& gluten-free diet guide to getting started · when gluten is removed, the autoimmune reaction...

Celiac Disease & Gluten-Free Diet Guide to Getting Started

Created and maintained by the Celiac Disease Program at Children’s National Health System

Celiac Disease Overview . . . . . . . . . . . . . . . . 1

Our Celiac Disease Program . . . . . . . . . . . . .2

Symptoms of Celiac Disease . . . . . . . . . . . . .4

Diagnosis of Celiac Disease . . . . . . . . . . . . .6

Management of Celiac Disease . . . . . . . . . .8

The Gluten-Free Diet . . . . . . . . . . . . . . . . . . .9

Gluten in Medications . . . . . . . . . . . . . . . . .10

School Lunch Safety . . . . . . . . . . . . . . . . . . . 11

Reading Food Labels . . . . . . . . . . . . . . . . . . .12

Dining at Restaurants . . . . . . . . . . . . . . . . . . 13

Frequently Asked Questions . . . . . . . . . . . .14

What’s Inside

Celiac Disease Program at Children’s National Health System | 1

Celiac Disease Overview

Below is a short-course in the biology of the small intestine and

celiac disease . It is our hope that if you understand the structure

and function of the small intestine and its response to gluten in

gluten-intolerant individuals, you will have a greater appreciation

of the crucial nature of the gluten-free diet as the only treatment

for celiac disease .

Since the structure and function of the human body are

intricately connected, any damage to the body’s structure will

usually alter its function . In the case of celiac disease, a genetic,

autoimmune disease, the body targets an attack on the small

intestine whose function is to absorb all of the nutrients from the

food we eat including vitamins and minerals .

Ironically, in affected individuals, damage to the small intestine is

caused by food – specifically, a protein known as gluten, which

is found in wheat, barley, and rye . When gluten is ingested by

those who have an intolerance, an autoimmune reaction causes

inflammation and damage to the nutrient-absorbing villi and the

surrounding tissue . Villi are tiny, finger-like projections within the

small intestine that become blunted, or shortened, when a gluten-

intolerant person ingests the protein . As the villi become shortened,

less surface area is available and fewer nutrients can be absorbed .

The end result is that when the body isn’t being adequately

nourished, other conditions and diseases can occur which further

degrade and complicate the quality of life for those who remain

undiagnosed . Injury can be found in nearly every system of the

body: the skeletal, reproductive, neurological and dermatologic

systems to name a few .

There are many known or suspected autoimmune diseases linked

to celiac disease including type 1 diabetes, thyroid disease and

skin diseases like Dermatitis Herpetaformis . However, the cause

behind them remains largely unknown, except in the case of

celiac disease, in which the trigger – gluten – has been identified .

When gluten is removed, the autoimmune reaction is halted and

the injury, including the damage to the villi, heals .

The continuing study of celiac disease provides helpful insights and

holds exciting research implications for other autoimmune diseases .

people has celiac disease,

making it one of the most

common serious diseases in

our society. Celiac disease has

become recognized as one of

the most important medical

diseases of the 21st century.

Although awareness and

understanding are increasing,

more than 90% of people

with celiac disease remain

undiagnosed. Most people

don’t even know they have it

so approximately three million

Americans end up needlessly

enduring headaches, stomach

problems and chronic fatigue,

among other symptoms.

1 in 100

? ?? ? ?? ?? ?

2 | www.ChildrensNational.org/Celiac

Our goal is to attack celiac disease through improved diagnosis,

comprehensive treatment, and awareness using a five-pronged

approach:

Treating

the medical

needs

Meeting the

psychological

needs

Educating

health-care

providers

Community

outreach and

advocacy Research

1 . STATE-OF-THE-ART CLINICAL CARE

The only treatment for celiac disease at this time is to

remove gluten from the diet . For some patients, starting a

gluten-free diet can result in improvement in as little as two

weeks . Our Program will:

• Provide comprehensive care for patients and families using the

most up-to-date methods .

