Professional Documents
Culture Documents
Psychological
Health Training
Program
A toolkit for medical
and mental health care
practitioners to identify and
treat patients living with
celiac disease and other
gluten-related conditions
Prepared by
The Celiac Disease Program at
Childrens National Health System
The Celiac Disease Foundation
ACKNOWLEDGEMENTS
The Celiac Disease and Gluten-Related Conditions Psychological Health Training Program
was created by the Childrens National Health System Celiac Disease Program in partnership
with the Celiac Disease Foundation. A special thank you to Mi-Young Ryee, PhD; John
Snyder, MD; Shayna Skelley Coburn, PhD; Vanessa Weisbrod; Blair Raber; Steve Raber; Kate
Raber; Lauren Clary, PhD; and Donna Marschall, PhD, from Childrens National Health System;
Marilyn Geller; Rhonda Resnick; Peter Resnick; Alexis Resnick; and Henry Grunzweig from
the Celiac Disease Foundation; Dr. John Lavigne and Dr. Marissa Feldman from the Ann &
Robert H. Lurie Childrens Hospital of Chicago; for contributing to the development of this
manual. Funding was made possible by a grant from the Resnick Family and the Celiac
Disease Foundation. Childrens National would like to express sincere gratitude to both the
Resnick Family and the Celiac Disease Foundation for their support in the launch of this very
important initiative to advance psychological care for children and families living with celiac
disease and gluten-related conditions.
Living
Peter Resnick, father of a child living with celiac disease and Celiac Disease Foundation board member
Living
SECTION
Table of Contents
SECTION
SECTION
Introduction. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
About Celiac Disease. . . . . . . . . . . . . . . . . . . . . . . . . . . .
Diagnostic Methods. . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Treatment. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
SECTION
2
3
4
OVERVIEW
SECTION
Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Maintaining a Gluten-Free Lifestyle. . . . . . . . . . . . . . .
Developmental Stages . . . . . . . . . . . . . . . . . . . . . . . . . .
Social Impact . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Key Points. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
SECTION
Reference Documents . . . . . . . . . . . . . . . . . . . . . . . . . .
Joining a Support Group and Camps
for Children . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Nutrition Education and Cooking Classes. . . . . . . . .
APPENDICES
Case Examples . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Key Points. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
SECTION
6
7
Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Related Conditions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Key Points. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Appendix B Preventing
Cross-Contamination. . . . . . . . . . . . . . . . . . . . . .
USER AGREEMENT
A. Terms and Conditions
Please read this agreement in its entirety prior to use.
Childrens National refers to the Childrens National
Medical Center and all of its affiliates and subsidiaries.
The Celiac Disease and Gluten-Related Conditions
Psychological Health Training Program (Manual) is
designed to serve as a guide to healthcare providers
seeking to identify and treat patients living with celiac
disease and other gluten-related conditions. By utilizing
this Manual, you, (a User, collectively Users) agree to
the terms and conditions that follow.
B. Disclaimer
Recommendations provided by Childrens National
are derived from evidence-based literature and a
multidisciplinary team of physicians, psychologists,
dietitians, nurses and community advocates.
The information included in this Manual is for
informational and educational purposes only.
Childrens National makes reasonable efforts to ensure
that the information provided is complete, and where
appropriate, based on scientific evidence; however,
Childrens National makes no assurances as to whether
the provided information will at all times be current.
Furthermore, this document does not reflect the best
medical practice for all circumstances. Users of this
Manual should not substitute information contained for
professional judgment, nor should they rely solely on
the information provided when rendering a diagnosis
or choosing a course of medical treatment.
C. Intellectual Property
You agree that Childrens National retains all rights,
title, and interest in the Childrens National logo, and
all other trademarks, service marks, text and images
contained within this document pursuant to the
trademark and copyright laws of the United States.
All such intellectual property is considered to be
the property solely of Childrens National, except as
otherwise identified. All rights are reserved. No part of
this Manual may be modified, reproduced, or displayed
for any commercial or public purpose without specific
advance written permission from Childrens National.
Any copyrights and trademarks that are not the
property of Childrens National, which may also be
referenced in this document, remain the property of
their respective owners.
