Food Labeling Concerns for CD/DH Mary Schluckebier, MA, Executive Director, CSA

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

2. 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. 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. Celiac Patient Prescription • Health maintenance is the RESPONSIBILITY OF THE PATIENT • Individual patient FOOD CHOICEScontrol the success of the treatment

5. 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. Diet Management Guidelines • Beginning Self-Management • Intermediate • Advanced • Three Stage Food Plan for Self-Management • Jean Guest, MS RD LMNT • CSA Dietitian Advisor

7. Voluntary Sharing is Appreciated • Resource information from food companies and retailers

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

9. FOOD LABEL Information to Make Decisions • Meaningful • Verifiable • Consistent

10. Full Disclosure 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?

11. Cross Contact Crops Co-mingle wheat oats

12. 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. 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. Ingredients from Wheat and Rye

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

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

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

18. 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. 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. 2004 CSA Member Survey Women After WBRO Dairy Issue Tops List Milk of greatest concern Over 45 Some College +

21. 6 or more 5 4 0 3 2 1 Beyond Wheat, Barley, Rye and OatsCSA Member Survey 2005 1,200 Responses

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

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

24. Rate Immune Response Sensitivity Little/No…………………….….Highly

25. When information is incomplete – what level of risk will you take? People Take Minimal Risk Never take a risk

26. 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. Recognized by Recognition Program

28. 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. 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.org or call toll free 877-272-4272. Communication Agreement Reserved for the best of the best –

30. 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, Van Dyke C, Plevak MF, Dierkhising RA, Zinsmeister AR, Melton LJ 3rd. 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.