• Screen children with any of the broad range symptoms of celiac

disease who are seen in all specialties at Children’s National .

• Create a Celiac Registry and Database for education and

research efforts .

2 . MEETING PSYCHOLOGICAL NEEDS

As maintenance of a gluten-free diet can prove to be a

significant challenge, especially for adolescents and young

adults, we offer psychological support as part of our care .

Our Celiac Disease Program includes a psychologist to help

children and their families adjust to the lifestyle changes

associated with celiac disease . We strongly believe the mind

and the body must be treated together to ensure the best

outcome for our patients . Our Program:

• Uses integrative medical techniques, such as biofeedback, to help

children deal with the stress associated with their lifestyle change .

• Empowers children to feel confident when explaining their dietary

needs to others .

Our nationally-

recognized Celiac

Disease Program

brings together a team of

expert physicians, nurses,

nutritional consultants, a

psychologist, and education

specialists dedicated to

detecting and treating

celiac disease in children

and families.

Children’s National Health System Celiac Disease Program Mission and Five-Prong Approach


• Treats feelings of isolation and depression

resulting from their diagnosis .

• Creates support groups for children and

their families .

• Establishes telemedicine options to offer

psychological health services to patients

nationwide .

3 . EDUCATION AND TRAINING OF

HEALTHCARE PROFESSIONALS

A crucial component of our approach is our

Continuing Medical Education Program .

We teach best practices for diagnosing and

treating children with celiac disease to other

health care professionals in the community .

Our Program:

• Increases awareness of celiac disease and its

potential for misdiagnosis .

• Organizes educational seminars for groups of

healthcare providers across various medical

disciplines . This includes hosting annual

conferences to discuss new knowledge .

• Encourages doctors to test all family members of

affected children to identify anyone who has the

atypical form of the disease .

• Ensures that gastroenterology fellows at

Children’s National have engagement with the

Celiac Disease Program .

4 . COMMUNITY EDUCATION, OUTREACH

AND ADVOCACY

Building awareness of the disease, its

symptoms and treatment among our

patients and the general public will help

improve disease understanding, ensure

compliance with the gluten-free diet, and

give families the skills to best manage their

gluten-free lifestyle . Our Program:

• Develops outstanding educational resources for

patients, families, and community members to help

with successful management of the gluten-free diet .

• Creates a model for improving gluten-free diet

compliance that includes innovative approaches

to education including nutrition, cooking, and

grocery shopping .

• Hosts annual community education forums that

promote better understanding of celiac disease

and the gluten-free diet, as well as build a robust

and unified local gluten-free community .

• Visits schools to educate teachers, administrators,

cafeteria staff, and nurses to make celiac disease

a better understood condition and provide a safe

experience for students .

5 . RESEARCH

An active clinical research program

will bring us closer to developing new

diagnostic tools and treatments for children

with celiac disease . Our Program will:

• Establish a research database that tracks patient

symptoms, behaviors, and needs that will be used

to develop new approaches to diagnose, treat,

and support patients with celiac disease .

• Foster collaborative, interdisciplinary research

projects that will increase the understanding of

this complex disease and define new approaches

to diagnosis and care .

• Investigate the connection between celiac

disease and other autoimmune diseases .


These subtler symptoms can significantly delay the diagnosis and lead to unnecessary

diagnostic tests and procedures along the way . Skin conditions, unexplained short

stature, delayed puberty, vitamin deficiencies, iron deficiency anemia unresponsive

to therapy, recurrent mouth sores, headaches, dental enamel defects, and

neuropsychiatric symptoms are among the “atypical” symptoms of celiac disease .

Below is a comprehensive list of the signs, symptoms and associated diseases related

to celiac disease .