D. Liability
Childrens National does not warrant the content
of this document and specifically disclaims, to the
fullest extent permitted by law, any and all warranties,
express or implied, of any kind or nature whatsoever.
Neither shall Childrens National be liable under any
circumstances for any claims, losses, or causes of
action that may arise from the use of this Manual or the
information contained in it.
SECTION
Overview
INTRODUCTION
The goal of this manual is to increase medical
and mental health providers awareness of celiac
disease and other gluten-related conditions in
pediatric populations. Despite being a relatively
common condition, celiac disease is still considerably
underdiagnosed (Rubio-Tapia et al., 2012) and can often
be misdiagnosed as its symptoms may not be apparent,
can mimic other conditions or can be varied and can
affect many different parts of the body. We encourage
providers to take a thoughtful and thorough approach
to differential diagnosis and include celiac disease as
a consideration for both medical and mental health
assessments. In addition to improving the recognition
of celiac disease, we emphasize the importance of
Ongoing Screening:
Celiac disease can develop at any time in life. Even if
previous tests for celiac disease have been negative,
repeat testing is required if symptoms persist or new
symptoms develop.
TREATMENT
The only treatment for celiac disease is strict adherence
to a lifelong gluten-free diet, which means eliminating
all forms of wheat, rye, and barley from a patients diet.
Patients who strictly follow the gluten-free diet can
begin to experience relief of symptoms as soon as one
week after starting the diet, although it often takes six to
12 months for the small intestine to heal in children and
up to two years to heal in adults.
Routine follow-up with a medical provider is very
important after a celiac disease diagnosis. After the
Gastrointestinal
Behavioral/Psychiatric
Autoimmune
Diarrhea
Lactose intolerance
Abdominal distention
Wasting
Change in appetite
Constipation
Dyspepsia
Bacterial overgrowth
Malabsorption
Flatulence
Reflux disease/heartburn
Hepatitis
Bloating
Vomiting
Ulcers mouth, esophageal, stomach,
upper small intestine
CD can be confused with Irritable Bowel
Syndrome (IBS) and Inflammatory Bowel
Disease (IBD)
Depression
Hypochondria
Inability to concentrate, brain fog
Anxiety
Neurosis
Moodiness
Obsessive-compulsive disorder
Attention-deficit/hyperactivity
disorder (ADHD)
Autism Spectrum Disorder
(Although no studies have shown
a definitive link between celiac
disease and ADHD and Autism,
many families feel their children
have improved on a gluten-free
diet)
Type 1 diabetes
Hypothyroidism (especially
Hashimotos
Disease)
Hyperthyroidism (Graves Disease)
Secondary hyperparathyroidism
Sjogrens Syndrome
Dilated (congestive)
cardiomyopathy
Alopecia areata rheumatoid
arthritis
Fibromyalgia
Collagen-vascular disease
Aphthous stomatitis
Multiple sclerosis
Systemic lupus erythematosis
Reynauds Syndrome
Nutritional
Neurological
Skeletal
Weight loss
Stunted growth
Poor weight gain,
failure to thrive
Obesity
Hypoglycemia
Seizures
Migraines/headaches
Brain atrophy and dementia
Peripheral neuropathies,
including paresthesias
Paraplegia
Ataxia
Osteoporosis/osteopenia
Joint, bone, muscle pain
Dental enamel defects
Clubbing
Dermatologic and
Mucous Membranes
Dermatitis herpetiformis
Eczema
Psoriasis
Vitiligo
Acne
Rosacea
Urticaria
Vasculitis
RELATED CONDITIONS
Non-Celiac Gluten Sensitivity (NCGS)
10
SECTION
h
aving too much energy, having trouble
concentrating or following through on plans
h
earing voices or seeing images that other people
do not experience
SCREENING INSTRUMENTS
The use of screening measures with patients with celiac
disease and other gluten-related conditions can further
assist in identifying children and adolescents in need of
11
Measure
For Age
Who completes
Developed By
4 7
8 12
Parent report
Parent report
Childrens Hospital
of Philadelphia1
4 16
Parent report
Massachusetts General
Hospital2
11 18+
Youth self-report
Massachusetts General
Hospital2
24
4 10
11 17
C
ontact Thomas J. Power, PhD (power@email.chop.edu) for availability and use
http://www.massgeneral.org/psychiatry/services/psc_forms.aspx
CASE EXAMPLES
The following are three case examples of children
and adolescents with diagnosed celiac disease who
would benefit from mental health evaluation and
DANIEL
Daniel is a 14-year-old boy who was diagnosed with
celiac disease at age 8. He had previously been
adherent to a gluten-free diet, however, since starting
ninth grade this year, his parents noticed that he
had developed more abdominal pain, bloating, and
diarrhea. After continued presence of symptoms, his
parents suggested that Daniel see his pediatrician for
evaluation, and he disclosed that he had been eating
foods with gluten since beginning his new school.
