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Cynthia Kupper, RDGluten Intolerance Group of NA

Cynthia.Kupper@Gluten.net

� Approaches to DX of CD and NCGS

� Symptoms and lab values indicative of CD or NCGS

� Implementation of:◦ a healthful and safe GFD - food choices & meal planning

� potential nutrient deficiencies

◦ cross contamination issues

◦ label update

◦ GF product update

The Oslo definitions for coeliac disease and related termsThe Oslo definitions for coeliac disease and related termsThe Oslo definitions for coeliac disease and related termsThe Oslo definitions for coeliac disease and related terms

Gut2013;62:43-52 doi:10.1136/gutjnl-2011-301346Original publication Jan 2012

� Celiac disease� Asymptomatic CD

� Classical CD

� Pediatric Classical CD

� Non-classical� Potential CD

� Refractory CD

� Subclinical CD

� Symptomatic CD

� CD autoimmunity� Genetically at risk of CD

� Dermatitis Herpetiformis

� Gluten � Gluten Ataxia

� Non-celiac gluten sensitivity

� Gliadin-specific antibodies

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� Sprue, celiac sprue, non-tropical sprue, gluten-sensitivity enteropathy, gluten intolerance, idiopathic steatorrhea

� Overt CD

• Atypical CD

• Latent CD

• Typical CD

• Gluten Intolerance

• Gluten Sensitivity

• Silent CD

• CD Serology

� Celiac disease Celiac disease Celiac disease Celiac disease (CD) - chronic small intestinal immune-mediated enteropathy from exposure to dietary gluten in genetically predisposed people.

◦ triggered by the ingestion of gluten

◦ variable degree of intestinal damage

◦ enteropathy reverse on a GFD

� NonNonNonNon----classicalclassicalclassicalclassical – w/o signs and symptoms of malabsorption.

� SymptomaticSymptomaticSymptomaticSymptomatic - clinically evident GI and/or extra-intestinal symptoms attributable to gluten intake.

� RefractoryRefractoryRefractoryRefractory (RCD) -persistent or recurrent malabsorptive symptoms and signs with villous atrophy (VA) despite a strict GFD for more than 12>months. Classified as type l or ll

CDCDCDCD� Asymptomatic Asymptomatic Asymptomatic Asymptomatic - not accompanied by symptoms

� Classical Classical Classical Classical – Adults: w/ signs and symptoms of Diarrhea, malabsorption, steatorrhea, weight loss or growth failure is required.

� Pediatric - failure to thrive, diarrhea, muscle wasting, poor appetite & abdominal distension. May include signs of emotional distress (‘change of mood’) and lethargy.

� Potential CD Potential CD Potential CD Potential CD - persons w/ a nl small intestinal mucosa & at increased risk of developing CD as indicated by positive CD serology

� GlutenGlutenGlutenGluten –water insoluble proteins from wheat, rye, and barley (but not oats)◦ broad group of prolamins(gliadin and glutenins)

� CD autoimmunity CD autoimmunity CD autoimmunity CD autoimmunity -increased TTG or EMA on at least two occasions when status of the biopsy is not known. ◦ biopsy is positive = CD◦ biopsy is negative = potential CD

� Genetically at risk of Genetically at risk of Genetically at risk of Genetically at risk of CD CD CD CD - family members of persons with CD that test positive for HLA DQ2 and/or DQ8◦ Risk varies between 2-20%� Degree family member � # copies of HLA-DQ2 genes

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� GlutenGlutenGlutenGluten----related related related related disorders disorders disorders disorders - all conditions related to gluten◦ CD

◦ NCGS

◦ DH

◦ Gluten Ataxia

� NCGSNCGSNCGSNCGS - a variety of immunological, morphological or symptomatic manifestations precipitated by gluten in absence of CD

An estimated 3 million people (1 in 133 people)have Celiac Disease in the US

An estimated 17 million have Non Celiac Gluten Sensitivity

(6 to 7 times higher than CD)

(15% of US population is estimated to have IBS)

Celiac Disease is the most common under-diagnosed GI disorder

� Diagnosis takes an average of 4.5 years

� Average age at diagnosis: 4th or 5th decade of life

� Risk of developing other autoimmune conditions increases

with delayed diagnosis

� Many are asymptomatic until diagnosed with another condition

� Estimated 95% of CD cases are undiagnosed

Auto-ImmuneNot auto-immune or

allergy. Possibly

Immune – mediated.