ASSOCIATED AUTOIMMUNE DISEASES Type 1 Diabetes (insulin dependent)

Hypothyroidism

Hyperthyroidism (Grave’s Disease)

Sjogren’s Syndrome

Addison’s Disease

Dilated (congestive) Cardiomypoathy

Alopecia Areata – patchy hair loss

Rheumatoid Arthritis

Collagen-Vascular Disease

Multiple Sclerosis

Systemic Lupus Erythematosis

Reynaud’s Syndrome

BEHAVIORAL/PSYCHIATRICDepression

Attention Deficit Disorder (ADD)

Hyperactivity Disorder (ADHD)

Autism

Hypochondria

Inability to Concentrate, “brain fog”

Anxiety

Neurosis

Moodiness

Obsessive-Compulsive Disorder

CANCERSIntestinal Lymphoma

Non-Hodgkin’s Lymphoma

Small Intestinal Adenocarcinoma

Melanoma

Endocrine Malignancies

Thyroid Cancer

Esophageal Carcinoma

Celiac Disease was first thought to exist in young patients, ages

6-18 months, who showed signs of malnutrition, bloating,

abdominal pain, and diarrhea. Until recently, this “classic”

presentation was the only one described in medical textbooks. However,

recent research has uncovered a much more extensive list of subtle signs

and symptoms of celiac disease in both pediatric and adult populations.

Symptoms of Celiac Disease


DERMATOLOGIC & MUCOUS MEMBRANESDermatitis Herpetiformis

Eczema

Psoriasis

Vitiligo

Acne

Rosacea

Urticaria – Hives

Vasculitis

GASTROINTESTINALAbdominal Distention

Aphthous Stomatitis – Canker

Sores

Bacterial Overgrowth

Bloating

Change in Appetite

Constipation

Diarrhea

Constipation

Diarrhea

Dyspepsia (stomach aches)

Flatulence

Hepatitis – Elevated Liver

Function

Lactose Intolerance

Malabsorption

Reflux Disease/Heartburn

Ulcers

Vomiting

HEMATOLOGICLeukopenia

Anemia

Bruising

Vitamin K Deficiency

Bleeding

Thrombocytosis

Thrombocytopenia

NEUROLOGICALPeripheral Neuropathies

Paraplegia

Ataxia – Balance Disturbance

Seizures

Migraines/Headaches

Brain Atrophy and Dementia

NUTRITIONALWeight Loss

Stunted Growth

Low Blood Sugar

Poor Weight Gain (“failure to

thrive”)

RENALIgA Nephropathy

REPRODUCTIVEPremature Menopause

Infertility

Abnormal Menstrual Cycles

Spontaneous Miscarriage

Delayed Puberty

RESPIRATORYRespiratory Problems

Asthma

MUSCULO-SKELETALOsteoporosis/Osteopenia

Joint, Bone, Muscle Pain

Dental Enamel Defects

Clubbing (deformation of

fingers and/or fingernails)

Fibromyalgia

OTHER NON-SPECIFIC SYMPTOMS:Edema

Tetany

Chronic Fatigue

Swelling or Inflammation

Chronic Infections

Little or No Nail Growth


Simple and effective antibody blood tests are available to screen for celiac

disease . These tests measure levels of specific antibodies produced by

inflammation from gluten proteins in the intestine . A person with celiac

disease will have higher-than-normal antibody levels because of the

inflammation caused by the autoimmune response to the gluten protein .

The most commonly used antibody tests are measurements of the serum

immunoglobulin A (IgA), the IgA anti-tissue transglutaminase antibody (tTG-

IgA), and the IgA anti-endomysial antibody (EMA-IgA) . In order for the tests

to be accurate, patients must eat gluten regularly . If a patient has a positive

antibody test, he/she will need a small intestinal biopsy to confirm the diagnosis .

If a patient has a positive antibody test, the universal recommendation is

that he/she undergo an upper endoscopy with small bowel biopsies (small

pieces of tissue taken for microscopic examination) to determine if there is

damage to the intestine . The biopsy is the definitive, or the “gold-standard”

test for accurately diagnosing celiac disease .