Daniel expressed feelings of anger and frustration that
he had to follow a special diet and that he wanted
to be like everyone else. Although his parents had
worked with the school to put a 504 Plan** in place,
A customized education plan for students with special health care needs in public schools; please refer
to Section 5 Securing a 504 Plan for Gluten-Free School Lunches for more detailed information
12
LIZ
Liz is a 12-year-old girl with type 1 diabetes and celiac
disease (diagnosed at ages 10 and 11, respectively).
Liz has a history of Generalized Anxiety Disorder
(GAD) and Attention-Deficit/Hyperactivity Disorder
(ADHD), which had previously been well-managed
on medication (escitalopram and methylphenidate).
However, in the last six weeks, her father noticed that
Liz had been increasingly more anxious. Despite her
health being stable, Liz complained of stomachaches
and had difficulty going to school. Lizs father noted
that Liz was more hesitant to eat outside of the home
SAMUEL
Samuel is a 5-year-old boy who was recently diagnosed
with celiac disease. Samuels mother requested a
meeting with a psychologist for guidance on how to
explain celiac disease and a gluten-free diet to Samuel.
In particular, she was concerned that Samuel would not
understand or comply with a gluten-free diet because
he had never experienced overt symptoms related to
celiac disease. Samuels mother also wanted ideas on
working with the school and how to talk with extended
family about celiac disease.
13
SECTION
Irritability
Mood changes
Anxiety
Fatigue
Difficulties with concentration and attention
Sleep difficulties
Decreased appetite
14
Assessment
Diagnosis / Intervention
Treatment
Thorough history
Onset, duration and
frequency of symptoms
Possible triggers
What has been tried,
and to what effect
Functional impairment
Has there been a
medical evaluation?
D
evelop diagnostic impression
Target presenting problems
Continue to monitor somatic
symptoms triggers, strategies
that work, what interference do
symptoms cause, any potential
secondary gains or reduction in
daily demands?
Facilitate adaptive coping
with symptoms
S
ymptom improvement,
e.g., anxiety, mood, etc.
Functional improvement,
e.g., academic, school
attendance, social
engagement, etc.
15
CASE EXAMPLES
The following are three case examples of patients seen for mental health treatment, for which
a referral for evaluation of celiac disease or other gluten-related condition is recommended.
Again, names and details have been modified to protect confidentiality.
MARTHA
GABRIELLA
16
JASON
Jason is an 8-year-old boy who presents for a first
psychiatric evaluation for concerns about inattention,
academic decline, and oppositional behavior. Parents
report Jasons grades have dropped during third grade,
and he is experiencing more disciplinary problems
at school (e.g., talking out of turn, not following
directions, out of his seat). Parents described Jason
has been eating less, partly because he is active and
cant sit still, but he also complains of stomachaches
and feeling uncomfortably full after eating very little.
Jason has never been a great eater and has always
been small for his age. Parents also noted Jason has
a history of skin picking, especially around his fingers,
17
SECTION
DIAGNOSIS
Being diagnosed with celiac disease may generate
mixed emotions. For some children and adolescents
who experience numerous medical evaluations and
misdiagnoses, a confirmed diagnosis of celiac disease
or a gluten-related condition may provide a sense of
relief and an explanation. However, for those patients
who experience the subtler symptoms of the disease,
diagnosis may be unexpected and confusing. The
realization of having a chronic illness that requires
life-long adherence to a gluten-free lifestyle can also
be a challenge. Some of the goals of psychological
intervention at this initial stage are to help children
and adolescents attain a developmentally appropriate
understanding of celiac disease and its treatment,
provide assistance in accepting the diagnosis, and begin
to feel empowered in coping adaptively with the disease.
