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Sandy Arner, RD, LDN
Clinical Dietitian
James H. Quillen VA Medical Center
March 26, 2013
Disclosure Slides

 Financial Interest
I, Sandra Arner,
DO NOT have a financial
interest/arrangement or
affiliation with one or
more organizations that
could be perceived as a
real or apparent conflict of
interest in the context of
the subject of this
presentation
 Drugs
I, Sandra Arner,
DO NOT anticipate
discussing any unapproved/
investigative use of a
commercial product/device
during this activity or
presentation
Learning Objectives

Describe three symptoms of celiac disease
State two conditions associated with untreated
celiac disease
Identify three grain alternatives that are gluten free
What Is Celiac Disease (CD)

 Autoimmune digestive disease
 Damages villi of small intestine
 Interferes with absorption of nutrients from food
 Those with CD cannot tolerate gluten
 Also called


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Gluten-sensitive enteropathy
Sprue
Non-tropical sprue
Celiac sprue
 It is NOT an allergy
Cause of Celiac Disease

 Still unknown
What is Gluten?

 General name for prolamins (storage proteins) in
wheat, rye, barley
 Toxic prolamins
 Gliadin in wheat
 Secalin in rye
 Hordein in barley
Some CD Statistics

 1 in 133 or 1% of American population has Celiac
Disease or CD (about 3 million people)¹
 1 in 141 or 0.71% of Americans have CD²
 In 70% of identical twin pairs, both twins have the
disease³
 Family members who have an autoimmune disease
are at a 25% increased risk of having celiac disease³
¹Prevalence of Celiac Disease in At-risk and Not-at-risk Groups in the United
States. Arch Int. Med. (2003) 163:286
²The American Journal of Gastroenterology 107, 1538-1544 (October 2012)
³Nationl Foundation For Celiac Awareness, Updated Feb. 28, 2013
Statistics (cont’d)

 Estimated 85% of Americans who have celiac disease are
undiagnosed or misdiagnosed with other conditions¹
 6-10 years is the average time a person waits to be correctly
diagnosed²
 5-22% of celiac patients have an immediate family member
(1st degree relative) who also has celiac disease¹
 Burden of disease over four-year period per patient:
 Celiac-free males: $4,019
 Males with CD: $14,191¹
 May is Celiac Awareness Month
¹National Foundation for Celiac Awareness, Updated Feb. 28, 2013
²Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel
Deaconness Medical Center
Symptoms Celiac Disease
 Lactose intolerance
 Abdominal pain
 Bloating/gas
 Diarrhea and/or
constipation
 Indigestion/reflux
(“heartburn”)
 Nausea and vomiting
 Fatigue/lethargy
 Muscle weakness
 Itchy skin rash
 Tingling/numbness
 Mouth sores
 Bone pain
 Easy skin bruising
 Edema of hands and feet
 Joint pain
 Delayed growth
 Weight loss or gain
 Osteoporosis
 Headaches
 Depression/irritability
 Hair loss
Symptoms of CD (cont’d)

 Iron, folate and/or
vitamin B12 deficiency
 Other vitamin and
mineral deficiencies
(A,D, E, K, calcium)
 Elevated liver enzymes
 Discolored teeth
 Migraine headaches
 Depression
 Menstrual irregularities
 Infertility in both
women and men
 Recurrent miscarriages
Celiac Disease Risk Factors

 An immediate family member with CD
 Presence of HLA-DQ2 and HLA-DQ8 genes
 About 95% of people with celiac disease have the
HLA-DQ2 gene
 Most of the remaining 5% have the HLA-DQ8 gene
 Major life event, emotional stress, pregnancy, or
surgery in those who are genetically predisposed
 Those with other autoimmune disease
 Those with another genetic disorder
 Infants—exposure to gluten before 3 months of age
Some Disorders/Conditions
Associated More Frequently with CD