Children receive anesthesia so that they have no pain or memory related

to the procedure . During the procedure, an endoscope (a long, thin,

flexible tube with a camera system) is passed by the physician over the

tongue, down the esophagus, through the stomach and into the small

intestine so that the biopsies may be obtained .

The genes for celiac disease have not yet been identified . Some laboratories

manufacture a test to identify the Human Lymphocyte Antigen (HLA) markers

associated with celiac disease and these tests are often marketed as a definitive

way to determine if a person is at risk for developing celiac disease . However,

the presence of the HLA markers is not diagnostic of celiac disease .

Although about 95% of patients with celiac disease have these HLA

markers, a positive test is not helpful as these markers are also found

in about 30% of the general population . Therefore a positive test is not

helpful in determining whether an individual will develop celiac disease

over their lifetime . In contrast, the absence of the HLA markers makes

it very unlikely that an individual will develop celiac disease . However,

there are rare patients who do not possess the HLA markers but develop

celiac disease . Therefore, we do not recommend HLA testing at this time .

If a child experiences symptoms, we screen using the antibody tests and

proceed to endoscopy, if needed .

Diagnosis of Celiac Disease

BLOOD TEST

ENDOSCOPY

GENETIC TEST


There are several other tests for celiac disease that are currently available

such as at-home blood tests, stool tests, and saliva tests . Although these

tests are less invasive, they are not as reliable as screening with serology

and endoscopy and are not FDA approved . Therefore, our Program does

not support these testing methods .

Interestingly, some people with celiac disease are asymptomatic and

show no symptoms at all . There are certain disorders known to be

associated with celiac disease . Patients in the following groups should be

screened regardless of the presence of symptoms: Down syndrome, Type

1 diabetes, IgA deficiency, Turner syndrome and William’s syndrome .

There is a known association between Type 1 diabetes and celiac disease .

In fact, 5-10% of children with Type 1 diabetes are estimated to also have

celiac disease . Through our close collaboration with the Endocrinology

Department here at Children’s National Health System, we are diagnosing

more and more patients with both conditions .

There are additional challenges encountered by families managing

both Type 1 diabetes and celiac disease, including how to manage

carbohydrate-counting and insulin doses, while on a gluten-free diet .

Because of their higher levels of sugar and starches, many prepared

gluten-free foods have increased carbohydrate content as compared to

gluten-containing products . Therefore, patients with diabetes may find

their blood sugars running higher than normal, and they may require

subsequent adjustments to their insulin regimen . If a child is diagnosed

with both celiac disease and Type 1 diabetes, the GI provider will manage

the gastrointestinal symptoms and will provide dietary guidance on the

gluten-free diet . The patient’s endocrinologist will continue to manage

the diabetes .

Children with Down Syndrome also have an increased risk of developing

celiac disease, which is about the same as for children with Type 1

diabetes . Researchers recommend that all patients with Down Syndrome

should also be screened for celiac disease .

Other Testing Methods & Special Cases

OTHER TESTING METHODS

SPECIAL CASES FOR TESTING

TYPE 1 DIABETES

DOWN SYNDROME


Once a diagnosis of celiac disease

is made based on clinical

presentation, laboratory evaluation,

and biopsies, treatment must be started.

The good news is that no medicine or surgery

is needed to treat this condition . Food is the

medicine and the only treatment is a lifelong

gluten-free diet . This means eliminating all forms of

wheat, rye, and barley from the diet .

However, your child will still need to follow-

up routinely with your medical provider . After

initial diagnosis, we see patients for a follow-up

at six months and 12 months and then annually

thereafter if everything is going well . Of course,

if symptoms persist despite initiation of the

gluten-free diet, your child should see his or her

gastroenterologist sooner than that .

After six months on the gluten-free diet, the

gastroenterologist will most likely order repeat

celiac antibodies to evaluate response to the diet .

