iEat

Program for Teens Living with Celiac Disease

What is Celiac Disease?

CD is an autoimmune disorder of the small

intestine,1 and
Gluten is the kryptonite:
Wheat
Barley
Rye
Other hybrids (kamut, triticale)

There is no cure, and only one treatment:

LIFE-LONG GLUTEN-FREE DIET

What Happens in CD
When gluten enters the small intestine, it activates the
immune system
The immune system then attacks the lining of the small
intestine (villi), which leads to malabsorption of nutrients

Symptoms include 2:
Typical: malabsorption,
chronic diarrhea,
failure to thrive
Atypical: chronic
abdominal pain
Silent: no symptoms

Who can get CD?

CD affects 1:100 children, teens, and adults worldwide

Those most at risk 1:

Have 1st-degree relatives with CD

Have autoimmune diseases such as Type I Diabetes
Are non-Hispanic white

Since villi damage causes malnutrition, CD in growing children and

teens requires special attention

If left untreated, CD can cause1:

- Stunted growth

- Delayed puberty

- Depression

- Low bone mineral density

- Dental enamel hypoplasia

- Epilepsy with cerebral calcifications

 Target group: Teens aged 15-18 diagnosed with

CD within the past 6 - 12 months
Although CD primarily affects non-Hispanic
whites, our program is open to all ethnicities
Location: Digestive Disease & Nutrition Center of
Westchester, NY
Why teens?

Age and Diagnosis

Teens are at a point in their life where they have
independence to make their own food decisions
Knowledge about CD and risks of eating gluten is
important, however, compliance in teens is poor, even
with knowledge about risks 3
Late CD diagnosis is associated with more difficulty in coping with CD
and adhering to strict GFD, and lower general quality of life 4
Up to 44% do NOT comply with GFD 5
Most of the time, lack of dietary compliance is related to social
situations, not a lack of knowledge 6

Home is not the issue,

it is the social situations

Feelings of Stigma
Stigma is a direct visible sign of something unusual enough to
disqualify a person from full social acceptance...[it] has the capacity
to undermine an individuals public identity, (Goffman, 1963)

Stigma doesnt have to be from actual discrimination -- the FEAR

of the consequences is powerful enough to avoid the behavior 6

Teens with CD feel stigma everyday 6

GFD makes condition visible and attracts unwanted attention
Awareness of being different and not being able to fit in
Appearance of their meals or poor availability of GF foods
Embarrassment, alienation, anger, guilt

Need for Social Support

Meeting other teens with CD is comforting 6:
Opportunity to share experience of having CD and eating GFD
Interacting with others with CD helped in finding how to
manage the stigma
Focus groups empowered participants, especially if the issue
was meaningful to them

These findings underscore the need for CD

adolescents to talk among themselves, their
condition, and ways to deal with social
dilemmas

Is Gluten-Free Enough?

Strict GFD improves or reverses conditions

But, GFD advice is not enough

20% - 38% of patients with CD have nutritional deficiencies or
imbalances 7
Processed GF food have lower nutritional value than their
7
gluten-containing counterparts
Common Nutrient
Deficiencies in CD 7
At Diagnosis
Calorie/protein
Fiber
Iron
Calcium
Vitamin D
Magnesium
Zinc

GFD

Fiber
Iron
Calcium
Vitamin D
Magnesium

GFD Products Long-Term GFD

Fiber
Fiber
Iron

Folate, Niacin,
Vitamin B12

Folate, Niacin,
Vitamin B12

Folate, Niacin,
Vitamin B12

Folate, Niacin,
Vitamin B12

Riboflavin

Riboflavin

Riboflavin

Riboflavin

Evidence-based
Strategies

Educational
Behavioral
Affective

Empowerment
Meta-analysis evaluating health intervention
strategies showed combination of strategies
had highest level of compliance 8

