The Lunch Tray and Beyond: Challenges and Solutions for Gluten-Free Kids Alice Bast, NFCA President

Gabriela Pacheco, RDN, LD, SNS

CSNA”s 61st Annual Conference November xx, 2013 Palm Springs, CA

Learning Objectives

• Discuss the needs of students with celiac disease and challenges in school setting.

• Review the role of diet prescription in school setting.

• Identify steps you can take to maximize well-being.

Who is the NFCA?

• National Foundation for Celiac Awareness (NFCA)

• 501(c)(3) non-profit organization

• Drives diagnoses

• Improves quality of life

• Four strategies: Education, Empowerment, Advocacy, Advancing Research

Snapshot of Current Terminology • Gluten-Related Disorders: • All conditions related to gluten, including:

• Gluten ataxia

• Non-celiac gluten sensitivity

• Celiac disease1

• Some researchers also include wheat allergy2

1. Ludvigsson et al, 2012 2. Sapone et al, 2012

Gluten-Related Disorders • Celiac disease:

– Chronic, small intestinal immune-mediated enteropathy – 1 in 133 Americans; 83% undiagnosed (or misdiagnosed)

• Non-celiac gluten sensitivity: – Similar symptoms, but different bodily response – Prevalence unknown – 6%?

• Wheat Allergy – Adverse immunologic reaction to wheat proteins – 0.4% in the U.S.

Symptoms: Beyond the GI Tract • Gas

• Bloating

• Diarrhea

• Constipation

• Irritability

• Joint pain

• Anemia

• Weight loss

• Weight gain

• Delayed growth

• Small stature

• Delayed menarche

• Dental enamel defects

Treatment • Strict, lifelong gluten-free diet

What is gluten? • The complex of water

insoluble proteins from wheat, barley, rye and their derivatives.

• Also found in: • Spelt • Triticale

Common Sources of Gluten

Overlooked Sources of Gluten • Couscous

• Soy sauce

• Marinades and salad dressing

• Licorice

• Imitation meat and seafood

• Veggie burgers

• Seasoned rice mixes

• Soups and broths

• Barley malt, malt flavoring

• And more!

Read the Label Popular kids licorice

Ingredients:

CORN SYRUP; ENRICHED WHEAT FLOUR (FLOUR, NIACIN, FERROUS SULFATE, THIAMIN MONONITRATE, RIBOFLAVIN, AND FOLIC ACID); SUGAR; CONTAINS 2% OR LESS OF: PALM OIL; GLYCERYL MONOSTEARATE; SALT; CORNSTARCH; GLYCERIN; NATURAL AND ARTIFICIAL FLAVOR ; CITRIC ACID; POTASSIUM SORBATE (PRESERVATIVE); ARTIFICIAL COLOR ( RED 40)

FDA Gluten-Free Labeling Rule • Finalized August 2013

• Enforcement begins August 5, 2013 – No gluten-containing grains – Less than 20 parts per million (ppm) of gluten – Labeling is voluntary – Naturally gluten-free foods can label as “gluten-free”

• Gluten-free certification can ensure product is meeting FDA standards

More information: www.CeliacCentral.org/FDA

20 Parts Per Million

• How much is that? – 20 milligrams in one kilogram

• What does that look like? – Less than one drop of milk in a gallon

Cross-Contamination vs. Cross-Contact • You say “Tomato”…

– Know your target audience

• Cross-Contamination = Bacteria – Example: Salmonella on cutting board – But… Some consumers use this term for gluten

• Cross-Contact = Particles or allergens – Example: Bread crumbs in a toaster – But… Consumers are not familiar with term

Major Sources of Gluten in School Setting • Pizza

• Sandwiches

• Hot dogs/hamburgers

• Chicken fingers

• Salads with croutons

• Macaroni and cheese

• Spaghetti and other pasta

• Wraps/tortillas

• Deli meats

• Fried foods

• Cookies and cupcakes

• Condiments

Challenges with the School Setting • In the Lunchroom

– Prep areas, serving stations – Shared equipment (fryers) and utensils – Shared condiments – Trading foods among students – Allergen-free tables – double-edged sword

• Sports Teams – Pizza party

Challenges with the School Setting • In the Classroom

– Birthday parties, holidays and snack time – Breakfast in the Classroom

• Classroom desks • Other students bringing outside foods • Teacher awareness and sensitivity

• Arts & Crafts – Play-Doh©

– Pasta/macaroni, Cheerios, Fruit Loops – Finger paints and glue

Challenges with the School Setting • Home Economics

– Cakes, pasta, airborne flour – Should student participate?

