©2013 NATIONAL FOUNDATION FOR CELIAC AWARENESS
The Lunch Tray and Beyond:Challenges and Solutions for Gluten‐Free Kids
Sunday, July 14, 2013 | 1:15 p.m.Alice Bast, NFCA Founder and President
Gabriela Pacheco, RDN, LD, SNS, School Nutrition Consultant
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©2013 NATIONAL FOUNDATION FOR CELIAC AWARENESS
Learning Objectives
①Discuss the needs of students with celiac disease and challenges in school setting.
②Review the role of diet prescription in school setting.
③ Identify steps you can take to maximize well‐being.
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• National Foundation for Celiac Awareness (NFCA)
• 501(c)(3) non‐profit organization
• Drives diagnoses
• Improves quality of life
• Three strategies: Education, Empowerment, Advocacy
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Who is the NFCA?
Advocacy Empowerment
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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, 20122. Sapone et al, 2012
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Gluten‐Related Disorders Spectrum
• Celiac Disease:
• Chronic, small intestinal immune‐mediated enteropathy
• Precipitated by exposure to dietary gluten
• Must have genetic predisposition
• 1 in 141 Americans
• 83% undiagnosed (or misdiagnosed)
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Gluten‐Related Disorders Spectrum
• Non‐Celiac Gluten Sensitivity:
• Also precipitated by ingestion of gluten
• Immunological, morphological or symptomatic manifestation
• Celiac disease and wheat allergy excluded
• Physician‐monitored exclusion diet• Followed by open challenge
• Prevalence unknown – 6%??
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1. Ludvigsson et al, 20122. Sapone et al, 2012
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Gluten‐Related Disorders Spectrum
• Wheat Allergy:
•Adverse immunologic reaction to wheat proteins
•Five possible categories, based on:•Route of allergen exposure•Underlying immunologic mechanisms
• IgE antibodies play central role
•0.4% in the U.S.
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1. Ludvigsson et al, 20122. Sapone et al, 2012
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Symptoms: Beyond the GI Tract
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• Gas• Bloating• Diarrhea • Constipation• Irritability• Joint pain• Anemia
• Weight loss • Weight gain• Delayed growth • Small stature• Delayed menarche• Dental enamel defects
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Treatment
Strict, lifelong gluten‐free diet
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What is gluten?
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• The complex of water insoluble proteins from wheat, barley, rye and their derivatives.
• Also found in:• Spelt• Triticale
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Common Sources of Gluten
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Overlooked Sources of Gluten
•Couscous•Soy sauce•Marinades and salad dressing• Licorice• Imitation meat and seafood•Seasoned rice mixes•Soups and broths•Barley malt, malt flavoring•And more!
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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)
Source: The Hershey Company
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Defining “Gluten‐Free”
•U.S. Food and Drug Administration proposed rule•No prohibited grains – wheat, barley or rye•Final product must contain less than 20 parts per million of gluten
•Naturally gluten‐free foods•Example: “Eggs, a gluten‐free food.”
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20 Parts Per Million
How much is that?•20 milligrams in one kilogram
What does that look like?•Less than one drop ofmilk in a gallon
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Cross‐Contamination vs. Cross‐Contact
•You say “Tomato”…•Know your target audience
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Cross‐ContaminationFoodservice: Bacteria• Example: Salmonella on cutting board Consumers: May refer to this for gluten exposure
Cross‐ContactFoodservice: Particles or allergens• Example: Bread crumbs in a toasterConsumers: May not be aware of this term
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Major Sources of Gluten in School Setting
• Pizza• Sandwiches• Hot Dogs• Hamburgers• Chicken fingers• Salads with croutons• Macaroni and cheese• Spaghetti and other pasta
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• Cookies• Cupcakes• Wraps/Tortillas• Deli meats
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Challenges within the School Setting
• In the Lunchroom•Preparation and service•Shared equipment and utensils•Trading foods among students•Allergen‐free tables – double‐edged sword
• In the Classroom•Birthday parties, holidays and snack time
•Arts & Crafts•Play‐Doh©, pasta necklaces and paper‐mache
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Challenges within the School Setting
•Home Economics•Cakes, pasta, airborne flour •Should student participate?
•Field Trips, Overnight Trips, etc. •Bag lunch vs. Restaurant•Travel snacks and treats•Overnight trips – What can student eat?
•Sports Teams•Pizza party
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It’s not just about the food!