A normal or negative blood level while eating a

gluten-free diet confirms a positive response to

treatment . Some children may not have a complete

normalization of antibodies for a year after the

initiation of the gluten-free diet .

It is important for your child to see a gastro-

enterologist every year, even when feeling great

and even if you are comfortable with the gluten-

free diet . As time passes, if your child’s symptoms

should recur or if he/she develops new symptoms,

celiac antibodies can be checked to determine

compliance with the diet . Testing at this time is

helpful to determine the relationship between

symptoms and celiac disease since symptoms may

be due to other causes .

The follow-up visits can also be used to check for

possible abnormalities involving nutrients such as

folate, iron, and vitamins D, E, and B12 to ensure

adequate small intestinal absorption of these and

other compounds . If levels are found to be low,

supplementation can be prescribed .

If a patient needs to be seen urgently for medical

concerns related to celiac disease, our Celiac

Disease Program Coordinator is available for these

appointments . Our coordinator will work with the

primary gastroenterologist to determine a plan of

care for the patient and family . Contact information

can be found on the inside cover of this manual .

WHAT HAPPENS IF MY CHILD EATS GLUTEN?

Gluten is considered toxic to people with celiac

disease . Although someone with celiac disease

will not experience anaphylactic shock if they eat

gluten, they may experience symptoms, such as

diarrhea, severe abdominal pain, lethargy, skin

rashes, or headaches, amongst others . If a patient

normally experiences the subtler symptoms of

this condition, he/she may not experience the

more obvious symptoms of stomach complaints,

however he/she will still experience damage to

the small intestine . Such long-term damage to the

small intestine can lead to malnutrition, cancer, and

other autoimmune conditions later in their life .

It is very important to note that there is NO

medical way to stop the reaction once a person

has consumed gluten . Reaction length varies from

person to person and could last from a few hours to

several days .

The good news? Patients who strictly follow the

gluten-free diet can begin to experience relief

of symptoms in as little as one week, although

it typically takes up to six months for the small

intestine to heal in children and up to two years

to heal in adults .

Management of Celiac Disease


1 . Avoid all foods that contain wheat, barley, rye, and any derivative of

these grains. This includes many additives that manufacturers combine with

foods (please see our list of unsafe foods .) Oats may be cross-contaminated

due to factory processing and storage practices . For more information, please

see Questionable Foods on the Gluten-Free Diet Quick Guide .

2 . The major categories of foods that contain gluten include bread, cereal,

muffins, cakes, cookies, crackers, pasta, cereal, and other foods made with

wheat, barley, or rye flours .

3 . Using as many fresh, unprocessed foods as possible helps to avoid

gluten-containing products . Fruits, vegetables, many forms of dairy, and

many meats are naturally gluten-free .

4 . Use the enclosed lists of safe and unsafe foods/ingredients found

in Gluten-Free Diet Quick Guide tab .

5 . Cross contamination: Make sure surfaces, toasters, utensils, and other

equipment used to prepare foods are cleaned often and do not contain crumbs

from gluten-containing foods . Consider keeping separate toaster/appliances for

preparing gluten-free items . Please see Preventing Cross-Contamination tab .

6 . Check to make sure that any cosmetics that can touch the mouth, non-edible

products (i .e ., Play Dough), medicines, and nutrition supplements are gluten-free .

This applies to any product, such as lipstick or lip balm, that could be ingested .

7 . Be very careful when eating out . Check with restaurants ahead of time to

find out what gluten-free foods they serve and if they are able to prevent

cross-contamination from gluten-containing food items .

8 . Provide schools, teachers, friends, and family with information and

instructions on your child’s special dietary needs.

GENERAL GUIDELINES

Currently, the only recommended treatment for celiac disease is a lifelong gluten-free diet,

meaning total elimination of gluten from dietary intake.

