free diet on gastrointestinal symptoms in celiac disease. Am J Clin Nutr. 2004 Apr;79(4):669-73. Murray JA, Watson T, Clearman B, Mitros, Murray JA, Van Dyke C, Plevak MF, Dierkhising RA, Zinsmeister AR, Melton LJ 3 rd. Trends in the identification and clinical features of celiac disease in a North American community, 1950-2001.Clin Gastroenterology Hematology. 2003 Jan;1(1):19-27. Murray JA, Van Dyke C, Plevak MF, Dierkhising RA, Zinsmeister AR, Melton LJ