 Type I diabetes
 Thyroid disease
 Liver disease
 Sjögren’s syndrome
 Lupus
 Addison’s disease
 Scleroderma
 Alopecia areata
 Rheumatoid arthritis
 Turner syndrome
 Raynaud’s syndrome
Diagnosis of CD

 Symptoms
 Blood test
 Small bowel biopsy
 Should be tested while on a gluten-containing diet
Serologic Tests

 No standardization in testing for diagnosis of CD
 Anti-tissue transglutaminase antibodies (tTGA)
 Anti-endomysium antibodies (EMA)
 Gluten free diet should not be started before blood
tests and biopsy
Diagnosis—The Biopsy

 Diagnosis: Intestinal
Biopsy
 A biopsy of the small
intestine can confirm the
findings of the blood
test. Celiac disease
damages or destroys the
villi in the intestine
What Does Celiac Disease Look Like?

Refractory Celiac Disease

 Very small percentage of people with celiac disease
do not respond to a gluten-free diet.
 May be prescribed glucocorticoids or at times
immunosuppressants are indicated to induce
remission
Dermatitis Herpetiformis (DH)

 Another form of celiac disease
 Chronic skin condition
 Intense burning
 Itchy and blistering rash
 Often misdiagnosed as eczema, contact dermatitis,
allergies, hives, herpes, or psoriasis
 Many with DH have varying degrees of small
intestinal villous atrophy
 Diagnosis—skin biopsy from unaffected skin
adjacent to blisters or erosions
 Treatment is a strict gluten free diet for life
Some Complications
of Untreated CD

 MalabsorptionMalnutrition
 Low blood glucose or swings in blood glucose
 Osteoporosis
 Infertility
 Neurological problems
 Lactose intolerance
 Cancer
Treatment for CD

 Only known treatment is strict gluten free diet for life!
 Additional vitamin and mineral supplements may be
needed to correct malnutrition
 Some may also need to eliminate lactose until damaged
bowel is healed
Contain Gluten (from wheat)
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Atta
Bulgur
Couscous
Durum
Einkorn
Emmer
Farina
Graham flour
Hydrolyzed wheat protein
Kamut
Motzoh, Matzoh meal
Modified wheat starch
 Seitan
 Semolina
 Spelt (a form of wheat)
 Dinkel
 Farro or Faro
 Triticale
 Wheat
 Wheat bran
 Wheat flour
 Wheat germ
 Wheat starch
Contain Gluten (from barley)

 Ale
 Barley (flakes, flour,
pearl)
 Beer
 Brewer’s yeast
 Lager
 Malt
 Malt extract, malt
syrup, malt flavoring
 Malt vinegar
 Malted milk
Contain Gluten (from rye)

 Rye bread
 Rye flour
Commonly Have Gluten
Red Flags For Gluten  “Hidden” Gluten
 In bread, cereal, pasta,
crackers, baked goods
 Wheat
 Rye
 Barley
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Processed meat
Potato chips
French fries
Breaded foods
Malt (made from barley)
Hydrolyzed Vegetable Protein (often
contains wheat)
Sauces
Soy sauce (made from soy & wheat)
Marinades
Gravy
Salad dressings
Candy
Flavored coffees and teas
Nutritional supplements
Soups
Controversial Oats

 Oatmeal
 Oat bran
 Oat flour
 Oats
 Safety of oats much debated
 Barley often contaminates oats
 Wheat contaminates oats
 Only consume pure,
uncontaminated oats
 Best to be labeled or certified as
“gluten free”
Gluten Free
Grains/Flours/Starches
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 Rice
 Corn (maize)
 Soy flour
 Potato flour
 Tapioca
 Bean flour
 Garfava flour
 Sorguhm
 Quinoa
 Potato flour/starch
 Millet
 Buckwheat
 Arrowroot flour
 Amaranth
 Teff
 Montina® (Indian ice grass)
 Flax
 Nut flours
 Cornmeal
 Cornstarch
Using Gluten Free Flours

