Living Gluten-free
in a
Gluten-filled World
Objectives






Overview of celiac disease and gluten sensitivity
Discuss common nutrient deficiencies
Identify foods to choose
Discuss strategies for navigating the grocery
store
Recognize food prep strategies to avoid cross
contamination
Cite tools available
2
What is Celiac Disease?
Celiac disease (CD) is a genetically
linked disease with an environmental
trigger.
 Eating certain types of protein fractions,
commonly called gluten, sets off an
autoimmune response that causes
damage to the small intestine.

3
The Diagnosis for CD – 3 Steps
1.
2.
3.
Physical examine including blood tests for
gluten antibodies (IgA based tests)
– EMA anti-endomysial
– TTG anti-tissue transglutaminase
– DGP Deaminated Gliadin Peptide
A small bowel biopsy
Implement the gluten-free diet
(process complete when symptoms subside)
4
What is non-celiac gluten sensitivity?
•Nonallergic and nonautoimmune response
to gluten
•Is thought not to cause damage to the small
intestine
•Individual tests negative for celiac disease
and wheat allergy but has adverse
response to gluten
•Diagnosis remains one of exclusion
5
Celiac Disease
and Non-Celiac Gluten Sensitivity
Celiac Disease
– autoimmune
– IgA, TTG (or others)
positive
– biopsy shows damage
– associated with
complications
6
Gluten Sensitivity
– non-autoimmune (test negative)
– non-allergic (test negative)
– normal biopsy
– complications not known
– no consensus on diagnostic
criteria
– diagnosis remains one of
exclusion
Both respond to the gluten-free diet!
CD Prevalence in the U.S.

1: 133
Average healthy people
At Risk Groups:
 1:56
Related symptoms
 1:39
2nd degree relatives
(aunt, uncle, cousin)

1:22
1st degree relatives
(parent, child, sibling)
Fasano A, et al. Arch Intern Med 2003 Feb 10;163(3):286-92.
7
Statistics…..celiac disease


Celiac disease affects at least 3 million Americans
– 97% are undiagnosed
The average rate of diagnosis is 4 years
Delay causes risk for developing:
– autoimmune disorders
– neurological problems
– osteoporosis
– cancer
Characteristics of adult celiac disease in the USA: results of a national survey. Green, P.H. et.al. American Journal of Gastroen
8
terology, 2001, 2006.
Statistics…..gluten sensitivity
Study from Naples, Italy estimates
six percent
of the U.S. population, or 18 million people,
suffer from gluten sensitivity (gs)
Journal of Internal Medicine Vol 269 No 6, June 2011 Review of May Symposium: Celiac Disease
Sapline A . Divergence of gut permeability and mucosal immune gene expression in two gluten-asso
ciated conditions: celiac disease and gluten sensitivity. BMC Med. 2011 Mar 9;9:23.
9
National numbers
adding up……..
3,128,450
1%
Celiac Disease (CD)
18,772,705
6%
Gluten Sensitivities (GS)
__________________________________________
21,901,000
7%
Total Estimate with CD or GS
.
US Census Bureau as of 8/22/11: 312,045,081
10
Omaha numbers
adding up……..
4,090
1%
Celiac Disease (CD)
24,540
6%
Gluten Sensitivities (GS)
_______________________________________
28,630
7%
Total Estimate in Omaha with CD or GS
*Omaha
CSA Chapter has 1700 names; assuming 50% contact
.
CSA the diagnosis rates are likely higher in this area
11
Census Data 2010 for NE and Omaha, 1,826,341 and 408,958 respectively
National numbers adding up……..
3,128,450
18,772,705
1% Celiac Disease (CS)
6% Gluten Sensitivities (GS)
__________________________________________
.
21,901,000 7% Total Estimate with CS or GS
US Census Bureau as of 8/22/11: 312,045,081
12
Symptoms…..over 300

GI
–
–
–
–
–
–
13

Diarrhea or constipation
Abdominal cramping
and bloating
Flatus (Passing Gas)
Constipation
Fat in stool
Malabsorption resulting
in nutrient deficiencies
www.csaceliacs.org
Emotional
– Depression
– Disinterest in normal
activities
– Irritability
– Mood changes
– Inability to concentrate
Symptoms…..

