Susan Algert, PhD, RD
Nutrition Advisor
University of California Cooperative Extension
Santa Clara County

• What is gluten, who needs to avoid it, and why?
• Where is gluten found in goods, beverages, cosmetics and medications?
• Which WIC foods can be consumed by gluten sensitive participants
• Which gluten free foods are most nutritious?

• Update on celiac disease and gluten intolerance
• The gluten free diet including nutrition tips
• Labeling of gluten free products

• Gluten free WIC foods
• Evaluating gluten free foods on nutrition, taste and value
• Claims of other benefits of a gluten free diet

Celiac Disease: Definition
Normal Celiac Disease
• autoimmune-mediated enteropathy
• caused by ingestion of gluten
• genetically susceptible individuals (high risk groups)
• lifelong disease
Symptoms occur in and out of the GI tract, IF THEY OCCUR AT ALL!!

Celiac Disease: How common is it?
A.
B.
C.
D.
E.
1 in 100,000
1 in 10,000-15,000
1 in 4,000-5,000
1 in 100-200
1 in 10-20

Celiac Disease: How common is it?
A.
B.
C.
D.
E.
1 in 100,000
1 in 10,000-15,000
1 in 4,000-5,000
1 in 100-200
1 in 10-20
In the United States, in the mid-90’s

Celiac Disease: How common is it?
A.
B.
C.
D.
E.
1 in 100,000
1 in 10,000-15,000
1 in 4,000-5,000
1 in 100-200!!
1 in 10-20

Celiac Disease Epidemiological
Study in USA
Healthy Individuals
4126
Positive
31
Population screened
13145
Symptomatic subjects
3236
Risk Groups
9019
1st degree relatives
4508
2nd degree relatives
1275
Positive
81
Negative
3155
Positive
205
Negative
4303
Positive
33
Negative
1242
Negative
4095
Prevalence
1:133
Prevalence
1:40
Prevalence
1:22
Prevalence
1:39
Projected number of celiacs in the U.S.A.: 2,115,954
Actual number of known celiacs in the U.S.A.: 40,000
For each known celiac there are 53 undiagnosed patients.
A. Fasano et al., Arch Int Med 2003;163:286-292.

Celiac Disease Epidemiological
Study in USA
Healthy Individuals
4126
Positive
31
Population screened
13145
Symptomatic subjects
3236
Risk Groups
9019
1st degree relatives
4508
2nd degree relatives
1275
Positive
81
Negative
3155
Positive
205
Negative
4303
Positive
33
Negative
1242
Negative
4095
Prevalence
1:133
Prevalence
1:40
Prevalence
1:22
Prevalence
1:39
Projected number of celiacs in the U.S.A.: 2,115,954
Actual number of known celiacs in the U.S.A.: 40,000
For each known celiac there are 53 undiagnosed patients.
A. Fasano et al., Arch Int Med 2003;163:286-292.

Celiac Disease Epidemiological
Study in USA
Healthy Individuals
4126
Positive
31
Population screened
13145
Symptomatic subjects
3236
Risk Groups
9019
1st degree relatives
4508
2nd degree relatives
1275
Positive
81
Negative
3155
Positive
205
Negative
4303
Positive
33
Negative
1242
Negative
4095
Prevalence
1:133
Prevalence
1:40
Prevalence
1:22
Prevalence
1:39
Projected number of celiacs in the U.S.A.: 2,115,954
Actual number of known celiacs in the U.S.A.: 40,000
For each known celiac there are 53 undiagnosed patients.
A. Fasano et al., Arch Int Med 2003;163:286-292.