• Field Trips, Overnight Trips, etc. – Bag lunch vs. restaurant meal – Travel snacks and treats – Overnight trips – What can student eat? – Staying home vs. missing out

It’s not just about the food!

• Social isolation

• Bullying

• Anxiety

• Academics

Gluten-Free Alternatives • Gluten-free foods = available and tasty

– Bread – Pizza – Pasta – Chicken nuggets – Crackers

• Individually-packaged

• Parents often contribute samples

– Tacos – Pretzels – Gummy snacks – Cookies and cupcakes – Ice cream cones – Corn tortillas and wraps

Sample School Lunch Menu

Comprehensive Approach • Successful nutrition management requires teamwork

• New challenges; new rewards

• Feelings matter, too

• Eating should be: – Positive – Safe – Secure

What does this mean for you? • Understand importance of medically necessary diet

• Role of school administration and staff – Nurse – Principal – Teachers – Bus driver (field trips) – Custodian (keep tables clean & sanitized)

• Role of Foodservice Directors – Cafeteria staff training: First line of defense!

Federal Regulations - USDA • Section 504 – Rehabilitation Act of 1973

• Individuals with Disabilities Education Act (IDEA)

• Individualized Education Program (IEP) – Written statement – Cornerstone of educational and related services – Can include nutrition plan – Developed with the team

Source: http://www.fns.usda.gov/cnd/Guidance/accomodation_children

Individuals with Disability Education Act (IDEA)

“Schools must make substitutions in foods in the reimbursable meal for students who are disabled

and whose disability restricts their diet.”

Source: IDEA 7 CFR Part 15b www.fns.usda.gov/cnd/Guidance/accomodation_children

Individuals with Disability Education Act (IDEA) • Accommodations must be made

• No extra charge

• Disability determination made by: – Licensed physician – Physician assistant – Nurse practitioner (as specified by state agency)

• Registered dietitian or licensed nutritionist: – Cannot determine a disability – Can sign prescription for dietary accommodations (as specified by

their agency)

Federal Regulations: IDEA vs. 504

• IDEA

• Disability

• Special education needed

• IEP completed

• Accommodations made

• Section 504

• Disability

• Special education not needed

• 504 plan completed

• Accommodations made

What is an IEP? • Individualized Education Program

• Written statement for child with disability – School must meet nutrition components – May supplement with statement on nutritional needs

• Children with celiac disease and special education needs

• Field trips, gym class and recess – Discuss at IEP meeting or 504 plan

IEP or 504 Meeting – Team Effort • Foodservice Director (FSD)

• Registered Dietitian (RD) – School – Community

• School Nurse

• Principal

• Parents

• Student

• Others involved in care

New Guidance Related to ADA Amendments Act The ADAAA broadened the list of “Major Life Activities” for purposes of identifying individuals with disabilities who may not have been previously identified, and added a new category under it:

“Major Bodily Functions”, 42 USC 12102(2)(B).

Source: SP 36-2013, CACFP 10-2013, S Amendments Act FSP 12-2013

New Guidance Related to ADA Amendments Act • Major Life Activities

– Caring for oneself – Seeing – Hearing – Eating – “Major Bodily Functions”

• Functions of the immune system • Digestive • Neurological

Source: Memo SP 36-2013 http://www.fns.usda.gov/cnd/guidance/special_dietary_needs.pdf

The Diet Prescription • Necessary prior to meeting • Includes

– What the disability is – How it restricts the diet – Major life activity affected** – Foods to be omitted and/or substituted – Signature of licensed physician or medical authority

• Examples available online – Download from state Office of Education

** USDA updated definitions and added new category

Source: http://www.fns.usda.gov/cnd/guidance/special_dietary_needs.pdf

Sample Diet Prescription

Source: Gabriela Pacheco, RDN, LD, SNS and Albuquerque Public Schools

Sample Medical Statement

Source: District School Board of Pasco County

Authorized Licensed Medical Authority • Medical doctor

• Physician assistant

• Nurse practitioner

• Registered dietitian*

• Licensed nutritionist*

*Only if child does not have a disability. Check with your state agency.