There are some drugs in the process of FDA approval that are designed to aid the tolerance of gluten in

celiac disease patients . However, to date, none have been approved . Therefore, no marketed products for

better gluten tolerance are recommended by the Children’s National Celiac Disease Program .

The Gluten-Free Diet


Although people with celiac disease are generally focused on the

food they eat, it is important to remember that it is possible to

be exposed to gluten when taking medication. Gluten is used in

many medications as an excipient, which binds the pills together.

The excipient is considered an inactive ingredient and there are no regulations regarding labeling of inactive

substances . There are several types of excipients that drug companies may use, so it is important always to

check with the manufacturer to be sure that the particular medication you are taking is indeed gluten-free .

Additionally, the excipient could be different in a generic version of a medication, so you must check with

the manufacturer of your generic medication if your pharmacist dispenses a generic medication to you .

STARCHES FOUND IN MEDICATION:

Corn—Gluten-Free

Potato—Gluten-Free

Tapioca—Gluten-Free

Wheat—Not Safe

Modified Starch (Source Not Specified)—Not Safe

Pregelatinized Starch (Source Not Specified)—Not Safe

Pregelatinized Modified Starch (Source Not Specified)—Not Safe

Dextrimaltose (When Barley Malt Is Used)—Not Safe

Caramel Coloring (When Barley Malt Is Used)—Not Safe

Gluten in Medications

There is no regulated location to find out if a medication is gluten-free, however a clinical pharmacist

maintains www.glutenfreedrugs.com . This is the easiest way to find out if a medication is safe and the site

is updated weekly . However, please note that this list does not guarantee a product’s gluten-free status . It is

always best to double check your medication’s status with a pharmacist or with the medicine’s manufacturer .

SUPPLEMENTS

As of the printing of this handbook, the vitamins and supplements below are found to be gluten-free .

To be sure, please use caution and always read the label .

Chewable VitaminsBugs Bunny Chewables

Melaleuca Vitabears

Nature’s Plus Animal Parade

Sesame Street Complete

Twin Lab Animal Friends

Multivitamin Wafers

Twin Lab Animal Parade

MultivitaminsAll Kirkman brand

vitamins

All Nature Made products

Entire line of One-A-Day

vitamins

All VitaminShoppe brands

Nephro-Fer

Theragran

Centrum

Kids’ One Multistars

Single NutrientsAquasol A

Aquasol E

Caltrate

Citracal, Citracal

D, Citracal Liquitab

Liquid VitaminsPoly Vi Sol

Poly Vi Flor

Poly Vi Flor with Iron

Tri Vi Sol

Tri Vi Flor


Going to school while on a special diet can

mean different things to different children.

Some kids get excited about the prospect of seeing

friends again and don’t worry at all about managing a

gluten-free diet at school, while others may dread having

to talk about the condition at school . However your child

feels about having celiac disease, it’s very important to

make sure the correct steps are taken to ensure a safe

school year . Here are some potential problems and fixes .

Potential contamination sources in school cafeterias:

• Sharing food at lunch

tables

• Toaster Ovens

• Deli Slicers

• Wooden Spoons

• Utensils

• Teflon pans

• Cutting Boards

• Salad Bars/Buffets

• Condiment Containers

Solving the Problem:

Step 1 . Communicate your child’s needs to

the school nurse, cafeteria staff, and kitchen

manager .

Step 2 . Review school menus and figure out

safe items for your child to eat .

Step 3 . Develop a meal-time plan that your

child, you and the cafeteria can all manage .

If you need help educating your child’s school

and setting up protocols for safe meals at school,

please contact our Celiac Disease Program

Coordinator . Our team of nurses and dietitians

can come to your school and work with the staff

to educate them about the gluten-free diet .

1 . MY CHILD HAS CELIAC DISEASE, an autoimmune

condition that restricts his or her diet . The only treatment

is a 100% gluten-free diet, which means avoiding all

forms of wheat, rye, and barley . Gluten can also be found

in substances such as Playdoh and some glues .