Non-Celiac Gluten Sensitivity:
How common is it?
• 17 million Americans? About 5-6% of the population
• Official data not available
• Heterogeneous syndrome with treatment of underlying pathways
• No damage to the small intestine

Celiac Disease - What causes it?
Necessary
Factors
Gluten Genetics
Pathogenesis
?
Gender
Infant feeding
Infections
Others
Risk
Factors
NASPGHAN/CDHNF
Celiac disease

Family
Subfamily
Grains that Contain “Gluten”
Gramineae
Pooideae Bambusoideae Panicoideae Chloridoideae
Tribe Triticeae Aveneae Oryzeae Andropogoneae Paniceae Cynodonteae
Genus Triticum Secale Hordeum Avena Oryza Zea Sorghum Pennisetum Eragrostis
Wheat Rye Barley Oats Rice Maize Sorghum Millet Tef

• Activation of the innate immune system
• No damage to the small intestine
• Underlying pathways or causes not well understood

Dietary Factors“Gluten”
• ‘Gluten’ is the all-encompassing term for toxic proteins in celiac disease
• Wheat - (15% protein, 75% starch)
Gluten
Gliadin
(alcohol soluble)
Prolamin
Glutenin
(alcohol insoluble)
• Rye prolamines - secalins
• Barley prolamines - hordeins

Gluten: Seemingly Everywhere
“ I have decided that next to air, water, and dirt, the next most common substance on the planet must be gluten .”
 -Toni Nolte, Overland Park, Kansas extracted from Kids with Celiac Disease- Dana Korn

Gluten: Seemingly Everywhere
HUMANS EVOLVED TO EAT MEAT, NOT WHEAT,
AND NO ONE CAN DIGEST GLUTEN…
…BUT NOT EVERYONE GETS CELIAC DISEASE

• Selected because of agricultural resiliency
• Chemical structure with ideal baking properties
• High in glutamine and proline- immunodominant epitopes, but no specific peptide activates disease in all patients
• Proline forms helices resistant to digestion in in the mammalian lumen
• Glutamines can cross-link to give grain resiliency, and the ‘glue’ or gluten that gives bread its shape

Role of Tissue Transglutaminase (TTG)
• Normal gut enzyme
• Released by fibroblasts during injury
• Role in Celiac Disease:
– Modification of gliadin epitopes
• TTG deamidates glutamine residues to glutamic acid
• Deamidation results in higher binding affinity to HLA
DQ2/8 molecule on the surface of antigen-presenting cells
– Autoantibodies against TTG correlate with active
Celiac Disease - ? involved in pathogenesis

The Role of Environmental Factors in Celiac Disease Pathogenesis***
• Breast feeding reduces the risk of celiac disease and/or at least delays its onset.
• Introducing gluten at less than 4 months of age is associated with an increased risk of celiac disease.
• To reduce risk of celiac disease, gluten should be introduced in small amounts.
• Certain intestinal infections – especially by Rotavirus – increase the risk of developing celiac disease.
*** very active area of cooperative research

‘Classic’ Presentation of Celiac Disease
• Starts around 6 - 24 months old, after gluten introduced into diet
• “Malabsorption” Symptoms
– Diarrhea
– Vomiting
– Abdominal pain
– Loss of appetite
– Failure to thrive
– Irritability
CDHNF/NASPGHAN

THE CELIAC ICEBERG
CLASSIC
ATYPICAL
SILENT
LATENT

THE CELIAC ICEBERG
CLASSIC
ATYPICAL
SILENT
LATENT

Celiac Disease Presentation is Changing:
• ATYPICAL (non-gastronintestinal symptoms) are becoming more TYPICAL
• Nowadays, celiac disease presenting as the classic malabsorption syndrome is more of an exception, not the rule, in both children and in adults
• 143 children dx w/ CD 1986-2003
@ Children’s Hospital Wisconsin
• More likely to have non-gastrointestinal sx, unless less than 4 yo
• 11% of children obese
Telega et.al. Arch Ped Adoles Med. 2008; 162 (2) 164-168

Non-gastrointestinal Manifestations of
Celiac Disease
MOUTH - dental enamel defects, apthous ulceration
GROWTH - short stature
DEVELOPMENT - delayed puberty
MUSCULOSKELETAL – osteopenia, arthritis
CDHNF/NASPGHAN
NEUROLOGIC/PSYCHIATRIC - headaches, ADHD , depression
SKIN - dermatitis herpetiformis
LIVER - inflammation of liver zdsolutions.it
CDHNF/NASPGHAN
BLOOD - iron deficiency anemia (resistant to iron)
CDHNF/NASPGHAN CDHNF/NASPGHAN vitalsigns-health.co.uk