14
Other
– Anemia
– Appetite changes
– Decreased ability to clot
blood
– Decreased fat padding
feet/buttocks/hands
– Dehydration
–
–
–
–
–
Delayed puberty
Edema
Electrolyte imbalance
Fatigue
Gluten ataxia
(failure of muscle coordination)
–
Infertility/miscarriages
Symptoms…..

15
Other
– Mouth sores or cracked
lips
– Smooth or geographic
tongue
– Tooth enamel defects
– Muscle cramping
(hands and legs)
– Night blindness
– Nutrient deficiencies
–
–
–
–
–
–
–
Osteopenia
Osteoporosis
Pain in bones and joints
Very dry skin
Weakness
Weight loss (unexplained)
Dermatitis Herpetiformis
Other associated conditions….

16
Autoimmune Diseases  Malignancies
– Type 1 Diabetes
 Enteropathic-associated
T-cell lymphoma
– Thyroid Disease
 Small bowel
– Addison’s Disease
adenocarcinoma
– Sjorgen’s Syndrome
 Esophageal squamous
– Rheumatoid arthritis
carcinoma
– Autoimmune hepatitis
 Oropharyngeal squamous
– Vitiligo
carcinoma
– Raynaud’s Disease
 Dermatitis Herpetiformis
Health Hazard Assessment for Gluten Exposure in Individuals with Celiac Disease: Determination of Tolerable Daily Intake Levels and Levels of Conc
ern for Gluten. May 2011. http://www.fda.gov/downloads/Food/ScienceResearch/ResearchAreas/RiskAssessmentSafetyAssessment/UCM264152.pdf
Symptoms in Children


How is the child developing?
– Slowly
– Not gaining weight
– Losing weight
Under age three:
– Growth failure
– Diarrhea
– Projectile vomiting
– Abdominal
bloating/distention

