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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
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
MalabsorptionMalnutrition
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)
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
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
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
•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)
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
Food labels to clearly identify wheat and other
common food allergens in list of ingredients
Eight major foods or food groups—
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
Gastrointestinal profile
Intestinal biopsy
Or skin biopsy for DH
Celiac antibodies
IgA-tTG
IgA-EMA
IgA/IgG-DGP
Total IgA
Nutritional anemia profile
Hemoglobin
Hematocrit
Folate
Ferritin
Vitamin B12
Vitamin profile
Thiamin
Vitamin B6
25-hydroxy vitamin D
Mineral profile
Copper
Zinc
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