‘ Silent Celiac Disease’ X
• No or minimal symptoms, positive serology, and
“damaged” mucosa
• Often found in populations at high risk for celiac disease
– Close relatives of people with celiac disease
– Other conditions associated with celiac disease
• Type 1 diabetes mellitus (8%)
• Autoimmune thyroid disease
– Other syndromes associated with celiac disease
• Down syndrome (5-12%)
• Selective IgA deficiency (1.7-7.7%)

Celiac Disease ‘ Masquerade ’
• Patients often receive other diagnoses to explain their symptoms before being diagnosed with Celiac Disease
• The average delay until diagnosis is 11.7 years
The Canadian Celiac Health Survey Dig Dis Sci 2007Apr; 52 (4) 1087-95

Who may have celiac disease?
(Who should be screened?)
• Patients with persistent GI symptoms
• Patients with non-intestinal symptoms of celiac disease
• Patients in high risk groups

Complications of Celiac Disease
• Malnutrition
• Short Stature
• Dermatitis herpetiformis
• Dental enamel hypoplasia
• Fertility problems
• Osteoporosis
• Gluten ataxia and other neurological disturbances
• Refractory celiac disease
• Intestinal lymphoma
Mortality rate in patients with untreated celiac disease is TWO FOLD
GREATER at every age (gastrointestinal malignancies)
MOST CAN BE PREVENTED/REVERSED WITH EARLY
DIAGNOSIS AND INITIATION OF GLUTEN-FREE-DIET!
Corrao et.al; Lancet vol 358; 2001

Celiac Disease: How do you diagnose it?
‘‘The most important diagnostic test in CD is the suspicion of the disease.’’
NIH consensus 2004

MARSH
Small Intestine
Normal Celiac

After the Diagnosis :
Celiac Disease Treatment
“ I was standing there with my orange juice and bagel and the doctor said, ‘I’ve got good news and bad news. That’s your last bagel, but I know what’s wrong with you’.”
- Heather, 43
(extracted from Celiac Disease: A Hidden Epidemic, Peter H.R. Green and Rory Jones)

Oral gluten challenge test:
• Double blind placebo controlled has highest diagnostic accuracy but expensive and time consuming
• Single blind placebo controlled
• Open challenge

Celiac Disease and gluten sensitivity
Treatment:
• Only treatment is a gluten free diet (GFD)
• Celiac: S trict, lifelong diet
• Gluten Sensitivity: Remove gluten as much as possible to avoid symptoms
– Avoid:
• Wheat
• Rye
• Barley

Management of CELIAC Disease
L
I
C
E
A
C
= C onsultation with a skilled dietitian
= E ducation about celiac disease
= L ifelong adherence to GF diet
= I dentification/treatment of nutritional deficiencies
= A dvocacy group
= C ontinuous long-term follow-up
NIH Consensus Development Conference Statement, 2004

• Remove gluten from the diet
• Can reintroduce gluten to see if symptoms return
• Spectrum of individuals with gluten sensitivity
• Focus on treatment of underlying cause

ADA Evidence based guidelines for
Medical Nutrition Therapy for CD www.adaevidencelibrary.com
• Assessment of food/nutrition related history
• Assess biochemical data and results of medical procedures
• Instruction in the GF diet
• Monitoring and evaluation of dietary compliance www.adaevidence library.com

• Gluten free dietary pattern
• Consumption of whole/enriched GF grains and products
• Addition of vitamin and mineral supplement
• Inclusion of GF oats as tolerated
• Calcium/vitamin D for reduced bone density
• Iron supplementation for iron deficiency anemia

• Provide resources and education for label reading
• Coordination of care
• Education on food cross contamination

Follow-up and monitoring for compliance
• Dietary compliance—food record, food label quiz, expert dietitian evaluation
• Monitoring and evaluation of factors affecting quality of life
• Monitoring and evaluation of gastrointestinal symptoms

What to expect after celiac disease diagnosis is made?
• IF gluten-free diet is adhered to, complications can be
DECREASED / PREVENTED!!
worsening manifestations of celiac disease
DECREASE increased risk of
GI cancers infertility/miscarriages refractory celiac disease

