Celiac Disease
June 15, 2010
Primary Children’s Medical Center
Margaret Braae, MHSc, RD, CD, CSP
1
Definition
• Celiac disease is an inherited, lifelong
intolerance to gluten.
• Gluten is the protein found in wheat, rye
and barley.
2
Why do people get Celiac
Disease?
• Genetic predisposition
• Exposure to gluten (environmental trigger)
• Another trigger, such as illness, stress, other
autoimmune disease
Occurs in people of all ages
Most common genetic disorder in N. America
and Europe
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Celiac Disease is:
• A unique autoimmune disorder because:
– both the environmental trigger (gluten) and the
autoantigen (tissue Transglutaminase) are
known
– elimination of the environmental trigger
(gluten) leads to a complete resolution of the
disease
4
Celiac Disease Epidemiological
Study in USA
Population screened
13145
Healthy Individuals
4126
Risk Groups
9019
Symptomatic subjects
3236
Positive
31
Negative
4095
Prevalence
1:133
Positive
81
Negative
3155
Prevalence
1:40
1st degree relatives
4508
Positive
205
Negative
4303
Prevalence
1:22
2nd degree relatives
1275
Positive
33
Negative
1242
Prevalence
1:39
Projected number of celiacs in the U.S.A.: 2,115,954
Actual number of known celiacs in the U.S.A.: 40,000
For each known celiac there are 53 undiagnosed patients.
A. Fasano et al., Arch Int Med 2003;163:286-292.
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The Celiac Iceberg
Symptomatic
Celiac Disease
Manifest
mucosal lesion
Silent Celiac
Disease
Latent Celiac Disease
Normal
Mucosa
Genetic susceptibility: - DQ2, DQ8
Positive serology
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Gastrointestinal Manifestations
(“Classic” or “Typical”)
Most common age of presentation: 6-24 months
But anyone with these symptoms should be
screened
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Chronic or recurrent diarrhea
Abdominal distension
Anorexia
Failure to thrive or weight loss
•
Abdominal pain
• Vomiting
• Constipation
• Irritability
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Classic Celiac Disease
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CD with Atypical Symptoms
Non Gastrointestinal Manifestations
Most common age of presentation: older child to adult
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Dermatitis Herpetiformis
Dental enamel hypoplasia
Osteopenia/Osteoporosis
Short Stature
Delayed Puberty/Infertility
Peripheral Neuropathy/Ataxia
Chronic Fatigue
Normal weight or overweight
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Iron-deficient anemia
resistant to oral Fe
Hepatitis
Arthritis
Epilepsy with occipital
calcifications
Behavioral with depression, poor
school performance, irritability
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Silent or Asymptomatic
• Treatment with a gluten-free diet is recommended for
asymptomatic children and adults with proven intestinal
changes of Celiac Disease.
• It is most commonly diagnosed in those who also have:
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–
–
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Type 1 diabetes
Selective IgA deficiency
Down syndrome
Turner syndrome
– Williams syndrome
– Autoimmune thyroiditis
– A first degree relative with
Celiac Disease
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Diagnosis
Diagnostic principles
• Confirm diagnosis before treating
– Diagnosis of Celiac Disease mandates a strict
gluten-free diet for life
• following the diet is not easy
• Quality Of Life implications
• Failure to treat has potential long term
adverse health consequences
• Increased morbidity and mortality
12
Diagnosis:
• Blood Test
• Endoscopy with biopsies
• Complete resolution of symptoms on a glutenfree diet
• Genetic testing available.
– A negative predictor. That is: Much of the
population carries the genes for celiac disease, but
not everyone gets it.
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Treatment
• Only treatment for
celiac disease is a
gluten-free diet (GFD)
– Strict, lifelong diet
– Avoid Gluten found in:
• Wheat
• Rye
• Barley
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Dietary Factors
The Grass Family - (GRAMINEAE)
Subfamily
Festucoideae
Tribe
Zizaneae
wild rice
Oryzeae
Hordeae
Aveneae
Festuceaea
rice
wheat
oat
finger millet
(ragi)
Chlorideae
teff
rye
barley
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Gluten-Free Grains and Starches
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Amaranth
Arrowroot
Buckwheat
Corn
Flax
Millet
Montina
Oats*
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Potato
Quinoa
Rice
Sorghum
Tapioca
Teff or Tef
Flours made from nuts,
beans and seeds
*most are cross-contaminated with
gluten
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What About Oats
“Recent research shows that pure uncontaminated oats used in
moderation are safe for most people with celiac disease” Gluten
Intolerance Group, Fall 2005
Do not add for at least 6-12 months after diagnosis
Go Slow: Start with an oatmeal cookie or apple crisp
Do not have more than 3 times a week.
Currently 5 companies produce gluten-free oats: Bob’s Red Mill,
Cream Hill Estates, Gifts of Nature, Gluten Free Oats, Only Oats.
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Food Allergen Labeling and
Consumer Protection Act of 2004
• After January 2006 all foods must be clearly
labeled with the top eight food allergens.
• Milk, egg, wheat, soy, fish, shellfish, peanut or
tree nut.
• Barley which can be a hidden ingredient may
still go unlabeled.
• Rye is generally not an issue
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Food Allergen Labeling and
Consumer Protection Act of 2004
FDA Gluten-free labeling must be established by
2008 (now 2010 and there is no standard)
• No prohibited grain
• No ingredient derived from a prohibited grain that has
not been processed to remove gluten
• If the food contains a prohibited grain then it cannot
contain >20ppm gluten
• The food cannot contain >20ppm gluten
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How Much Gluten is 20ppm
• 0.002% = 20mg Gluten per kilogram
• One ounce of gluten-free bread with 20ppm gluten
would have 0.57mg gluten
• How much gluten could be consumed in a day if every
grain item contained 20ppm gluten?
