Celiac Disease

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Celiac Disease

• June 15, 2010
• Primary Childrens Medical Center
• Margaret Braae, MHSc, RD, CD, CSP

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Definition

• Celiac disease is an inherited, lifelong
  intolerance to gluten.
• Gluten is the protein found in wheat, rye and
  barley.

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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

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Celiac Disease Epidemiological Study in USA
Population screened
13145
Healthy Individuals
Risk Groups
4126
9019
Symptomatic subjects
1st degree relatives
2nd degree relatives
3236
4508
1275
Positive
Negative
Positive
Negative
Positive
Negative
Positive
Negative
81
3155
205
4303
33
1242
31
4095
Prevalence
Prevalence
Prevalence
139
122
140
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 2003163286-292.
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The Celiac Iceberg
Symptomatic Celiac Disease
Manifest mucosal lesion
Silent Celiac Disease
Normal Mucosa
Latent Celiac Disease
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
• 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 SymptomsNon Gastrointestinal
Manifestations
Most common age of presentation older child to
adult

• Dermatitis Herpetiformis
• Dental enamel hypoplasia
• Osteopenia/Osteoporosis
• Short Stature
• Delayed Puberty/Infertility
• Peripheral Neuropathy/Ataxia
• Chronic Fatigue
• Normal weight or overweight

• 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
• 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

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Diagnosis

• Blood Test
• Endoscopy with biopsies
• Complete resolution of symptoms on a gluten-free
  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 Tribe
Festucoideae
Zizaneae Oryzeae Hordeae
Aveneae Festuceaea Chlorideae
wild rice rice wheat oat
finger millet teff
(ragi)
rye barley
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Gluten-Free Grains and Starches

• Amaranth
• Arrowroot
• Buckwheat
• Corn
• Flax
• Millet
• Montina
• Oats

• 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 2005Do
not add for at least 6-12 months after
diagnosisGo Slow Start with an oatmeal cookie
or apple crispDo not have more than 3 times a
week.Currently 5 companies produce gluten-free
oats Bobs 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 gt20ppm gluten
• The food cannot contain gt20ppm 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
• 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

• 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

• Low Iron
• Low Folate
• Low Vitamin B-12
• Low Vitamins ADEK
• Low Thiamine

• 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

• 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 AdherenceA 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
• Gloves
• Remember flour remains airborne for 24 hours
• Always wipe/wash down work surfaces thoroughly
  with Chlorox solution
• Pans try to scrub
• and dishwash

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In the Classroom

• For kids who are open about CD, continued
• Have the kid rotate through different groups.
  Present this as an opportunity.
• Celiac disease group makes gluten-free items.
• Taste and compare (e.g. roux made with wheat
  flour and rice flour).
• Enlist the help of a parent to send in some GF
  products and provide info about what is/isnt
  gluten-free.

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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

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Celiac Disease DiagnosisThe 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