Food Labeling Concerns for CD DH Mary Schluckebier MA

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

Told At Diagnosis - Celiac Disease/DH l l l No known threshold for evoking the Ig. A 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 © 8 -2005

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

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

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

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

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

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

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

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

Cross Contact Crops Co-mingle wheat © 8 -2005 oats

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

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

Ingredients from Wheat and Rye © 8 -2005

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

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

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

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

Reasons given for Gluten-Free Label with a WBRO ingredient listed l l “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 glutenfree. ” “It tested BLD for gliadin, so it is gluten-free. ” © 8 -2005

2004 CSA Member Survey After WBRO © 8 -2005

Beyond Wheat, Barley, Rye and Oats CSA Member Survey 2005 © 8 -2005 1,

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

Where People Buy Gluten-Free Food Health food stores l Grocery stores l Mail order/Internet

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

When information is incomplete – what level of risk will you take? People Take

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

Recognition Program Recognized by © 8 -2005

General Terms for Use of Seal l 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. © 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. org or call toll free 877 -272 -4272. © 8 -2005

References: l CSA Member Survey 2004, Celiac Sprue Association, Summary Reports to Membership l CSA Member Survey 2005, Celiac Sprue Association, Summary Reports to Membership l Diet Management -Three Stage Food Plan – CSA Brochures 2000 -2005 Jean Guest, MS RD LMNT l 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. l 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. l 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. © 8 -2005