5-year-old:
Eating foods with gluten can cause problems for your belly and make it hard for
your body to grow and stay healthy.
Celiac disease is a condition when eating gluten (found in foods like bread, pizza,
10-year-old:
cupcakes) can cause a reaction in the body that damages a part of your digestive
tract (villi) that helps absorb nutrients. When your body cant absorb these
important vitamins and nutrients, you may feel sick and your body has trouble
growing and staying healthy.
Celiac disease is a chronic disorder in which eating gluten causes your immune
15-year-old: system
to react and damages the villi in the small intestine. The damage
interferes with your bodys ability to absorb vitamins and nutrients and can cause
you to feel sick, disrupt your growth, and lead to other complications.
18
Having
appealing
gluten-free
alternatives
available
Learning about
celiac disease
and effective
management
Utilizing social
supports:
family, friends,
community
Addressing
any associated
emotional or
behavioral concerns
19
DEVELOPMENTAL STAGES
Coping with celiac disease and treatment presents
different challenges at varying developmental stages.
For younger children, parents have more responsibility
and control over their childs day-to-day life, but as
children mature, they have greater independence and
autonomy. Also, as children grow older, schools, social
Early Childhood
School-aged
Adolescence
Young Adulthood
Parents
take greater
responsibility
of disease
management since
they are more
involved in all
aspects of daily life
Parents need to
share information
and educate other
adults/caregivers
who will be
spending time with
the child
Transition to living
independently includes
greater responsibility,
e.g., shopping for
gluten-free foods and
products, planning and
preparing meals
Children/families
manage celiac disease
while participating in
extracurricular activities
sports, clubs, teams, etc.
Learn how to
effectively advocate for
oneself
Navigate social,
educational and work
environments
20
SOCIAL IMPACT
Celiac disease and other gluten-related conditions have
a significant social impact. Some children experience
physical effects related to celiac disease such as
short stature, chronic fatigue, abdominal pain, loose
stools, headaches, seizures or skin changes. Support
in coping with these symptoms and minimizing
their disruption to social, academic, emotional and
behavioral functioning is an important component of
psychological intervention.
As many social activities involve food and eating,
these situations can be a source of stress for children
and adolescents with celiac disease and other glutenrelated conditions, as well as their parents. Its common
for youth to feel socially isolated or different from
peers due to their gluten-free diet. Acknowledging,
and normalizing these feelings, is a good first step
to helping youth cope more adaptively and begin to
find ways to take control of their disease and health.
Childrens needs may vary according to their age and
developmental functioning, e.g., younger children may
need more scripts on what to say and how to respond
to questions, and adolescents may benefit from help
21
D
eep breathing, visual imagery, progressive
muscle relaxation
C
onnect with others with celiac disease via support
groups, camps, etc.
E
ngage with the larger community through
cooking classes and gluten-free expos
Cognitive Strategies
U
se self-talk to coach yourself through difficult
situations or feelings
M
aintain balanced thinking (avoid all-or-none
thinking; see positive and negative)
Change channels distract yourself by switching to
a new topic or activity
L
earn problem solving skills set appropriate
expectations and goals, evaluate pros and cons of
options, and consider consequences/results
Physical Body
Other Complications
Since the symptoms related to celiac disease can
impact so many different areas of the body, it is
important to continue monitoring physical health,
including considering potential comorbid diagnoses,
when appropriate. Those youth who are symptomatic
prior to celiac disease diagnosis may see improvement
or resolution of symptoms following elimination of
gluten. However, some youth may continue to present
with symptoms even after maintaining a gluten-free
lifestyle. Persistent presence of symptoms, especially
in the context of good gluten-free adherence may
signal the need for medical re-assessment. Symptoms
such as fatigue, pain, and feeling sick frequently, or
for lengthy periods, can be a challenge and cause
disruption to daily life.
