Carrie Ek, RD, LDN, MBA Nutritionist, Advocate Children s Hospital
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
Celiac related diseases Type 1 diabetes Multiple Sclerosis Thyroid disease Arthritis Osteoporosis Infertility Intestinal cancer Dermatitis Herpetiformis Down syndrome Anxiety Depression Sjögren s syndrome
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."
Dermatitis Herpetiformis Poor growth
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
Treatment for Celiac = Gluten Free Diet complex diet Lots of misunderstanding and untrue information Diet is for life No cheating
Gluten-Free Foods Fruits Vegetables Plain meats Most dairy foods Potatoes Rice Corn Quinoa Eggs Most chocolate Popcorn Corn/tortilla chips Plain potato chips
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??
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
Gluten-Free Labeling Not legally regulated August 2014, voluntary labeling legal standard (will be): <20ppm
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
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)
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
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?
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
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
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
Nutrition and Food Allergies
Legally must be on label in common terms
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
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.
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
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
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
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.
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
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
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
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
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.
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?
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 )
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 10 20 minutes.
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)
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
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
Superficial Layering Severe Eosinophilia Eosinophilic Microabscess
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
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
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