 Buy items made with whole grain flour and bean flour
to get healthier nutrients
 GF often lower in fiber
 Purchase products with added vitamins and minerals
 Refined carbohydrates often in GF products generally
make baked goods higher in calories and total
carbohydrate than regular versions
 Replacing regular bread, muffins, baked goods for GF
products without regards to calories weight gain
MAY Contain Gluten

 •Brown rice syrup
 •Breading & coating
mixes
 •Croutons
 •Energy Bars
 •Flour or cereal
products
 •Imitation bacon
 •Imitation seafood
 •Marinades
 •Panko (Japanese bread
crumbs)
 •Pastas
 •Processed luncheon
meats
 •Sauces, gravies
 •Self-basting poultry
 •Soy sauce or soy sauce
solids
MAY Contain Gluten
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 •Soup bases
 •Stuffings, dressing
 •Thickeners (Roux)
 •Communion wafers
 •Herbal supplements
 •Prescription drugs &
over-the-counter
medications
 Lipstick
 •Nutritional supplements
 •Vitamins & mineral
supplements
 •Play dough: a potential
problem if hands are put
on or in the mouth while
playing with play dough
 Hands should be
washed immediately
after use
Alcohol

Beer and Ale
 Has gluten from barley
malt
 ONLY have gluten free
beers or ale that are so
labeled
 And IF your healthcare
provider allows
Wine, Distilled Alcohol
 Wine and distilled
alcohol are generally
safe
 As long as your
healthcare provider
allows alcohol
Let Food Be Thy Medicine

Incorporate whole foods into
gluten free diet
Reverse nutritional deficiencies
Restore gut health
Nutrient-Dense
Gluten Free Diet

 Adhere to a total (100%) gluten free diet
 Need nutrient-dense foods to regain health
 Need proper nutrition to restore gut health
 Focus on whole foods vs. highly processed gluten free
packaged foods (& prepare without ingredients that contain
gluten)
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Meat
Fish
Eggs
Rice
Beans
Fruits
Vegetables
Cross-Contamination Concerns

 Preparing foods on common surfaces with gluten items
 Using utensils that are not thoroughly cleaned after
preparing gluten-containing foods
 Using a common toaster for GF bread and regular bread
is a major source of contamination
 Sharing flour sifters with gluten-containing flours
 Deep frying foods cooked in oil shared with breaded
products containing gluten
 Using knives for spreadable condiments for both gluten
free and gluten-containing products
Label Reading

A must for those with celiac disease
Carefully check the ingredient list
Food Allergen Labeling and Consumer Protection Act
of 2004 (FALCPA)
(Public Law 108-282, Title II) of the FDA
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 Food labels to clearly identify wheat and other
common food allergens in list of ingredients
 Eight major foods or food groups—
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Milk
Eggs
Fish (e.g., bass, cod, flounder)
Crustacean shellfish (e.g., crab, lobster, shrimp)
Tree nuts (e.g., almonds, walnuts, pecans)
Peanuts
Wheat
Soybeans
 Develop and finalize rules for term “gluten free” on
product labels (not done yet)
“Gluten Free”
 FDA gluten free labeling to
be voluntary
 FDA proposing to define the food labeling term "glutenfree" to mean a food bearing this claim does not contain any
of the following:
 An ingredient that is a "prohibited grain," which refers to any
species of wheat (e.g., durum wheat, spelt wheat, or kamut), rye,
barley, or their crossbred hybrids
 An ingredient (e.g., wheat flour) that is derived from a
"prohibited grain" and that has not been processed to remove
gluten
 An ingredient (e.g., wheat starch) that is derived from a
"prohibited grain" that has been processed to remove gluten, if
the use of that ingredient results in the presence of 20
micrograms or more gluten per gram of food (i.e., 20 ppm)
 Or 20 micrograms or more gluten per gram of food
Some Gluten Free Symbols

