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Carrie Ek, RD, LDN, MBA
Nutritionist, Advocate Children’s Hospital
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Celiac Disease • 3 million people (1:33 people)
• At least 1% of the population in U.S.
• 1:22 first degree relative
• 1:39 second degree relative
• Inherited autoimmune disease
• 6-10 years to diagnosis
• Can occur with NO symptoms
• Untreated can trigger other autoimmune diseases
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Celiac related diseases
Type 1 diabetes
Multiple Sclerosis
Thyroid disease
Arthritis
Osteoporosis
Infertility
Intestinal cancer
Dermatitis Herpetiformis
Down syndrome
Anxiety
Depression
Sjögren’s syndrome
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Symptoms of Celiac Disease
• Poor growth/short stature/weight loss
• Diarrhea
• Constipation
• Stomach upset
• Anemia
• Fatigue/irritability
• Some people have no symptoms at all. “silent celiac disease."
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Dermatitis Herpetiformis
Poor growth
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Diagnosis
1) Human Tissue Transglutaminase IgA (tTG) 2) Total Serum IgA (needs to be >20 for tTG to be valid) IgA deficiency→ EMA
Must be eating gluten for the testing to be accurate!
3)If positive still need a small bowel biopsy
HLA-DQ2 and HLA-DQ8 genetic tests
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Treatment for Celiac = Gluten Free Diet
• complex diet
• Lots of misunderstanding and untrue information
• Diet is for life
• No cheating
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Gluten-Free Foods Fruits
Vegetables
Plain meats
Most dairy foods
Potatoes
Rice
Corn
Quinoa
Eggs
Most chocolate
Popcorn
Corn/tortilla chips
Plain potato chips
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Gluten Containing Foods
• Bread, cereals, breaded foods
• Pasta
• Soy sauce (wheat fermented)
• Pretzels, crackers, cookies, cakes
• Pizza, beer, malted liquors
• Seasoning blends, soups, marinades, veggie burgers, sushi, communion wafers
• Medicines/vitamins??
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Gluten-Free Diet
• Gluten= Wheat, Rye and Barley
• Gluten= gliadins
• 2006 Food Allergen Labeling (FALCPA) : only includes major allergens=wheat.
• NOT included on label: barley/rye
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Gluten-Free Labeling
• Not legally regulated
• August 2014, voluntary labeling
• legal standard (will be): <20ppm
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Gluten-Free Label Reading
Avoid: Wheat: ingredients or in “contains”
Barley = malt
malt vinegar
malt extract
malt flavor
Rye
Oats (unless labeled gluten free)
FDA regulated foods only
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GF Label Final Rule: August 2014 Must meet <20ppm gluten standard
for cross-contamination Legal terms:
Gluten-Free
No Gluten
Free of Gluten
Without Gluten
*processed to allow this food to meet FDA
GF requirements (hydrolyzed, fermented, distilled foods)
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Gluten-Free Corn Potato Quinoa Soy Bean Rice Amaranth Millett Nut Tapioca
Gluten-Containing Barley Couscous Farro Rye Semolina Spelt most Oats Durham Triticale Wheat Graham Bulgar
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Cross Contamination
• All foods cooked separately
• Do not use same spoon to stir
• Separate toaster, colander
• Separate PB, jelly, butter
• Always use a clean plate
• Dips, serving utensils?
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Nutrition Issues with GF Diet
• To much white rice
• Low in fiber
• GF foods not enriched with B vitamins
• Need multivitamin for life
• Problem nutrients: calcium, vitamin D, B vitamins and iron
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Treatment and Monitoring
• Blood levels: tTG at set intervals
• Levels decreasing over time
• Follow-up nutrition counseling
• Growth and weight should normalize
• Multivitamin with minerals for age
• Future=maybe vaccine/medicines
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Pediatric Celiac Center, Advocate Children’s Hospital
www.advocatechildrenshospital.com/ach/care-treatment/celiac-center/
Celiac Disease Foundation www.celiac.org (818) 990-2354
Gluten Intolerance Group of North America (GIG) www.gluten.net (253) 833-6655
Celiac Sprue Association/United States of America www.csaceliacs.org
(877)272-4272 American Celiac Disease Alliance
www.americanceliac.org Gluten-free drugs
www.glutenfreedrugs.com
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Nutrition and Food Allergies
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Legally must be on label in common terms
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Food Allergy Definitions:
• Adverse Food Reaction
- Any untoward reaction to food or food
additive ingestion
• Food Allergy
- Adverse food reaction due to an
IgE mediated mechanism
Food allergy network: www.foodallergy.org
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Every allergic reaction has the possibility of developing into a life-threatening and
potentially fatal anaphylactic reaction. This can occur within minutes of exposure to the
allergen.
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Children with food allergies might communicate their symptoms in the following ways: It feels like something is poking my tongue. My tongue (or mouth) is tingling (or burning). My tongue (or mouth) itches. My tongue feels like there is hair on it. My mouth feels funny. There’s a frog in my throat; there’s something stuck in my throat. My tongue feels full (or heavy). My lips feel tight. It feels like there are bugs in there (to describe itchy ears). It (my throat) feels thick. It feels like a bump is on the back of my tongue (throat). Source: The Food Allergy & Anaphylaxis Network
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Diagnostic Techniques IgE-Mediated Food Hypersensitivity
• Prick skin tests: Positive tests are “suggestive”
- Wheal diameter 3 mm > negative control
- Positive predictive accuracy: < 50%
- Negative predictive accuracy: > 90%
• Intradermal skin tests: Too non-specific
• IgE RAST: In good lab is similar to skin test
- Positive: 3+ to 6+ in 6+ scoring system
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Allergens
• Adults
- Nuts, peanuts, fish, shellfish, eggs
• Children
- Eggs, peanuts, milk, soy, fish, wheat
• Societal eating patterns influence development of specific food hypersensitivities
– Boiled peanuts in Asian cultures,
– Lack of Peanut Consumption in Sweden
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Fatal Food Anaphylaxis
• Frequency: ~ 150 deaths / year
• History: known food allergen
• Key foods: peanuts and tree nuts dominate (~90% of fatalities), fish, crustaceans
• Most events occurred away from home
Bock SA, et al. J Allergy Clin Immunol 2001;107:191-3.
