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Celiac Disease

June 15, 2010

Primary Children’s 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.

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

Prevalence1:39

Prevalence1:22

Population screened13145

Positive31

Negative4095

Positive81

Negative3155

Positive205

Negative4303

Positive33

Negative1242

Prevalence1:40

Symptomatic subjects3236

1st degree relatives4508

2nd degree relatives1275

Healthy Individuals4126

Risk Groups9019

Prevalence1:133

Projected number of celiacs in the U.S.A.: 2,115,954Actual number of known celiacs in the U.S.A.: 40,000For 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 IcebergSymptomatic

Celiac Disease

Silent Celiac Disease

Latent Celiac Disease

Genetic susceptibility: - DQ2, DQ8 Positive serology

Manifest mucosal lesion

Normal Mucosa

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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

• 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

Most common age of presentation: older child to adult

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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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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

Diagnosis

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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

FestucoideaeSubfamily

Tribe

Zizaneae Oryzeae Hordeae Aveneae Festuceaea Chlorideae

wild rice rice wheat oat finger millet teff

(ragi)

rye

barley

The Grass Family - (GRAMINEAE)

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

• Potato • Quinoa • Rice• Sorghum• Tapioca• Teff or Tef• Flours made from nuts,

beans and seeds

Gluten-Free Grains and Starches

*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

– 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)

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

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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• 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

Lactose Intolerance & Celiac Disease: Treatment

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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.

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 ClassroomFor 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 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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ResourcesGeneral• 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 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