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Public Meeting on Gluten-Free Food Labeling - Text Version of PowerPoint Presentation by Mary Schluckebier

Public Meeting: Gluten-Free Labeling main page


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

copyright 8-2005

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

    • containing
    • 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

  • Intermediate

  • Advanced

  • 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

  • Product

  • Processing

  • Packaging

Slide 9 - Information to Make Decisions


  • Meaningful

  • Verifiable

  • Consistent

photo - elephant with caption "How many legs does this elephant have?"

Slide 10 - No WBRO or Derivatives

Full Disclosure



    • “Identity Preserved”; Transportation and Handling

    • Cleaning; Dedicated line; Dedicated Facility?

    • 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

  • 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

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

  • Gluten-Free?

    • Wheat Fiber Certified gluten-free
    • Wheat Grass
    • Hydrolyzed Wheat Protein

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.”

Slide 20

2004 CSA Member Survey

photo - bar graphs displaying survey data

Slide 21 - Beyond Wheat, Barley, Rye and Oats

CSA Member Survey 2005
1,200 Responses

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?

IF ….

  • Indicates absence of WBRO

Also ….

  • Price

  • 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.