Not yet clearly defined.

Celiac Disease

Non Celiac

Gluten Sensitivity

Reaction to Glutento Glutento Glutento Gluten

Wheat AllergyDermatitis

Herpetiformis

Refractory

Sprue

Allergy

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� Gluten is resistant to the digestive and pancreatic enzymes which usually break down proteins into small amino acid molecules for easy absorption.

� Remaining long peptide chains are harmful to those with gluten intolerances and destroy the lining of the small intestine in Celiac Disease and Dermatitis Herpetiformis.

� In Non Celiac Gluten Sensitivity, intestinal lining is not destroyed, but some intestinal inflammation/reaction may occur.

CELIAC DISEASENON CELIAC GLUTEN

SENSITIVITYWHEAT ALLERGY

no villous atrophyclassic allergic

response

villous atrophy

� Hives

� Swollen Lips

� Swollen Tongue

� Contact Dermatitis

� Itchiness

� Respiratory Effects

�Anaphylaxis

GLUTEN RELATED DISORDERS

� Diarrhea/Constipation

� Weight Loss/Weight Gain

� Gas/Bloating/Distention

�Abdominal Pain

� Chronic Fatigue

� Neurological problems

DERMATITIS HERPETIFORMIS

skin rash

mild to no GI reaction

� Itching

� Burning

� Blisters

� Digestive� Immune� Endocrine� Lymphatic� Musculoskeletal� Circulatory

� Nervous� Respiratory� Reproductive � Neurological� Urinary� Skin� Eye

� Diarrhea/Constipation

� Weight Loss/Gain

� Abdominal Pain

� Gas/Bloating/Distention

� Failure to Thrive (children)

� Chronic Fatigue/Pain

� Chronic Inflammation

� Malabsorption

� Heartburn/GERD

� Dental Enamel Defects

� Infertility

� Neurological Problems

� Headaches/Migraines

� Hypoglycemia

� Eczema

� Mental Fogginess

� Anemia (Iron or B12)

� Low Bone Density

� Frequent Illnesses

� Itchy skin

� Miscarriages

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Test for antibody against the gliadin portion of the gluten protein. Not sensitive enough in adults to be used as a primary diagnostic; used for very young children. Indicates reaction to gluten.

AntiAntiAntiAnti----Gliadin Antibody Gliadin Antibody Gliadin Antibody Gliadin Antibody (AGA-IgA/IgG)

Test for antibodies which attack the tissue transglutaminase enzyme responsible for repairing damage to the intestinal tract. Very specific for celiac disease.

AntiAntiAntiAnti----TissueTissueTissueTissueTransglutaminaseTransglutaminaseTransglutaminaseTransglutaminaseAntibody Antibody Antibody Antibody (tTG-IgA/IgG)

Test for antibodies which attack endomysiumtissue that lines the intestinal tract. Very specific for celiac disease.

AntiAntiAntiAnti----EndomysialEndomysialEndomysialEndomysialAntibody Antibody Antibody Antibody (EMA-IgA/IgG)

Used when tTG or EMA is negative and in cases of IgA deficiency.

AntiAntiAntiAnti----DeaminatedDeaminatedDeaminatedDeaminatedGliadin Gliadin Gliadin Gliadin (DGP-IgA/IgG)

Total IgA Total IgA Total IgA Total IgA Test to determine IgA deficiency. If IgA deficient,diagnosis dependent on IgG results.

Genetic MarkersGenetic MarkersGenetic MarkersGenetic Markers Two genes associated with celiac disease: HLA-DQ2 and HLA-DQ8, indicate genetic susceptibility. Negative result rules out CD for life; positive results not conclusive.

Small Intestine BiopsySmall Intestine BiopsySmall Intestine BiopsySmall Intestine Biopsy Tissue biopsy of the small intestine to determine villous atrophy. Very specific for celiac disease. Final required step to diagnose CD.

AllergenAllergenAllergenAllergen----specific specific specific specific Measures the amount of allergen-specificAntibody (IgE)Antibody (IgE)Antibody (IgE)Antibody (IgE) immunoglobulin E in the blood. Detects

allergy to a particular substance such as wheat. Not relevant for celiac disease.

Skin Skin Skin Skin BiopsyBiopsyBiopsyBiopsy Tissue biopsy on clear area of skin around the blister for evaluating IgA deposits to determine diagnosis of Dermatitis Herpetiformis.