Older children:
–
–
–
–
–
Crankiness
Difficulty
concentrating
Irritability
Personality
changes
Poor memory
17
The Diet is the Prescription!
Medical Nutrition Therapy
Dietitians are
the
Nutrition Experts
18
Three Step Approach
A Self-Management Guide to the GF Diet
Step 1 – Foundation
Basic self-management
Begin healing
Make risk-free choices
Choose naturally gluten-free foods
Eliminate wheat, barley, rye, common oats, crosses
and derivatives
Become knowledgeable Prepared by Jean Guest, PhD, RD, LMNT
19
Three Step Approach
A Self-Management Guide to the GF Diet
Step 2 – Expansion
Intermediate self-management
Symptoms resolving
Evaluate choices
Address intolerances and allergies
Continue knowledge process
20
Three Step Approach
A Self-Management Guide to the GF Diet
Step 3 – Maintenance
Advanced self-management
Habits for optimal health
Evaluate and update plan
Living a full life
21
Most Common Nutrient Deficiencies
Iron
B-12
Folic Acid
Calcium
Vitamin D
Fiber
22
Sources of Heme-Iron
Iron (mg)
%DV
Beef, chuck, lean only, braised, 3 oz
3.2
20
Turkey, light meat, roasted, 3½ oz
1.6
8
Chicken, breast, roasted, 3 oz
1.1
6
Pork, loin, broiled, 3 oz
0.8
4
Tuna, white, canned in water, 3 oz
0.8
4
Food
U.S. Department of Agriculture, Agricultural Research Service. 2003. USDA Nutrient Database for Standard R
eference, Release 16. Nutrient Data Laboratory Home Page, http://www.nal.usda.gov/fnic/foodcomp
23
Sources of Non-heme Iron
Food
Iron(mg)
%DV
9
50.00%
Soybeans, mature, boiled, 1 c
8.8
50.00%
Beans, kidney, mature,
boiled, 1 c
5.2
25.00%
Molasses, blackstrap, 1 T
3.5
20.00%
Spinach, boiled, drained, ½ c
1.9
10.00%
Chex Cereal, ¾ c
U.S. Department of Agriculture, Agricultural Research Service. 2003. USDA Nutrient Dat
abase for Standard Reference, Release 16. Nutrient Data Laboratory Home Page, http://w
ww.nal.usda.gov/fnic/foodcomp
24
Sources of B-12
Food
B-12 (mcg)
%DV
Trout, rainbow, farmed, cooked, 3 oz
5.4
90.00%
Salmon, sockeye, cooked, 3 oz
4.9
80.00%
Beef, top sirloin, broiled, 3 oz
Breakfast Cereals, fortified with 25%
B12 (Chex Cereal, 3/4c)
Yogurt, plain, 1 cup
Milk, 1 cup
Egg, large, 1 whole
2.4
1.5
40.00%
25.00%
1.4
0.9
0.6
25.00%
15.00%
10.00%
U.S. Department of Agriculture, Agricultural Research Service. 2003. USDA Nutrient Dat
abase for Standard Reference, Release 16. Nutrient Data Laboratory Home Page, http://w
ww.nal.usda.gov/fnic/foodcomp
25
Sources of Folate/Folic Acid
Food
Micrograms(μg)
Chex Cereal, fortified with 50% of DV,
Spinach, frozen, cooked, boiled, ½ c
Great Northern beans, boiled, ½ c
Asparagus, boiled, 4 spears
Rice, white, long-grain, parboiled,
enriched, cooked, ½ c
200
100
90
85
65
%DV
50.00%
25.00%
25.00%
20.00%
15.00%
U.S. Department of Agriculture, Agricultural Research Service. 2003. USDA Nutrient Database
for Standard Reference, Release 16. Nutrient Data Laboratory Home Page, http://www.nal.usda.
gov/fnic/foodcomp
26
Food Sources of Calcium
Food
Calcium(mg)
%DV
Yogurt, plain, low fat, 8 oz
415 42.00%
Sardines, canned in oil, with bones, 3 oz
324 32.00%
Cheddar cheese, 1.5 oz
306 31.00%
Milk, nonfat, 8 oz
302 30.00%
Mozzarella, part skim, 1.5 oz
275 28.00%
Orange juice, calcium-fortified, 6 oz
200-260 20-26%
U.S. Department of Agriculture, Agricultural Research Service. 2003. USDA Nutrient Database for Standard Reference, Release 16.
Nutrient Data Laboratory Home Page, http://www.nal.usda.gov/fnic/foodcomp
27
Food Sources of Vitamin D
Food
Vit D (IU's)
%DV
1360
340.00%
Salmon, sockeye, cooked, 3oz
794
199.00%
Tuna fish, canned in water, drained, 3 oz
154
39.00%
Cod liver oil,1T
Milk, nonfat, reduced fat, and whole,
vitamin D-fortified, 1 c
Orange juice fortified with vitamin D, 1 c
check product labels, as amount of added vitamin D
varies)
115-124 29-31.00%
100
25.00%
80
20.00%
(
Yogurt,
fortified vitamin D, 6 oz
(more heavily fortified yogurts provide more of the DV)
U.S. Department of Agriculture, Agricultural Research Service. 2003. USDA Nutrient Database for Standard Reference, Release 16.
Nutrient Data Laboratory Home Page, http://www.nal.usda.gov/fnic/foodcomp
28
Non-Food Sources of Vitamin D
Be sensible!! Don't burn!
5 - 10 minutes per day
30 minutes = 20,000 IU's
VitaminDHealth.org
29
Food Sources of Fiber
Food
Fiber (g)
Wild Rice, ½ c
4.5
Flax Seed, 2 T
6
Raspberries, ½ c
4
Baked Beans, canned, plain, ½ c
5.2
Sweet potato, cooked, no skin, 1 medium
3.9
Almonds, 1 oz
3.3
Jean E. Guest, PhD, RD, LMNT. Fiber! Fiber! Fiber! CSA Lifeline Volume XXVII, 2007.
Tricia Thompson, MS, RD and Suzanne Simpson, RD. Counting Gluten-Free Carbohydrates 2010. Located at http://csaceliacs.org/.
30
Supplement Savvy
GF Multivitamin
GF B-Complex Vitamin
GF Vitamin D
GF Calcium
Talk with your health care team!
31
Where is gluten found?...
wheat
 barley
 rye
 oats (unless gf)
 (WBRO)

