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…)

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.

• 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

Severe Eosinophilia

Superficial Layering

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