In addition to medical evaluation to explore potential
causes for ongoing symptoms, the following are
strategies for fostering adaptive coping and minimizing
functional impairment.
Within
Academic
Settings
Extracurricular
Activities
Extracurricular
Activities
Find ways to stay connected with peers and friends, e.g., through play dates, parties,
messaging, e-mail or video conference, if its difficult to see them in person
Modify activities as needed for your energy level
22
SECTION
Advocacy and
Community Support
REFERENCE DOCUMENTS
When a patient is first diagnosed with celiac disease,
it is critically important that they are immediately
scheduled to see a dietitian to receive information
about the transition to a gluten-free diet. In
Appendices A and B, you will find resources, The
Gluten-Free Diet: A Basic Overview and Preventing
Many children with celiac disease and other glutenrelated conditions miss out on typical childhood
experiences such as attending camp due to the
limited availability of safe resources available to
them. The Celiac Disease Foundation provides
opportunities for children to attend a gluten-free
sleep away camp, thus allowing them to enjoy
the camp experience in a safe environment. More
information about their program can be found at
celiac.org/camp.
23
24
C
hildrens National Health Systems Washington
DC Gluten-Free Expo (expo and educational
session held annually in Washington, DC ). More
information at www.DCGlutenFreeExpo.com
G
luten & Allergen-Free Events (expos in Arizona,
California, Georgia, Illinois, Massachusetts, New
Jersey, Texas, and Washington). More information
and dates at www.gfafexpo.com
G
luten & Allergen-Free Wellness Events (expos in
Connecticut, Florida, Missouri, Nevada, and North
Carolina). More information and dates at http://
gfafwellnesspresentations.blogspot.com
Retail Stores
Online Shopping
If families prefer to buy products in bulk or online,
there are many great options including the Gluten
& Allergy-Free Marketplace. Created by the Celiac
Disease Foundation, this online marketplace connects
gluten-free consumers to safe and reliable products.
Each product contains a description and a way to
add it to a shopping cart. Once the cart is complete,
users can checkout and purchase the items through
the Amazon.com system.
25
SECTION
REFERENCES
Celiac Disease
Celiac Disease Foundation
http://celiac.org/
Celiac Disease Program at Childrens National Health
System
http://childrensnational.org/departments/celiacdisease-program
Rubio-Tapia, A., Ludvigsson, J.F., Brantner, T.L., Murray,
J.A., & Everhart, J.E. (2012). The Prevalence of Celiac
Disease in the United States. The American Journal of
Gastroenterology, 107, 1538-1544.
26
Psychological Health
American Psychological Association
Change Your Mind About Mental Health website
http://www.apa.org/helpcenter/change.aspx
Behavioral Health Checklist (BHCL)
Childrens Hospital of Philadelphia
Contact Thomas J. Power, PhD (power@email.chop.edu)
for availability and use
Power, T.J., Koshy, A.J., Watkins, M.W., Cassano, M.C.,
Wahlberg, A.C., Mautone, J.A., Blum, N.J. (2013).
Developmentally and culturally appropriate screening
in primary care: development of the behavioral health
checklist. Journal of Pediatric Psychology, 38 (10),
1155-1164.
Pediatric Symptom Checklist (PSC)
Pediatric Symptoms Checklist Youth Report (Y-PSC)
Massachusetts General Hospital website
http://www.massgeneral.org/psychiatry/services/psc_
forms.aspx
Strengths and Difficulties Questionnaire (SDQ)
Youth in Mind website
http://www.sdqinfo.org/a0.html
Goodman R (1997) The Strengths and Difficulties
Questionnaire: A Research Note. Journal of Child
Psychology and Psychiatry, 38, 581-586
Goodman R, Meltzer H, Bailey V (1998) The Strengths
and Difficulties Questionnaire: A pilot study on the
validity of the self-report version. European Child and
Adolescent Psychiatry, 7, 125-130
27
SECTION
Appendix A
WHAT IS GLUTEN?