Eating Gluten Free

Grocery Shopping
 MANY gluten free
foods available now
 Various stores carry
gluten free foods
Eating Out
 Must ask, ask, ask
 Some restaurants do
have gluten free menu
items
GF Diet Potentially
Low in Nutrients

 Iron
 Folate
 Niacin
 Vitamin B12
 Calcium
 Phosphorus
 Zinc
 Fiber
Source: Academy of Nutrition and Dietetics Celiac Disease Toolkit 2011
Assess Biochemical Data &
Results of Medical Procedures
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Gastrointestinal profile
Intestinal biopsy
Or skin biopsy for DH
Celiac antibodies
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IgA-tTG
IgA-EMA
IgA/IgG-DGP
Total IgA
 Nutritional anemia profile
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Hemoglobin
Hematocrit
Folate
Ferritin
Vitamin B12
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 Vitamin profile
 Thiamin
 Vitamin B6
 25-hydroxy vitamin D
 Mineral profile
 Copper
 Zinc
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Lipid profile
Electrolyte profile
Renal profile
Bone density screening
Source: Academy of Nutrition and Dietetics Celiac Disease Toolkit 2011
Nutrition Intervention

 Education on gluten free
diet
 Consumption of
whole/enriched glutenfree grains & other
products
 Consideration of MV and
mineral supplement
 Inclusion of gluten free
oats as tolerated
 Calcium/vitamin D for
reduced bone density
 Iron supplementation for
iron deficiency anemia
 Education on food crosscontamination
Source: Academy of Nutrition and Dietetics Celiac Disease Toolkit 2011
Reverse Nutritional
Deficiencies

 Iron
 Calcium
 Vitamin D
 Zinc
 Magnesium
 Vitamin K
 Folate
 Vitamin B6
 Vitamin B12
 Fiber
Reverse Nutrition
Deficiencies (cont’d)

 Foods first
 Supplements as necessary
 Nutrients often cannot be absorbed until intestinal
site of absorption heals
 Improvement in nutrient stores important
 Indicates intestines are healing
 Indicates adherence to gluten free diet
 Follow up blood to test antibodies and nutrient
levels is important
Reverse Nutrition
Deficiencies (cont’d)

 Ensure medications and supplements are gluten free
 Be aware of physiological reasons someone may not
be absorbing certain nutrients
 Then make recommendations and monitor
 Provide tips for maximizing nutrient uptake
Restore Gut Health

 Number one way to improve gut health is removing
gluten from diet
 May take longer to restore gut health for some
 Some may need steps beyond gluten free diet
 Digestive health and integrity of gut lining play
important roles in immune health
Remember

Wheat free is not gluten free
When in doubt, go without
May be contamination in food preparation
Stay symptom free with gluten free
Eating gluten free is work
Who Is Buying Gluten Free

 Those who suffer from celiac disease
 Those who are sensitive to gluten
 Those who think gluten free products are healthier
 Those who follow a trend in the news
Future Possibilities

 Gluten-degrading enzymes
 Modified grains that lack immunogenic compounds
 Zonulin inhibitors that decrease intestinal
permeability
 Anti-inflammatory therapy
 Immunotherapy
 Hookworms
Tax Deductions

 The cost of gluten-free (GF) food that is in EXCESS of
the cost of the gluten containing food that you are
replacing
 The full cost of special items needed for a GF diet
may be deducted
 If you make a special trip to a store to purchase GF
foods, the actual cost of your transportation to and
from the store is deductible
 The full cost of postage or other delivery expenses
for GF foods made by mail order are deductible
Helpful Web Sites

 Celiac Disease Foundation:
http://www.celiac.org
 Celiac Sprue Association:
http://www.csaceliacs.info
 National Foundation for Celiac Awareness:
http://www.celiaccentral.org
 NIH Celiac Disease Awareness Campaign:
http://celiac.nih.gov
 National Digestive Diseases Information Clearinghouse
http://digestive.niddk.nih.gov
 Celiac.com
http://www.celiac.com