Diagnosing Non Celiac Gluten Sensitivity

• Antibody tests and intestinal biopsy to rule out celiac disease

• Negative wheat allergy tests

• Gluten-Free diet results in improvement

• Return of gluten to diet causes return of symptoms

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CELIAC DISEASENON CELIAC GLUTEN

SENSITIVITYWHEAT ALLERGY

•AGA-IgA/IgG•Elimination Diet•Rule out other conditions

•RAST (IgE, IgG, IgM)•Placebo challenge (double-blind)•Skin prick test

•tTG-IgA/IgG•EMA-IgA/IgG•Deaminated EMA•Small intestine biopsy•Genetic testing

GLUTEN RELATED DISORDERS

DERMATITIS HERPETIFORMIS

•Skin biopsy

CELIAC DISEASECELIAC DISEASECELIAC DISEASECELIAC DISEASENON CELIAC NON CELIAC NON CELIAC NON CELIAC NON CELIAC NON CELIAC NON CELIAC NON CELIAC GLUTEN GLUTEN GLUTEN GLUTEN

SENSITIVITYSENSITIVITYSENSITIVITYSENSITIVITYWHEAT ALLERGYWHEAT ALLERGYWHEAT ALLERGYWHEAT ALLERGY

GLUTEN RELATED DISORDERSGLUTEN RELATED DISORDERSGLUTEN RELATED DISORDERSGLUTEN RELATED DISORDERS

DERMATITIS DERMATITIS DERMATITIS DERMATITIS HERPETIFORMISHERPETIFORMISHERPETIFORMISHERPETIFORMIS

Recommended Lab Work (as advised by physician) may include:

Antibody Retesting, Complete Blood Count (CBC), Liver Function Tests (LFT), B12,

Vitamin D, Folate, Urinalysis, Fasting Blood Sugar (FBS), Thyroid Function, Bone Density

Strict, lifelong avoidance of glutenAvoid wheat Avoid gluten

� Addison’s Disease

� Autoimmune Hepatitis

� Type 1 Diabetes

� Myasthenia Gravis

� Pernicious Anemia

� Raynaud’s Phenomenon

� Scleroderma

� Sjogren Syndrome

� Systemic Lupus Erythematosus

� Thyroid Disease

� Grave’s Disease

� Hashimoto’s Disease

� Other food intolerances

� Irritable Bowel Syndrome

� Gastroesophageal Reflux Disease

� Rheumatoid Arthritis

� Malabsorption/Nutrient Deficiencies

� Infertility – Male/Female

� Neurological Problems

� Primary Biliary Cirrhosis

� Psoriasis

� Alopecia Areata

� Cardiomyopathy

� Sarcoidosis

� Osteoporosis/Osteopenia

� Restless Leg Syndrome

Treatment for Gluten Related Disorders

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GLUTEN LIKELY PRESENTGLUTEN LIKELY PRESENTGLUTEN LIKELY PRESENTGLUTEN LIKELY PRESENT� Breads, cereals and pastas

� Cakes, cookies, pastries� Crackers and snack foods

� Fast food meals � Instant meals� Beer and ales

SAFESAFESAFESAFE� Fresh foods: vegetables, fruits, meats, eggs, beans

� Potatoes, rice, corn� Milk and cheeses� Butter, oils, margarine, nuts, and other fats

� Spices & herbs � Wine and distilled spirits

• Amaranth

• Buckwheat• Millet• Rice• Corn• Sorghum• Teff• Oats*• Quinoa

• Potato

• Soy

• Tapioca • Arrowroot

• Garbanzo and other

bean flours• Indian rice grass/

Wild rice

• Nut flours

*Oats

� Studies indicate safe for consumption by the vast majority of persons with Celiac Disease.

� Use of oats increases intake of iron, dietary fiber, thiamin and zinc.

� Limit to approximately 1/2 cup dry oats/day.

� Biggest concern is cross-contamination.

� Use only pure, uncontaminated certified gluten-free oats.

� Consult with physician if concerns or issues.