Instructing patients in the gluten-free diet
• What is celiac disease and importance of GFD
• Sources of gluten in the diet and otherwise obvious--foods hidden —1) packaged foods, 2) medications, supplements, other not so well known sources
3) cross contamination 4) dining out
• Nutrition—1) replacing key nutrients
2) balancing intake

Gluten is the Popular Name for Proteins that are Present in Certain Dietary Grains
Grain Scientific Name - Prolamins
WHEAT
BARLEY
GLUTEN
Consists of a mixture of
GLIADINS & GLUTENINS
HORDEINS
RYE SECALINS

Principle #1 —Remove gluten
Obvious Sources
• OBVIOUS SOURCES
– Bread
– Bagels
– Cakes
– Cereal
– Cookies
– Pasta / noodles
– Pastries / pies
– Rolls
CDHNF / NASPGHAN

Gluten - Potential Sources
• Blue cheese (crumbles)
• Beer
• Broth or bouillon
• Candy
• Chocolates
• Communion wafers
• French fries
• Herbal teas
• Ice cream
• Vegetarian burgers
• Licorice
• Malt vinegar
• Maltodextrin (from wheat starch)
• Medications
• Flavored Nuts
• Puddings
• Salad dressings
• Rice mixes
• Seasonings
• Soy sauce

Examples:
Foods to watch for hidden gluten!
Imitation seafood Licorice
Cold cuts Flavored chips & nuts

An Example: Gluten-Free Bread
•
• One slice of bread is approximately
28 grams or 1 oz.
• To be considered gluten-free , a slice of bread must contain 0.6 micrograms or less of gluten.
A person would need to eat more than 20 slices of gluten-free bread that contained 20 ppm of gluten to get too much gluten.
Gluten-free bread

What is 20 ppm or 20 micrograms?
• One slice of bread is approximately
28 grams or 1 oz
• 560 micrograms or .6 milligrams per slice of bread
• 1000 microgms=
1 milligram

Examples of breakfast foods with GF grains

Nutritious grains .
• Use enriched products to make up for lost iron and B vitamins
• Buckwheat, millet, amaranth, quinoa, teff

Principle #2
Avoid gluten cross-contamination .
Source of very small amounts of gluten for most people:
• eating out, food contaminated with gluten or mislabeled foods
• Minimize contact at home of gluten containing and gluten free foods

Principle #3
Choose only gluten-free restaurant menu items .
• Cross-contamination can easily occur in most restaurants
Example: Oil used to fry gluten-containing items later used to fry gluten-free items.

Principle #4
Eat only uncontaminated oats .
• Not all oats can or should be labeled gluten-free.
• Same guidelines for oats as for other processed gluten-free grains and starches.
• Buy from companies who test for less than
20 ppm gluten.

#5--Eat a well-balanced diet rich in vitamins & minerals —
A natural GF diet is not processed!
Target nutrients:
• Iron
• B vitamins
• Fiber
• Magnesium
• Calcium
• Healthy fat such as omega-three fatty acids

• Natural GF diet shop the periphery of the store
• No need nutritionally for processed GF foods
• $2.3 billion dollar industry in 2010; double from
2006
• Market research has shown that high proportion of consumers perceive GF foods as “generally healthier”

2006 Food Allergen Labeling and
Consumer Protection Act (FALCPA)
Must be on labels:
• Are any of the 8 main food allergens contained in a product
• Main food allergens: milk, egg, peanuts, tree nuts, fish, shellfish, soy and wheat
• Barley, rye and malt can contain gluten but are not listed as allergens.

• Testing samples of foods labeled gluten-free
• Inspecting facilities where gluten-free foods are made
• Reviewing labels to make sure listed ingredients are gluten-free

Snack chips with correct labeling

• Rice Krispies
• Cool Ranch Tortilla Chips
• BBQ flavored chicken
• Buckwheat Cereal
• Oatmeal

• Multivitamin and mineral including B vitamins, magnesium, zinc, chromium
• Calcium
• Omega-three fatty acids from fish oil
• Vitamin D

Gluten-Free Retail Products
• Gluten-Free (GF) is becoming MAINSTREAM
– GF food industry: >25% growth annually ($700 million in 2006)
– Expected to top $1 billion by 2010
• Labeling Laws improving
• Many local resources
– Natural food market (some have lists of all GF products)
– Specialty bakeries
– Restaurants: many offer GF entrees
Denver Metro Chapter-Celiac Sprue Association

You can have your cake… (GLUTEN FREE)
And eat it too!!
www.buykind.com/images/Gluten_Free_Sugar_Free...

