Slide 1 - Food Labeling Concerns for CD/DH
Mary Schluckebier, MA, Executive Director, CSA
photo - Celiac Sprue Association logo
Toll Free 877-CSA-4-CSA
Slide 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
Slide 3 - Told At Diagnosis - Celiac Disease/DH
- Eliminate all food and medications
- made from
- derived from
- Wheat, Barley, Rye and at this time Oats
- For the remainder of your life—Be Healthy
Slide 4 - Celiac Patient Prescription
- Health maintenance is the RESPONSIBILITY OF THE PATIENT
- Individual patient FOOD CHOICES control the success of the treatment
Slide 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
Slide 6 - Diet Management Guidelines
- Beginning Self-Management
Three Stage Food Plan for Self-Management
- Jean Guest, MS RD LMNT
- CSA Dietitian Advisor
Slide 7 - Voluntary Sharing is Appreciated
- Resource information from food companies and retailers
photo - The CSA Gluten-Free Product listing manual
Slide 8 - To Make an Informed Decision
- Source information about ingredients that may or may not contain WBRO or derivatives in
Slide 9 - Information to Make Decisions
photo - elephant with caption "How many legs does this elephant have?"
Slide 10 - 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?
Slide 11 - Crops Co-mingle
photo - wheat field and oat field indicating cross contact
Slide 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%
Slide 13 - Gluten-Free Snares
- (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
Slide 14 - Ingredients from Wheat and Rye
photo - Brown Gravy mix packaging
Slide 15 - Gluten-Free In Processing?
Ridascreen® ELISA - will not accurately detect hydrolyzed or fermented materials
photo - Brown Gravy Package with arrow pointing to "Gluten Removed / ELISA tested"
Slide 16 - Rye Malt Extract?
photo - Brown Gravy Mix package with "rye malt extract" from the ingredients list circled
Package marked Gluten-Free
3,640 ppm ELISA test
Slide 17 - Can Confusion Be Avoided?
photo - Candied Walnuts with "wheat starch" circled from the ingredients list
Wheat Starch in Unexpected Places
Wheat products make a good binding agent for coatings.
Slide 18 - Also Found on Labels
- Wheat Fiber Certified gluten-free
- Wheat Grass
- Hydrolyzed Wheat Protein
- NEED RESEARCH ON PRESENCE or ABSENCE OF AMINO ACID SEQUENCES
Slide 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.”
2004 CSA Member Survey
photo - bar graphs displaying survey data
Slide 21 - Beyond Wheat, Barley, Rye and Oats
CSA Member Survey 2005
photo - pie chart displaying data
Slide 22 - Gluten-Free Challenges
- Lack of food labeling
- Determining ingredient sources
- Finding medical personnel
- Avoiding cross-contamination
- (tied with) Traveling concerns
Slide 23 - Where People Buy Gluten-Free Food
- Health food stores
- Grocery stores
- Mail order/Internet
- Super stores
Slide 24 - Rate Immune Response
photo - bar graph displaying immune response data
Slide 25 - When information is incomplete - what level of risk will you take?
photo - bar graph displaying risk data
Slide 26 - Does “gluten-free” printed on a product label influence your decision?
- Indicates absence of WBRO
- Past experience
- Reputation of the company
Slide 27 - Recognition Program
photo - "Recognized by Celiac Sprue Association" logo
Slide 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.
Slide 29 - Communication Agreement
Reserved for the best of the best –
photo - CSA manufacturer recognition logo
Slide 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.