The Diet Prescription • Send to FSD or RD

– NOT directly to cafeteria staff

• Keep copy in: – Cafeteria, Nurse’s office…

• Does not have to be updated every year Note: – Transfer to new school – Change in dietary needs or preferences – Children with celiac disease

• Only treatment is life long gluten-free diet – would not have a change • Not a choice!

The Diet Prescription • Can never be revised or changed

– Even if food not available – Possible liability issues – Only medical authority can revise

• Plan ahead – What situations, i.e. field trips, may arise?

Substitutions – Follow as Prescribed • Inappropriate substitutions can result in:

– Cross-contamination/cross-contact – Adverse reactions

• Do not serve if… – Not on prescription – Label is unclear

• Always have safe foods available for child - RTEs

Responsibilities of School Administrators

• Know the process

• Help families understand requirements

• Include school nutrition staff

• Be aware of risks: liability and negligence

Legal Concerns & Liability

“Schools which do not make appropriate program accommodations for children with disabilities,

could be found in violation of Federal civil rights laws.”

Source: USDA Food and Nutrition Service: Accommodating Children with Special Dietary Needs http://www.fns.usda.gov/cnd/Guidance/

Next Steps Now, what is your action in responding?

Steps to Success: Education • Foodservice Director: Attend parent-student lunch

• Medical Provider: Invite an expert to school

• Librarian/Teacher: Stock books in the library

Steps to Success: Education • Teachers and Students:

– Celiac Awareness Day/Gluten-Free Day – Personal Stories – Books

• Nick and the Shrinking Inner Spaceship • The Gluten Glitch

Steps to Success: Training

• Foodservice Manager: Make a pledge

• Foodservice Staff: Serve gluten-free menu

• Nurse, Dietitian, Class Project: – Post “allergen smarts” bulletin board – Examples of meals made allergen-free

Training: Read Labels! • Read every label, every time

• When in doubt, ask! – Supervisor – Manufacturer

• Choose certified gluten-free products

Steps to Success: Communication • Dietitian, Foodservice Director:

– Add special dietary section to website

• Students: – Share stories in class

• Foodservice Director: – Speak one-on-one at parent-student lunch

• Foodservice Director, Students/Parents: – Establish connection and dialogue – Get feedback!

Communications: Cafeteria Staff • Discuss:

– Menus – A la carte/vending machines – Recipes – Food handling practices – Cleaning practices

• Keep original food labels

• Understand disability laws

Student’s Responsibilities • Often aware of symptoms

• Can learn about their diet

• Be diligent about ALL foods – Not just the cafeteria – Proper hand washing

• Communicate with teacher, nurse and other students

• Identify bullies

Thank You!

Questions? Comments?

We want to hear from you! Alice Bast, President, NFCA abast@celiaccentral.org

Gabriela Pacheco, RDN, LD, SNS, School Nutrition Consultant gabrielanutrition@gmail.com

National Foundation for Celiac Awareness (NFCA)

Facebook.com/nfceliacawareness

@CeliacAwareness

Pinterest.com/CeliacCentral

Resources NFCA - www.CeliacCentral.org

Kids Central - www.CeliacCentral.org/Kids

Gluten-Free in College - www.CeliacCentral.org/college

GREAT Kitchens training – www.CeliacCentral.org/GREAT

Gluten-Free Labeling – www.CeliacCentral.org/FDA

Primary Care CME - www.CeliacCMECentral.com

Product Reviews - www.GlutenFreeHotProducts.com

Resources American Academy of Allergy, Asthma & Immunology www.aaaai.org

Food & Drug Administration’s Center for Food Safety & Applied Nutrition www.cfsan.fda.gov/~dms/wh-alrgy.html

Food and Nutrition Information Center www.nal.usda.gov/fnic

United States Department of Agriculture www.fns.usda.gov/cnd/guidance/default.htm

Resources Academy of Nutrition and Dietetics www.eatright.org

School Nutrition Association www.schoolnutrition.org

The University of Mississippi’s National Food Service Management Institute www.nfsmi.org

National Dissemination Center for Children with Disabilities www.nichy.org