© 8-2005

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

Toll Free 877-CSA-4-CSA www.csaceliacs.org

© 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

© 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

© 8-2005

Celiac Patient Prescription

Health maintenance is the RESPONSIBILITY OF THE PATIENT

Individual patient FOOD CHOICES control the success of the treatment

© 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

© 8-2005

Diet Management Guidelines

Beginning Self-Management IntermediateAdvanced

– Three Stage Food Plan for Self-Management Jean Guest, MS RD LMNT CSA Dietitian Advisor

© 8-2005

Voluntary Sharing is Appreciated

Resource information from food companies and retailers

© 8-2005

To Make an Informed Decision

Source information about ingredients that may or may not contain WBRO or derivatives in

Product Processing Packaging

© 8-2005

Information to Make Decisions

•Meaningful

•Verifiable

•Consistent

FOOD LABEL

© 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

© 8-2005

Crops Co-mingleCross Contact

wheat oats

© 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%

© 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

© 8-2005

Ingredients from Wheat and Rye

© 8-2005

Ridascreen® ELISA - will not accurately detect hydrolyzed or fermented materials

Gluten-Free In Processing?

© 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

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

“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.”

© 8-2005

2004 CSA Member Survey

After WBRO

© 8-2005

Beyond Wheat, Barley, Rye and OatsCSA Member Survey 2005 1,200 Responses

Number of other sensitivies listed

1

2

3

4

5

6

7

© 8-2005

Gluten-Free Challenges

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 Grocery storesMail order/InternetSuper stores

© 8-2005

Rate Immune ResponseImmune Response

0

200

400

600

800

1000

1200

1 2 3 4 5 6 7

Sensitivity

Num

ber o

f Res

pons

es

Consuming foods

Medications consumed

Skin contact form medications

Skin contact from hair products

Skin contact from detergent

Skin contact from lotions andsoaps

Sensitivity

Little/No…………………….….Highly

© 8-2005

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

People Take Minimal Risk

0

200

400

600

800

1000

1200

1 2 3 4 5 6 7

At home

At restaurants

At homes of friends andrelativesOn special occasions

© 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

© 8-2005

Recognition Program

Recognized by

© 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.

© 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.orgor call toll free 877-272-4272.

© 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, 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.