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Prevalence of Food Allergy
• Perception by public: 20-25% • Confirmed allergy (oral challenge)
• Adults: 2-3.5% • Infants/young children: 6-8%
• Specific Allergens • Dependent upon societal eating and cooking patterns
• Prevalence higher in those with: • Atopic dermatitis • Certain pollen allergies • Latex allergy
• Prevalence seems to be increasing
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Management of Food Allergy
• Complete avoidance of specific food trigger
• Ensure nutritional needs are being met
• Education
• Anaphylaxis Emergency Action Plan if applicable
– most accidental exposures occur away from home
This frozen dessert could
have peanut, tree nut,
cow’s milk, egg, wheat
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Management: Dietary Elimination
• Hidden ingredients in restaurants/homes (peanut in sauces, egg rolls)
• Labeling issues (“spices”, changes, errors)
• Cross contamination (shared equipment)
• Seeking assistance – Food allergy specialist
– Registered dietitian: (www.eatright.org)
– Food Allergy & Anaphylaxis Network (www.foodallergy.org; 800-929-4040) and local support groups
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What Schools Can Do
Create ‘‘allergy-safe” environment
Not ‘‘allergen-free” environment
• Develop school policies and protocol for management of anaphylaxis
• Emergency and Individual Health Care Plan
• Training of staff on condition, medications, and emergency plan
• Develop strategies to minimize risk of exposure
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This is available for
download. Parents
can add their child’s
photo on the plan
and review it with
caregivers/schools.
Available at:
www.aaaai.org
The form was adapted from J Allergy Clin Immunol 1998;102:173-176 and J Allergy Clin Immunol 2006;117:367-377.
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Key Questions
• What are the food allergies that cause an anaphylactic reaction?
• What was the previous reactions?
• How did the reaction occur
• How much is required?
• Does the child have asthma?
• What was the response to treatment?
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Managing Allergies at School - Prevention
Safety = Complete Avoidance STRICT no food sharing policy.
The child should wear a medic alert bracelet and the office should be provided with complete information about the allergies, e.g., foods to avoid, treatment, and emergency contact numbers.
Post the child’s photo with allergy list: In that child’s classrooms, the gymnasium and teachers lounge.
Lunch and snack time – In the classroom
• Clean desk/table policy, placemats, hand-washing & no food sharing • Letter to class parents regarding the child’s allergies - Ask for their
cooperation in reinforcing class food rules with their children.
– Outside the classroom (playground, field trips, buses, arenas etc…) • All volunteers and teachers need to be aware of the child’s allergies • Accommodations must be made when a child cannot attend a trip to
an unsafe location (ie. farm or baseball stadium etc…)
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Managing Allergies in School - Reaction
• EpiPen policy
– It is not sufficient to have an EpiPen in a cabinet or drawer in the classroom. It must be on the child whenever he/she leaves the classroom (recess, gym, bathroom, field trips etc…) – designated hanging spot for an EpiPouch to be taken when leaving the classroom.
• Illinois EpiPen guidelines-
– EpiPens should be carried at all times by a person with severe allergies, because it is not enough to have one nearby.
• In the event of a reaction:
– Administer EpiPen immediately - even mild allergy symptoms can rapidly progress to a life-threatening situation
– Call 911 • Everyone who has been treated with epinephrine must be taken to
hospital immediately for evaluation because the symptoms may recur and further injections may be required. One epinephrine shot is good for 10 – 20 minutes.
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• Ensure that emergency plans are in place for accidental ingestion of allergic foods.
• Ensure that all teachers and caregivers are aware of the potential food allergies.
• Ensure that back-up plans are in place for substitute teachers.
• Ensure that contact from food allergens is avoided (use hand washing and wipes)
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Additional Resources
American College of Allergy, Asthma, and Immunology www.allergy.mcg.edu
Asthma & Allergy Foundation of America www.aafa.org/home
Food Allergy Initiative www.foodallergyinitiative.org
International Food Information Council Foundation www.ific.org
School Nutrition Association
www.schoolnutrition.org
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What is EOE?
Eosinophilic esophagitis represents a chronic, immune/antigen-mediated esophageal disease characterized clinically by symptoms related to esophageal dysfunction and histologically by eosinophil-predominant inflammation.
Liacouras, c. et al Clin reviews allergy immunol 2012, 3-20
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Severe Eosinophilia
Superficial Layering
Eosinophilic Microabscess
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EOE Diagnosis
• >15 eosiniphils/hpf (peak value) in esophageal biopsy
• Exclusion of GERD
• Isolated to the esophagus
• Should remit with diet therapy and/or topical corticosteriods or both
Liacouras, c. et al Clin reviews allergy immunol 2012, 3-20
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Nutrition Approaches EOE
1) Elemental diet = Neocate or Elecare
2) Directed elimination diet based on allergy test results
3) Six food elimination diet: No: dairy soy wheat
egg peanut/tree nuts
fish/shellfish
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Diet Therapy Remission Comparison
• Elemental diet: 96%
• 6 food elimination diet: 81%
• Directed elimination diet: 65%
Henderson, C., et al J Allergy Clin Immunol 2012, 1570-1578
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