2 . CELIAC DISEASE IS MORE THAN A FOOD ALLERGY.

It is detrimental to my child’s health to consume wheat,

barley, rye, and any derivatives of these products . My child

must be vigilant about his or her diet and the foods he or

she is in contact with . You can help by creating an

atmosphere of understanding and support .

3 . A SENSE OF NORMALCY. Although celiac disease

is a serious condition and may come with some

restrictions, it’s important for my child to still feel normal .

Please keep his or her school life as normal as possible

by having him or her participate in all aspects of the

classroom .

4 . BIRTHDAYS/SPECIAL EVENTS. As a

parent(s), I/we are willing to bring in special

food items or materials if we’re given

advance notice . Please notify me/us of

special events so we can plan accordingly .

5 . CLASS PRESENTATION ON CELIAC

DISEASE. If you plan to speak to the class

about my child’s condition, please speak to

me first . Talking about celiac disease is a

great way to promote understanding . I’d love

to put together a short program about this

condition that my child is comfortable with .

6 . CONTACT ME. Most importantly,

please feel free to contact me/us at anytime

if you have any questions or concerns, no

matter how trivial they may seem . We all

want the best for my child at school .

School Lunch Safety

IN THE CLASSROOM

There are several places beyond the lunch room where your child can come into contact with

gluten such as in art classes, during student birthday celebrations, and on field trips . Here are

some key messages your child’s teacher should have at the beginning of the school year .


FOOD LABELING LAWS IN THE UNITED STATES

In August 2013, the Food and Drug Administration (FDA) issued a final rule

in the United States that defines what characteristics a food must have

in order to be labeled as “gluten-free .” The rule also holds foods labeled

“without gluten,” “free of gluten” and “no gluten” to the same standard .

The FDA set the standard for food products labeled as gluten-free to

contain less than 20ppm, a level that has repeatedly been endorsed by

leading Celiac Disease experts, including Dr . Alessio Fasano of the Center

for Celiac Research at Massachusetts General Hospital for Children .

Additionally, the 20ppm level is the lowest level that can consistently

be detected in food using currently available scientific analytical tools .

The standard is also consistent with similar laws in other countries and

international bodies that determine food safety standards .

What does this mean? When looking at food labels at the grocery store, if the

product boasts the claim of being gluten-free in the United States, you’ll know

that it must contain less than 20ppm of gluten as regulated by the FDA .

Reading Food Labels

WHEAT-FREE ≠ GLUTEN-FREE

If the product

boasts the claim

of being gluten-

free in the United

States, you’ll

know that it must

contain less than

20ppm of gluten

as regulated by

the FDA.

It is important to note that wheat-free does not necessarily mean gluten-

free. A product could contain gluten in another form like rye or barley.


Dining at a restaurant is an important part of life. We go to restaurants for celebrations,

nights out with our families and sometimes just to try a fabulous new meal.

None of this need be interrupted because someone requires a gluten-free meal.

Dining at Restaurants

Below are some tips for safely dining at restaurants . Follow these steps to ensure

a safe and delicious dining experience .

7 . IT’S OK

TO LEAVE.

If a chef cannot

guarantee your food

will be gluten-free, it’s

ok to leave and go to

a different restaurant .

1 . CALL AHEAD. Before heading to a restaurant, always

call ahead and speak to a manager to find out how

knowledgeable the staff is about preparing gluten-free food

and if there are actually options on the menu for you or your

child to eat . When you call, make sure the person you speak

with notes on your reservation that you or your child

requires a gluten-free meal .

2 . SPEAK TO THE CHEF, WAITER/WAITRESS,

AND MANAGER. When you arrive at the restaurant,

you must be your own advocate .

As soon as you arrive at the restaurant, immediately ask to

speak to the manager . Remind them that you or your child

requires a gluten-free meal .