32
Additional sources of gluten….
A gluten-free diet means no:

Wheat
– wheat flour, AP flour, wheat bran, wheat
starch, wheat germ and other forms of
wheat:
-Durum -Emmer -Kamut
-Semolina
-Triticale -Spelt -Einkorn
-Graham
-Seitan - Bulger - Couscous - Faro
33
Gluten-free basic choices

Gluten-free foods include:
– Fresh salad (no croutons)
– Fruits and vegetables
– Milk
– Meats, fish or poultry

–
Pure spices and herbs

–
(no breading, no marinade)
(watch out for seasonings)
Pasta and breads labeled gluten-free
34
Preparing for the grocery store
35
FDA’s Proposed
Definition of Gluten-Free




Cannot contain wheat, barley, rye (W, B, R)or a crossbred
hybrid of these grains
Cannot contain ingredient derived from W, B, R that has
not been processed to remove gluten
Can contain an ingredient derived from W, B, R that has
been processed to remove gluten but with final product
containing < 20 ppm gluten
Must contain <20 ppm or more gluten, whether gluten
comes from an ingredient or is in the food unintentionally
due to cross contact
36
How to know if something is
gluten-free?
CSA
Recognition Seal
< 5 ppm
GIG
Certification
< 10 ppm
NFCA
Certification
<10 ppm
Health Canada dictates - 20 ppm is guide
37
Regulatory Agencies

FDA
– Regulates all foods except meat,
poultry & egg products
–
FALCPA covers all packaged foods in
the US except those covered by the
USDA
38
Label reading know how….
8 Allergens
Eggs
Fish
Milk
Peanuts
Shellfish
Soybeans
Tree nuts
Wheat
Food Allergy Labeling and Consumer Protection Act (FALCPA)
requires only top 8 allergens to be identified. Barley, rye, oats and
their derivatives are not required to be listed.
39
Label reading know how….

Food Allergy Labeling and Consumer
Protection Act (FALCPA) requires the 8
top allergens to be identified.

Barley, rye, oats and their derivatives are not
included…keep an eye out for malt and
brewers yeast too.
40
Regulatory Agencies

USDA
– Regulates meat, poultry and eggs
– No allergen labeling requirements at
this time
– If there is a “Contains” statement the
manufacturer is voluntarily complying
with FALCPA
41
Label Reading Savvy Ex 1

Is this nutrition bar gluten-free?
Ingredients: Whole Grain Oats, Maltose Corn
Syrup, Sugar, Rice Flour, Almonds, Honey,
Dried cranberries, Fructose, Canola Oil,
Maltodextrin, Dried Pomegranate Arils, Soy
Lecithin, Salt, Malt Extract, Baking Soda,
Natural Flavor.
CONTAINS ALMOND, SOY; MAY CONTAIN PEANUT
AND SUNFLOWER INGREDIENTS
42
Label Reading Savvy Ex 2
Modified Food Starch:
USDA product may include
Frozen Turkey
modified food starch and “wheat”
Ingredients: Turkey, Water, might not be stated on the label
Salt, Modified Food Starch,
Sodium Phosphates, Natural Natural Flavorings: USDA
product containing protein from W,
Flavorings
B, R, the flavoring ingredient must
be listed in the ingredients list by
its common or usual name
Bottom line – call on ? products 43
Navigating the grocery store



Speciality areas may be located within
the store with gluten-free items
Select package items rather than bulk
bins
Select products with gluten-free seals
whenever possible (especially grains,
seeds, and flours*)
*Thompson T, Lee AR, Grace T. Gluten contamination of grains, seeds, and flours in the United
States: a pilot study. Am Diet Assoc 2010 Jun;110(6):937-40.
44
Hidden Sources of Gluten
The Three C’s – Content, Contact, Contamination
Content - Foods








Breading
Brewer’s Yeast
Broth
Brown rice syrup
Casseroles
Croutons
Gravies






Foods injected with broth
Modified food starch
Sauces
Soy sauce
Seasonings
Processed foods
Cold cuts, deli foods,
pre-cooked foods, frozen
foods
45
Hidden Sources of Gluten
The Three C’s – Content, Contact, Contamination
Content and Contact – Other Items
•
•
Manufacturing
• Flour dust in air
• Flour on conveyor
belts
School
• Play dough
• Paints
• Crayons
•
Personal Care
Items
• Lipstick, make
up
• Lotions
• Medications
46
Tips to avoiding cross-contact
Separate area and items needed to avoid
cross-contact:
 Strainers
 Utensils, Parchment Paper
 Toaster Oven
 Designated Prep Area or Station
47
What are healthy and tasty glutenfree grains?