Gluten is a protein found in all forms of wheat, rye, and
barley. It is most commonly found in food, but it also
hides in medicine, vitamins, and make-up. The first thing
anyone should do when starting a gluten-free diet is
schedule a meeting with a skilled dietitian or nutritionist.
A well-trained professional can help teach the basics
Acorn Flour
Almond Flour
Amaranth
Arborio Rice
Arrowroot
Bakers Yeast
Basmati Rice
Bean Flours
Brown Rice
Brown Rice Flour
Buckwheat
Hominy
Instant Rice
Kasha
Lentils
Millet
Modified Corn
Starch
Modified Tapioca
Montina
Peanut Flour
Potato Flour
28
Calrose
Canola
Cassava
Channa
Chestnut
Chickpea Flour
Coconut Flour
Corn
Corn Flour
Corn Gluten
Corn Meal
Cornstarch
Cottonseed
Dal
Dasheen Flour
Enriched Rice
Fava Bean
Flax
Flax Seeds
Garbanzo
Glutinous Rice
Guar Gum
Potato Starch
Quinoa
Red Rice
Rice Bran
Rice Flour
Risotto
Sago
Sesame
Sorghum
Soy
Soybeans
Sunflower Seeds
Sweet Rice Flour
Tapioca
Tapioca Flour
Taro Flour
Teff
Tofu
White Rice Flour
Xanthan Gum
Yeast
Yucca
Safe foods
Unsafe foods
Caramel Coloring
Carboxymethyl
Carob Bean Gum
Celluose
Corn Syrup
Cream of Tartar
Dextrose
Distilled Vinegar
Ethyl Maltol
Frutose
Fumaric Acid
Gelatin
Glucose
Invert Sugar
Karaya Gum
Lactic Acid
Lactose
Lecithin
Malic Acid
Maltodextrin
Maltol
Mannitol
Methylcellulose
Monosodium
Glutamate
Papain
Pectin
Polysorbate
Propylene Glycol
Psyllium
Sodium Benzonate
Sodium
Metabisulphite
Sodium Nitrate
Sodium Sulphite
Sorbitol
Spices (100% pure)
Stearic Acid
Sucralose
Sucrose
Sugar
Tartaric Acid
Tartrazine
Titanium Dioxide
Vanilla Bean
Vanilla Extract
Xylitol
Yam
Yeast; Autolyzed
Autolyzed Yeast
Extract
Nutritional Yeast
UNSAFE FOODS
Below is a list of basic food items that contain gluten. Its important to note that this is not a complete list
of gluten-containing foods. If ever unsure about the safety of a product, call the manufacturer directly.
Barley
Barley Extract
Barley Grass
Barley Malt
Barley Pearls
Bran
Bleached Flour
Bulgur
Bulgur Wheat
Croutons
Couscous
Durum
Einkorn
Emmer
Farina
Fu
Graham
Hordeum Vulgare
Hydrolyzed Wheat
Protein
Kamut
Macha
Malt
Malt Flavoring
Malt Syrup
Malt Vinegar
Matzo
Mir
Rice Malt
Rye
Seitan
Spelt
Semolina
Sprouted Wheat
Tabbouleh
Triticale
Wheat
Wheat Starch
29
M
alted Grains (any grain can be malted. For example,
gluten-free beer manufacturers use malted sorghum
as an ingredient. This is considered safe. A malted
grain would be unsafe if the malted ingredient is
wheat, rye or barley)
B
eer (all forms are unsafe except those labeled
gluten-free)
B
eef/Chicken/Fish/Vegetable Stock (may
contain wheat)
Bouillon (may contain wheat)
B
rewers Yeast (depends on whether its a
by-product of the brewing process [unsafe]
or made from sugar beets [safe])
D
extrin (could be made from wheat, corn, potato,
arrowroot, rice or tapioca)
Fillers (could be wheat, corn, potato or other starch)
Lipstick/Lip Gloss/Lip Balm (may contain wheat or barley)
Questionable foods
30
Appendix B
Preventing Cross Contamination
CHILDRENS NATIONAL HEALTH SYSTEM CELIAC DISEASE PROGRAM
31
32