Educational
Convey information to build knowledge 8
Group teaching
Visual and written materials
American Gastroenterological Association: increased CD

knowledge means increased GFD compliance 9

5 min video, grain intro, label reading
Objectives: awareness of risk, knowledge of

ingredients

Behavioral
Influence and reinforce behavioral patterns 8
Skill building and practice activities 8
American Diabetic Association: improved outcomes for

self-management programs with behavioral strategies 10

Follow the leader, restaurant tips, supermarket tour,

party time activity

Objectives: self-efficacy, gluten abstention, involve

local restaurants

Affective
Emphasize feelings, emotions, relationships, social support 8
Group discussions, build peer support, connect with local CD
society (Westchester Celiac Sprue Support Group) 8
Adolescent focus group: GFD compliance negatively
affected by lack of social support; meeting others w/ CD
helped manage stigma 6
GluTeen, group discussions, guest speaker
Objectives: peer support, self-efficacy

Empowerment
Critical-thinking, problem-solving, and self-management 11
Collaboration to determine goals, concerns, and priorities 12
Adolescents have more independence and decision-making
ability 11
Intervention used this approach: improved health outcomes
and positive feedback

13

Group discussions, cell phone app, cooking class

Objectives: self-efficacy, knowledge

Socio-ecologic Model:
Individual
Most activities will focus on the individual
Example: Label reading exercise

Teach how to navigate food labels to identify GF

foods
Group discussion will guide further topics covered
Practice exercise to apply what was learned
Ultimately, individual can independently identify
GF foods

Socio-ecologic Model: Organizational

Eating out presents major challenge for CD

individuals
Reach out to local eateries, encourage GF special
Incentives: monetary compensation and free

advertising during recruitment

Restaurant questionnaire

will guide further outreach

Health Behavior Theory

Perceived severity/benefits: video showing
negative effects of gluten, importance of GFD,
guest speaker shares personal experience 14
Call to action: educate about GF alternatives,
cooking class 14
Self-efficacy: label reading, cell phone app 14
Perceived barriers: supermarket tour, restaurant
tips14

Improving Gluten Avoidance in Adolescent

Celiac Patients

Intervention Plan
Length: 2.5 months, 1 class/week, (10 classes total)
Duration of class: 60 min.
Target Population: Adolescents aged 15-18, diagnosed with
CD within
the last 6-12 months.
Setting: Digestive Disease & Nutrition Center of Westchester

Main Goals:
To educate individuals on GFD and CD
To improve self management of CD among adolescents
To empower youth by giving necessary knowledge &
resources.
To increase self-efficacy & motivation

10-Week

Lesson Plan

1. Orientation Class: Lecture free class, open discussion based, team

building activity
GLUTEEN-Human Knot, Baseline Evaluation
2. What The Heck is Gluten? Introduction to gluten. Open discussion
lecture, Gluten Free Duck movie, Magic Stick Activity Grains presentation &
tasting.
3. Energy Equation ( F+S+PA=H): Basic Nutrition & Physical Activity
Class: Open Discussion Lecture, Follow the Leader Activity
4. Label Reading 101: Where are you hiding gluten? Activity, Phone
Application implementation.
5. Shopping Spree: ShopRite tour, Its Party Time Activity, RD & DT Q&A
6. You + Me = GlutenFree: Lecture Free Class: Guest Speaker-Peer Teen,
Goal Setting activity
7. GFF-Gluten Free Friend: Cooking/Tasting Class, Eating Out Tips, Open
Discussion lecture,
8. Cheating on GFD: Movie: Social Issues in teens with CD Open discussion
lecture, Glutened from Kissing - Gluten Cross Contamination.
9. Hands On- cooking class, open discussion, ingredient swap,

Specific Objectives
At the end of the session participants will be able to:
Identify what gluten is
Identify 3 symptoms of CD
Recognize 3 complications r/t to CD
Name 4 grains containing gluten & 4 GF grains

Materials:
Handout: You Cant Eat Me, I Can Eat You List of gluten
vs. GF grains
Broom Stick
Projector/TV-short movie
6 Dry Grains
6 Pre-Cooked Grains

Class #2: What the Heck is Gluten

Duration: 60 min.
Curriculum:
Magic Stick Activity-Team building activity (10 min)
Introductory Movie (2 min): Gluten Free Duck
Open Discussion Lecture (20 min):
What exactly is gluten?
What is Celiac Disease? What are the symptoms of Celiac
Disease?
Where can I find gluten?
What can happen to my body if I dont follow GFD?