Brown rice
Whole Corn
Millet
Teff
Sorghum
Wild Rice
Buckwheat
Amaranth
Quinoa
Gluten-Free Oats? Not
recommended until 1 year on glutenfree diet ; then self-assessment and
antibody testing recommended
48
Gluten-Free Sources of Fiber






Almond
Amaranth
Buckwheat
Cornmeal, corn bran
Flax seed and meals, Chia seed
Bean (garbonzo, garfava, black, white, pinto,
navy, soy, kidney)
49
Gluten-Free Sources of Fiber
Indian wheat grass (Montina)
 Millet
 Rice bran
 Brown rice flour
 Soy flour
 Teff
 Quinoa
 Pea Hull Fiber

50
Discover New Foods
Amaranth: used in ancient civilizations,
robust, nutty flavor
 Buckwheat: actually is a fruit and a
relative of rhubarb, nutty flavor
 Flax: size of sesame seed, grind to
improve nutrient absorption

51
Discover New Foods
Millet: closely related to corn, nutty flavor
 Indian rice grass: sweet, nutty, almost
wheat like flavor
 Quinoa: strong flavor, combine with other
flours or foods
 Sorghum: nutty flavor

52
Discover New Foods
Teff: grass, mild molasses-like flavor,
more nutritious than common grains
 Wild rice: is not a member of the rice
family, nut-like flavor
Reference: Case, Shelley, Gluten-Free
Diet, April 2006, www.glutenfreediet.ca

53
Kitchen Pantry Smarts!
Keep gf items in separate container
Keep gf items above other items
54
Resources –Support Groups

Celiac Sprue Association
www.csaceliacs.org
55
What does a support group provide?
Resources for daily living that are based on
science and research
 Life long friendships to journey the path of
living gluten-free
 National support from headquarters
 As RD, need to help groups “filter”
information

56
ADA Resources

Evidence Analysis Library (EAL) 2009
– Evidence-based Nutrition
Practice Guidelines for Celiac Disease
– www.adaevidencelibrary.com
57
ADA Resources

Celiac Disease Toolkit based on the EAL
data,visit www.eatright.org for more information

DIGID-Dietitians in Gluten Intolerance
Diseases (a sub- unit of the Medical Nutrition
Practice Group) www.mnpg.org
58
CSA Resources

CSA Web-site: www.csaceliacs.org
– Toll Free: 877-272-4272
– Local Support Group Information
– Three Step Diet Approach (Self-Mngt Approach)
– Counting Gluten-Free Carbohydrate Guide!!!
 Just download, its free!
– Fact Sheets on Common Nutrient Deficiencies
59
CSA Tools
CSA Gluten-Free Product Listing
Available:
- CD
- Spiral Bound Book
- iPad or iPhone App “GlutenFreeMe”
http://itunes.apple.com/us/app/glutenfreeme
60
60
Other resources
Grocery Store Gluten-Free Listings
– Hy-Vee Example: http://www.hyvee.com/meal-solutions/specialdiets/default.aspx
 NIH – Teaching Materials
– http://www.celiac.nih.gov/Materials.aspx
 Gluten Free Drugs:
– www.glutenfreedrugs.com
61

Gluten-free living!
62
Activity


Break into 6 groups
Plan gluten-free options for one of the
following:
- children’s birthday party
- evening catered evening event at Joslyn
- bed and breakfast
- hospital – mother just delivered baby
- bar and grill
- assisted living center
Thank you!
Shelly Asplin, MA, RD, LMNT
Celiac Sprue Association
shelly.a@csaceliacs.org
PO Box 31700 Omaha, NE 68131-0700
Toll Free: 877-CSA-4CSA · Fax: 402-643-4108
www.csaceliacs.org
www.facebook.com/csaceliacs
www.twitter.com/csaceliacs