When your server comes to the table, be prepared to ask about

several items on the menu . Ask to speak to the chef directly

so that he/she can review the ingredients with you and let you

know which options are safe . The chef is the person who is

actually in the kitchen preparing the food, so speaking to this

professional is the best way to ensure a safe meal .

3 . BE PREPARED TO EDUCATE .

The chef and restaurant staff may

or may not be well-versed in gluten-free

food preparation . Here are key points to

make sure they understand:

n You cannot eat wheat, rye or barley, or

any derivatives of these ingredients.

n Any cross-contamination will make

you or your child sick. To prevent

cross-contamination, the kitchen

must take the same precautions they

take to prevent food poisoning, such

as salmonella, by cleaning surfaces,

utensils, pots, pans, etc . thoroughly .

n A little gluten in your food is NOT

ok. Ask the chef to use clean pots and

pans and not to allow your food to

come into any contact with gluten-

containing items .

4 . HAVE A PLAN

FOR ORDERING.

Have several ideas for

what you or your child

would like to eat . You

want a safe meal, so be

open to suggestions .

5 . DON’T BE AFRAID

TO ASK QUESTIONS.

It’s imperative that you and

your child feel safe . Ask as

many questions as you

need in order to feel

comfortable .

6 . SAY THANK

YOU! A little

bit of kindness goes

a long way . Always

be gracious and

thank the manager,

server, and chef .


Q: SHOULD MY OTHER CHILDREN,

MY SPOUSE AND I BE SCREENED

FOR CELIAC DISEASE?

Answer: Yes! Any 1st degree relative of someone

with celiac disease should be tested using the

celiac antibodies found on page 6 . If they have

positive antibodies, they should be referred to

a gastroenterologist for an upper endoscopy to

confirm the diagnosis .

Q: WHAT ARE THE BENEFITS OF BEING

INVOLVED IN THE CHILDREN’S NATIONAL

CELIAC DISEASE PROGRAM?

Answer: n Invitations to gluten-free dinners

n Meeting other children/teens/young adults with

celiac disease

n Referrals to other specialists including mental

health providers

n Educational opportunities for your child’s

teachers, school nurses, food service preparation

staff, etc

n Monthly updates from the newsletter

n Mentors who offer support and answer questions

Q: WHAT IS THE DIFFERENCE BETWEEN

CELIAC DISEASE AND GLUTEN

INTOLERANCE?

Answer: Scientists at the University of Maryland

Center for Celiac Research recently published

the first evidence that celiac disease and gluten

intolerance are, in fact, different conditions and

represent part of the spectrum of gluten-related

disorders .

With CELIAC DISEASE, gluten sets off an

autoimmune reaction in the small intestine . The

complex gluten protein triggers the immune

system of a person with celiac disease to attack

the patient’s small intestine . Left untreated, celiac

disease can lead to the development of other

autoimmune conditions, as well as osteoporosis,

infertility, neurological conditions, and cancer .

In contrast, GLUTEN INTOLERANCE is not

associated with the same serious complications .

The most common symptoms of gluten

intolerance include abdominal pain, fatigue,

headaches, “foggy mind” or tingling/numbness in

one’s hands or feet . The research also found that

a subgroup of schizophrenic patients and autistic

children may be affected by gluten intolerance .

Q: MY CHILD ACCIDENTALLY ATE GLUTEN.

AT WHAT POINT SHOULD I CALL

THE DOCTOR?

Answer: There is no medical way to stop a reaction

once gluten has been consumed .

People with celiac disease may experience a variety

of symptoms . This may include but is not limited

to stomaches, diarrhea, vomiting, headaches, or a

skin rash .

Try to keep your child comfortable until the gluten

has worked its way out of his or her system . This

can take a few hours or several days .

If you feel your child is experiencing abnormal or

alarming symptoms, please call your physician or

take your child to the nearest emergency room .

Alarming symptoms could include severe abdominal

pain, vomiting bile (green material), or signs of

dehydration such as below normal urine output .

Frequently Asked Questions

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