6 x 1 oz grain items = 3.42mg gluten
10 x 1 oz grain items = 5.7mg gluten
Is this amount of gluten safe??
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Gluten-Containing Grains to Avoid
Wheat
Bulgar
Filler
Wheat Bran
Couscous
Graham flour
Wheat Starch
Durum*
Kamut*
Wheat Germ
Einkorn*
Matzo
Flour/Meal
Barley
Emmer*
Semolina
Barley Malt/ Extract
Farro*
Spelt (Dinkel)*
Rye
Triticale
* Types of wheat
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Sources of Gluten
• OBVIOUS SOURCES
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Bread
Bagels
Cakes
Cereal
Cookies
Pasta / noodles
Pastries / pies
Rolls
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Ingredients to Question
(may contain gluten)
• Seasonings and spice blends or
mixes
• Malt/ malt extract/ flavoring
• Brown rice syrup
• Natural Flavors (most are GF)
• Soy sauce and soy solids
• Hydrolyzed Plant/Vegetable
Protein
• Bouillon
• Caramel Coloring (most is GF)
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Other Items to Consider
• Lipstick/Gloss/Balms
• Communion Wafers/Sacrament Bread
• Mouthwash/Toothpaste
• Play Dough
• Stamp and Envelope Glues (Urban
legend)
• Vitamin, Herb, and Mineral products
• Prescription or OTC Medications
(www.glutenfreedrugs.com)
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Safe Ingredients
• Starch, but only in foods
• Pure spices
• Maltodextrin
– Made from cornstarch, potato
starch, or rice starch, but not
from wheat (except for USDA)
• Vinegar and Alcohol
– Distilled vinegar and distilled
spirits are gluten-free,
however avoid malt vinegar
and malt beverages (e.g. beer)
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Common Misconceptions
• The need to avoid artificial colorings
• The need to avoid natural and artificial
flavorings
• The need to avoid modified food starch
• The need to avoid distilled vinegar
• The need to avoid all distilled liquors.
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Cross Contamination
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Growing/Harvesting/Transport/Milling of grains
Processing of food products
At the store. Avoid bulk bins
At home: No double dipping
» Separate toaster
» Flour can remain air-borne for hours
• Wash hands often.
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Potential Nutritional Complications in
Untreated and those Non-Compliant
with Celiac Disease
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Low Iron
Low Folate
Low Vitamin B-12
Low Vitamins
ADEK
• Low Thiamine
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Low Niacin
Low Calcium
Low Beta-carotene
Low Zinc
Essential Fatty
Acid Deficiency
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Nutritional Notes
• Most gluten-free grains are not enriched
• Many people consuming a gluten-free diet
do not get adequate vitamins, minerals,
and fiber
• A gluten-free multivitamin is essential.
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Lactose Intolerance & Celiac
Disease: Treatment
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Gluten free diet
Temporary lactose-reduction
Lactase enzymes/drops
Lactose-free milk
Gluten-free milk substitute
(soy milk, Pediasure, Boost)
• Supplement with calcium &
vitamin D where appropriate
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Improving Nutrient Density
• Most common grains used are
unenriched rice and corn
• Nutrient deficiencies may occur.
• Low fiber diet.
• Excess calories with weight gain
very common after diagnosis.
• Bean flours which are more
nutrient dense may lead to GI
distress if introduced rapidly.
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Dietary Adherence:
A Common Problem
• Only 50% of Americans with a chronic
illness adhere to their treatment
regimen including:
– diet
– exercise
– medication
• Dietary compliance can be the most
difficult aspect of treatment
• One 2002 study noted that 56% of celiac
disease patients were non-compliant
after seven years on the diet
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In the Classroom
• Find out privately if any of your students
have celiac disease
• For the child who does not want to be
identified:
DO NOT REQUIRE TASTING
DO NOT LINK GRADES TO TASTING
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In the Classroom
For kids who are open with Celiac Disease:
1. Gloves
2. Remember flour remains airborne for 24 hours
3. Always wipe/wash down work surfaces thoroughly
with Chlorox solution
4. Pans – try to scrub
and dishwash
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In the Classroom
For kids who are open about CD, continued:
5. Have the kid rotate through different groups. Present
this as an opportunity.
6. Celiac disease group makes gluten-free items.
7. Taste and compare (e.g. roux made with wheat flour
and rice flour).
8. Enlist the help of a parent to send in some GF
products and provide info about what is/isn’t glutenfree.
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Factors that Improve Adherence
• Up-to-date knowledge about the gluten-free diet
• Attending support group meetings
• Ability to afford gluten-free products
• Ability to break down big changes into smaller steps
• Positive coping skills
• Ability to recognize and manage mental health issues
• Trust in physicians, dietitians, teachers and other important
figures.
• Regular follow up
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Resources
General
• www.gfutah.org
Stores
• Against the Grain, Taylorsville
• Gluten Free Foods Layton
Books
• Korn, Danna; Fasano, Alessio “Living Gluten-Free For Dummies”
Newsletters
• www.clanthompson.com free newsletter – research, cooking
• www.thesavorypalate.com free newsletter – cooking tips, new products
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Prevention of Celiac Disease
• No solid food, especially gluten-containing
before 3 months of age
• Breast feed
• Introduce small amounts of gluten between 4-6
months while breast feeding continues for at
least a further 2-3 months
• Avoid Rotavirus
38
Celiac Disease Diagnosis:
The Future
• Non biopsy diagnosis
• Strategies to prevent celiac disease
• Enzyme preparations that allow gluten
ingestion
• FDA standard for Gluten-Free
• Better food labeling
• More gluten-free products
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