•Social isolation
•Bullying
•Anxiety
•Academics
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Gluten‐Free Alternatives
•Gluten‐free foods = available and tasty
• Bread and Wraps• Pizza• Pasta• Chicken nuggets• Crackers
• Individually‐packaged
•Parents often contribute supplies
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• Tacos• Pretzels• Gummy snacks• Cookies and Cupcakes• Ice cream cones
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Sample School Lunch Menu
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Sample School Lunch Menu
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• Successful nutrition management requires teamwork
• New challenges; new rewards
• Feelings matter, too
• Eating should be:• Positive• Safe• Secure
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Comprehensive Approach
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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)
•Role of Foodservice Directors •Cafeteria staff training: First line of defense!
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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
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http://www.fns.usda.gov/cnd/Guidance/accomodation_children
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“Schools must make substitutions in foods in the reimbursable meal for
students who are disabled and whose disability restricts their diet.”
IDEA 7 CFR Part 15b: www.fns.usda.gov/cnd/Guidance/accomodation_children
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Individuals with Disability Education Act (IDEA)
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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 state agency)
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Federal Regulations: IDEA vs. 504
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• IDEA• Disability• Special education needed
• IEP completed
• Accommodations made
• Section 504• Disability
• Special education not needed
• 504 plan completed
• Accommodations made
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What is an IEP?
•School must meet nutrition components•May supplement with statement on nutritional needs
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• Individualized Education Program • Written statement for child with disability
• Children with celiac disease and special education needs• Field trips, gym class and recess
•Discuss at IEP meeting or 504 Plan
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IEP or 504 Meeting ‐ Team Effort
• Food Service Director (FSD)• Registered Dietitian (RD)
•School•Community
• School Nurse • Principal• Parents• Student• Others involved in care
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The Diet Prescription
•Necessary prior to meeting
• Includes:•What the disability is•How it restricts 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
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Sample Diet Prescription
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Sample Medical Statement
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Authorized Licensed Medical Authority
•Medical doctor•Physician assistant•Nurse practitioner•Registered dietitian*•Licensed nutritionist*
*Only if child does not have a disability.
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The Diet Prescription
•Send to Foodservice Department or Registered Dietitian•NOT directly to cafeteria staff
•Keep copy in:•Cafeteria•Nurse’s office•Others responsible for care
•Does not have to be updated every year
•Do note:•Transfer to new school•Change in dietary needs or preferences
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The Diet Prescription
•Can never be revised or changed•Even if food not available•Liability issues•Only medical authority can revise
•Plan ahead•What situations, i.e. field trips, may arise?
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Substitutions – Follow as Prescribed
• Inappropriate substitutions can result in:•Cross‐contact•Adverse reactions
•Do not serve if…•Not on prescription•Label is unclear
•Always have safe foods available for child
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Responsibilities of School Administrators
•Know the process•Help families understand requirements•Include school nutrition staff•Be aware of risks: liability and negligence
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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.”
USDA Food and Nutrition Service: Accommodating Children with Special Dietary Needs
http://www.fns.usda.gov/cnd/Guidance/
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Next Steps
•Now, what is your action in responding?
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Reminder: Who are the players?
• Food Service Director (FSD)• Registered Dietitian (RD)
•School•Community
• School Nurse • Principal• Parents• Student• Others involved in student’s care
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When to begin?
•Start in August or beginning of school year•Continue conversation throughout school year
•Address problems/concerns
•New diagnosis•Begin when nurse is notified
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Steps to Success: Education
•Foodservice Director: Attend parent‐student lunch
•Medical Provider: Invite an expert to school
• Librarian/Teacher: Stock books in the library
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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
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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
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•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!
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Steps to Success: Communication
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Communication: Cafeteria Staff
•Discuss:•Menus•A la carte/vending machines•Recipes•Food handling practices•Cleaning practices
•Keep original food labels
•Understand disability laws
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Student’s Responsibilities
•Often aware of symptoms
•Can learn about their diet
•Be diligent about ALL foods
•Not just the cafeteria
•Communicate with teacher, nurse or other students
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Student’s Responsibilities
•Avoid allergic foods•Depends on age
•Do not trade or share foods
•Proper hand washing
•Teach friend to recognize symptoms
• Identify bullies
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Questions?Comments?
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Thank You!
©2013 NATIONAL FOUNDATION FOR CELIAC AWARENESS
We want to hear from you!
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Alice Bast, Founder and President, [email protected]
Gabriela Pacheco, RDN, LD, SNS, School Nutrition [email protected]
National Foundation for Celiac Awareness:Facebook.com/nfceliacawareness
@CeliacAwareness
Pinterest.com/CeliacCentral
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Resources
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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
Primary Care CME ‐ www.CeliacCMECentral.com
Product Reviews ‐ www.GlutenFreeHotProducts.com
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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
Food Allergy Research & Education ‐ www.foodallergy.org
United States Department of Agriculture ‐www.fns.usda.gov/cnd/guidance/default.htm
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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.nichcy.org
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