Introduction to grains (20 min)

Grains Demo: gluten vs. gluten free grains
Grains Tasting: (pre-cooked).
Summary Discussion (8 min)

Specific Objectives
At the end of the session participants will be able to:
Recognize 5 claims made on the labels r/t gluten
Recognize 5 hidden sources of gluten
Navigate 2 Phone Applications
Create a basic shopping list included of safe GF products

Materials:
Handout: Where are you Hiding Gluten?
10 Sample GF and Gluten Containing
Products w/ labels
Smart Phones
Paper, Pencil

Class #4: Label Reading

Duration: 60 min.
101
Curriculum:
Open Discussion Lecture (25 min):

Label Claims: gluten-free, free of gluten, no gluten,

without gluten, made with no gluten- containing
ingredients, might contain wheat or modified food starch,
Caramel color, Dextrin, vegetable proteins, vinegars

Activity (5 min): Where are you hiding gluten?

Images of gluten-containing & GF foods

Phone applications (15 min):

Find me Gluten Free

Shop Well

Activity (5 min): Create a shopping list

Summary Discussion (10 min)

Specific Objectives
At the end of the session participants will be able to:
Recognize 5 GF options in the supermarket
Identify 5 alternative food options
Differentiate between GF and gluten containing products
Apply he knowledge of label reading/ Phone App use
Buy 5 GF items that can be served at a party

Materials:
Smart Phones
Store Coupons
GF food price

Class #5: Shopping

Duration: 60 min.
Spree
Curriculum:
Trip to ShopRite (60 min)

Meeting with RD, Injung Cassidy and DTR, Jessica Santiago

Store Tour (25 min)

GF food choices, label reading etc.

Its Party Time Activity (10 min)

Real life scenario / critical thinking activity, free gifts for
participants
Q&A with RD and DTR & open discussion session (25 min)

Considerations:

Attitude towards authority

Insecurities about physical appearance
Mood change & Impulsiveness
Athletic Performance
Peer Pressure
Interests & Needs
Motivation Level
Learning Style (interactive participation, audiovisual
aids etc. )

Evaluation
Minimum Outcome Standards of Stated Objectives
OBJECTIVE
Increase awareness of risk

STANDARD

Participant able to list one health risk

of gluten ingestion, compared to
baseline
Increase knowledge of ingredients
Participant able to identifyone
gluten-containing ingredient, and one
gluten-free food, compared to
baseline
Provide platformfor peer support
Participants take part in group
discussions
Involve local dining establishments
Two restaurants offer on-going
gluten-free menu options
Improve gluten abstention
50%of participants report improved
compliance in following diet 6
months after intervention
Positivelyimpact self-efficacy, as
50%of participants report negative
related to gluten-free diet compliance AGA blood test results, 6 months
after intervention

Baseline Survey

Measures
risks
Measures
foods
Measures
GFD
Measures
support

knowledge of health
knowledge of GF
motivation to follow
degree of peer

Sample Questions
Sometimes I choose to eat foods that have gluten in them, even though
I know Im not supposed to.
True
False
I have friends who also have celiac disease.
True
False
Eating foods that contain gluten:
a) is okay every once in a while
b) is only a problem if it makes my stomach hurt
c) can harm my body in ways I cant see or feel
d) is not something I have to worry about
McDonalds French fries are gluten free, because they are made from
potatoes.
True
False
I think following a gluten-free diet is too hard, and I dont plan to do it.
True
False

PROCESS: LESSON PLAN OUTLINE

1 researchers implements lesson

1 researcher observes, makes notes
Are participants engaged?
Are objectives being met?
Impediments? Successes?

EVALUATION OUTLINE AND

CHECKLIST

EVALUATION: LESSON PLAN CHECKLIST

LESSON 1

WELCOME: Both researchers and participants introduce themselves.

DESCRIPTION OF PROGRAM: Discuss some of the activities, intentions and goals of the next three
months. Allow participants to ask questions.