Expert dietitian evaluation of compliance to diet
• Dietitian evaluates adherence based on:1) frequency of gluten consumption; 2) behaviors when dining out; 3) confidence in following the diet; 4) label reading; 5) cross contamination at home; 6) use of oats
• Food label quiz
• 3 day food record or recall

Celiac Disease Summary
• Celiac disease is prevalent in US (and through out the world!!)
• Celiac disease has protean manifestations, in and out of the GI tract, and can even be ‘silent’
• Celiac disease screening easy, affordable, readily available
• By diagnosing and treating celiac disease early, can decrease/reverse complications
• Gluten free diet currently only acceptable treatment at this time… but future looks bright!

• Summary:
• Non celiac gluten sensitivity prevalence is many times higher than CD in the general population
• Lack of definition is due to heterogeneous causes of the condition
• Symptoms are caused by different mechanisms
• Management varies due to underlying cause

• Kellogs Corn Flakes
• Kellogs Rice Krispies
• GM Corn Chex
• GM Rice Chex
• Naturally Gluten free Foods
• Oats—which ones?
• Gerbers Rice Cereal
• Beach Nut Rice Cereal

• Breakfast Snack
• 1 cup Oat cereal 3 ozs chocolate milk
• I cup low fat milk 1 fruit leather bar
• ½ banana Dinner
• Lunch 1 oz chicken
• 2 ozs ground beef corn tortilla
• 5 french fries ½ GF krispy rice bar
• 3 ozs juice drink 4 ozs lemonade

• Breakfast Snack
• ¼ cup rice cereal 2 TBS raisins
• ¼ cup low fat milk 2 slices celery
• ½ banana Dinner
• Lunch 1 oz BBQ chicken
• 1 oz GF meat w cheese 3TBS baked beans
• 1 slice GF bread ¼ cup low fat milk
• Fresh fruit salad or veggie

• Irritable Bowel Syndrome (IBS)
• Wheat Allergy
• Weight loss

• Study in American J of Gastroenterology; Jan 11
2011
• 34 patients with IBS who did not have celiac disease.
• Double blind randomized placebo controlled rechallenge study

• Those re-introducing gluten experienced more pain, bloating and tiredness.
• All patients reported that gluten free diet reduced symptoms
• Six patients in the gluten challenge group developed symptoms quickly

• Is there such a thing as allergy to gluten ?

• Can affect skin, gastrointestinal tract or respiratory tract
• Symptoms: Hives, nasal and chest congestion, nausea, vomiting, anaphylaxis
• Prevalence: less than 1 percent of children
• Diagnosis: skin prick, blood, food challenge
• Treatment: avoid wheat products

Autism and Gluten Free Casein free diet
• Autism Spectrum Disorder (ASD) affects 1 in every 88 children in U.S. (up from 1 in 500 in 1995)
CDC
• Autism not associated with increased risk for celiac disease.
• Autistic individuals do not respond consistently to a gluten-free and casein-free diet
• A subset of children with autism have GI problems that respond to dietary/ nutrition intervention
Special Child, Special Diet, www.livingwithout.com

• Possible health problem can turn into social health problem as gluten is viewed as “toxic” for most people.
• What are the health and economic effects of following a self prescribed gluten free diet?
• Naturally GF diet is rich in fruits and vegetables so people eat healthier

• Avoid highly processed GF foods
• Shop the periphery of the grocery store
• What works best for weight loss currently

• Gluten free Daily—Education and Resources
• Find me Gluten Free—Restaurants and reviews
• Eating out G Free—Elizabeth Hasselbeck
• Tricia Thompson, MS, RD--www.glutenfree dietitan.com
• Melinda Dennis, MS, RD-
Deletethewheat.com