On the Gluten-Free Diet

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�Calories

�Protein

�Fiber

�Iron

�Vitamin K

�Calcium

�Vitamin D

�Zinc

�Magnesium

�B Vitamins

(folate, niacin, riboflavin, B12)

FiberFiberFiberFiber IronIronIronIron CalciumCalciumCalciumCalciumBBBB

VVVVitaminsitaminsitaminsitamins

LowerLowerLowerLowerGlycemicGlycemicGlycemicGlycemicIndexIndexIndexIndex

Amaranth x x x x x

Beans/Legumes x x x

Buckwheat x x x x

Indian Rice Grass x x x x

Mesquite x x

Millet x

Nut Flours x x x x

Quinoa x x x x

Sorghum x

Teff x x x

•Shop parameter

•Choose minimally processed foods

•Consume whole or enriched GF grains and products

•Include plenty of colorful produce at every meal

•Eat more fresh, raw foods

•Cook in volume and freeze

•Use GF specialty foods in moderation

� Fresh produce: naturally gluten-free and very nutritious

� Ethnic cuisines, dishes and flavors: many Mexican, Indian and Asian foods are naturally gluten- free: corn tortillas, salsas, lentil and vegetable curries, stir fries (confirm use of GF soy sauce)

� Explore new grains and flours

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PastaPastaPastaPasta Brown rice pasta, white rice, or bean thread noodles; (other gluten-free pastas, e.g. corn/quinoa)

Breads Breads Breads Breads Corn tortillas, brown rice tortillas, rice/corn cakes

Cereal Cereal Cereal Cereal Hot/cold cereals made from rice, corn, chia seeds, buckwheat,, gluten-free oats, etc.

DessertDessertDessertDessert Chocolate, candies, fruits, sherbets, ice cream, pudding, gelatin, meringues, crème brulee

Food Allergens and Gluten

� Food and Drug Administration (FDA)

� US Department of Agriculture (USDA)

� Alcohol and Tobacco Tax and Trade Bureau (TTB)

� Primary responsibility for the safety of meat, poultry and certain egg products

� USDA inspects all meat, poultry and egg products sold in interstate commerce

� Re-inspects imported meat, poultry and egg products - to meet U.S. safety standards

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� Regulates foods other than the meat and poultry products regulated by the USDA

� Responsible for the safety of drugs, medical devices, biologics, animal feed and drugs, cosmetics, and radiation emitting devices.

� Authority to inspect large commercial egg farms

� Regulates GF Beer

1) Look for GF Symbol�Product is regularly tested

2) Look for Contains statement�Usually at bottom of ingredients list

3) Look for anything in ingredients list�Will use readily recognizable terms

4) Regulatory body?�FDA, USDA

5) Does it contain any of the USDA extra items (food starch, dextrin)?

Voluntary Advisory StatementsVoluntary Advisory StatementsVoluntary Advisory StatementsVoluntary Advisory Statements

◦ “Processed in a plant with/on the same equipment as…”

◦ “May contain traces of…”

CAUTION:CAUTION:CAUTION:CAUTION:1) Not an allergen statement2) Vague nature of statements is confusing

� Cleaning important � Clean hand� Clean clothing/aprons� Clean surfaces

Sanitizing Sanitizing Sanitizing Sanitizing does not kill glutendoes not kill glutendoes not kill glutendoes not kill gluten

� Store foods using allergen control◦ Non-allergens up; Allergens down◦ Segregation

� Create contact barriers� Avoid hard-to-clean utensils� Consider squeeze containers

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•Have a dedicated GF toaster

•Use pourable/squeezable condiments to avoid risk of “double dipping” or have dedicated condiments for “GF” use only

•Store GF foods on separate refrigerator and pantry shelves

� Few medications contain gluten, but it can exist as a filler. ◦ Exception may be herbal supplements

� No labeling requirements for medications. Source of ingredients must be verified.

� Good resource: www.glutenfreedrugs.com

� Skincare products: Gluten is not absorbed through the skin. However, avoid gluten-containing shampoo and lotion for kids, since some may unknowingly be ingested.

GlutenGlutenGlutenGluten----Free ProductsFree ProductsFree ProductsFree Products

• Certified GF products –standard twice as strict as FDA

• GF products – increasing enrichment and use of healthier grains

• Product profiles improving

• Starting to find shelf-stable breads

• GF is an $13- 16 billion industry

• Continuing to see improvements in products but not price

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�Focus on foods that Can be eaten

�One step at a time

�Plan ahead – menus, shopping trips, dining out

�A knowledgeable RD is important

�Utilize a support groups

�Visit www.gluten.net

Supporting Success