OPEN DISCUSSION: Prompt questions: How long have you known you had celiac? What are outside
interests sports, hobbies? What are concerns about following GFD? Are there any positives to a GFD?

TEAM BUILDING EXERCISE: GluTeen

BASELINE EVALUATION GIVEN: Allow 10 minutes to fill out evaluation.

SUPPLIES NEEDED:
Baseline evaluation
Pens or pencils

OBSERVATIONS:
Attendance number:

Did participants appear engaged?

Did participants appear to connect to their peers?

Was the lesson plan implemented as intended?

Comments:

Outcome: 6-month Follow Up

Repeat baseline survey (at conclusion
and 6 months)
Food frequency questionnaire
(gluten and gluten-free foods)
Have they used the Shop-Rite coupons?
Obtain permission to access lab work
measuring AGA
Have they kept in touch with peers from
program?

Challenges to Measuring Impact

Increasing national focus on celiac disease
in health media
Difficult to separate external/internal
factors in cultural shift
Possible areas to examine:
Are local restaurants offering more gluten-free
items?
Is celiac disease more familiar to the
community?
What are rates of diagnosed celiac disease?

References
1.

Gujral N, Freeman HJ, Thomson ABR. Celiac disease: prevalence, diagnosis, pathogenesis and treatment.World J Gastroenterol.
2012;18(42):6036-6059.

2.

Radlovi NP, Mladenovi MM, Lekovi ZM, Stoji ZM, Radlovi VN. Influence of early feeding practices on celiac disease in
infants.Croatian Medical Journal.2010;51(5):417-422.

3.

Arnone J, Fitzsimons V. Adolescents with celiac disease: A literature review of the impact developmental tasks have on adherence
with a gluten-free diet. Gastroenterol Nurs. 2012;35(4):248-254.

4.

Wagner G, Berger G, Sinnreich U, et al. Quality of life in adolescents with treated coeliac disease: Influence of compliance and age
at diagnosis.J Pediatr Gastroenterol Nutr. 2008;47(5):555-561.

5.

Errichiello S, Esposito O, Di Mase R, et al. Celiac disease: Predictors of compliance with a gluten-free diet in adolescents and
young adults. J Pediatr Gastroenterol Nutr. 2010;50(1):54-60.

6.

Olsson C, Lyon P, Hornell A, Ivarsson A, Sydner YM. Food that makes you different: The stigma experienced by adolescents with
celiac disease.Qual Health Res. 2009;19(7):976-984.

7.

Penagini F, Dilillo D, Meneghin F, Mameli C, Fabiano V, Zuccotti GV. Gluten-free diet in children: An approach to a nutritionally
adequate and balanced diet. Nutrients. 2013;5(11):4553-4565.

8.

Roter DL, Hall JA, Merisca R, Nordstrom B, Cretin D, Svarstad B. Effectiveness of interventions to improve patient compliance: a
meta-analysis. Med Care. 1998;36(8):1138-61.

9.

Rostom A, Murray JA, Kagnoff MF. American Gastroenterological Association (AGA) Institute technical review on the diagnosis and
management of celiac disease. Gastroenterology. 2006;131(6):1981-2002.

10.

Funnell MM, Brown TL, Childs BP, et al. National Standards for diabetes self-management education. Diabetes Care. 2011;34
Suppl 1(Supplement 1):S89-96.

11.

Smart C, Aslander-van vliet E, Waldron S. Nutritional management in children and adolescents with diabetes. Pediatr Diabetes.
2009;10 Suppl 12:100-17.

12.

Anderson RM, Funnell MM. Patient empowerment: myths and misconceptions. Patient Educ Couns. 2010;79(3):277-82.

13.

Anderson RM, Funnell MM, Nwankwo R, Gillard ML, Oh M, Fitzgerald JT. Evaluating a problem-based empowerment program for
African Americans with diabetes: results of a randomized controlled trial. Ethn Dis. 2005;15(4):671-8.

14.

Leung, M. Health Behavior Theories. [PowerPoint]. New York, NY: Hunter College Nutrition M.S. Program; 2014