Carrie Ek, RD, LDN, MBA. Nutritionist, Advocate Children s Hospital

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1 Carrie Ek, RD, LDN, MBA Nutritionist, Advocate Children s Hospital

2 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

3 Celiac related diseases Type 1 diabetes Multiple Sclerosis Thyroid disease Arthritis Osteoporosis Infertility Intestinal cancer Dermatitis Herpetiformis Down syndrome Anxiety Depression Sjögren s syndrome

4 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."

5 Dermatitis Herpetiformis Poor growth

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7 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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9 Treatment for Celiac = Gluten Free Diet complex diet Lots of misunderstanding and untrue information Diet is for life No cheating

10 Gluten-Free Foods Fruits Vegetables Plain meats Most dairy foods Potatoes Rice Corn Quinoa Eggs Most chocolate Popcorn Corn/tortilla chips Plain potato chips

11 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??

12 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

13 Gluten-Free Labeling Not legally regulated August 2014, voluntary labeling legal standard (will be): <20ppm

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15 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

16 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)

17 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

18 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?

19 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

20 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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24 Pediatric Celiac Center, Advocate Children s Hospital Celiac Disease Foundation (818) Gluten Intolerance Group of North America (GIG) (253) Celiac Sprue Association/United States of America (877) American Celiac Disease Alliance Gluten-free drugs

25 Nutrition and Food Allergies

26 Legally must be on label in common terms

27 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:

28 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.

29 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

30 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

31 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

32 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.

33 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

34 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

35 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: ( Food Allergy & Anaphylaxis Network ( ) and local support groups

36 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

37 This is available for download. Parents can add their child s photo on the plan and review it with caregivers/schools. Available at: The form was adapted from J Allergy Clin Immunol 1998;102: and J Allergy Clin Immunol 2006;117:

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39 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?

40 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 )

41 EpiPen policy Managing Allergies in School - Reaction 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 minutes.

42 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)

43 Additional Resources American College of Allergy, Asthma, and Immunology Asthma & Allergy Foundation of America Food Allergy Initiative International Food Information Council Foundation School Nutrition Association

44 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

45 Superficial Layering Severe Eosinophilia Eosinophilic Microabscess

46 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

47 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

48 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,

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