Wheres the Wheat?

Managing celiac disease in

the small college setting
Presented by

Marty Reuman Pieper, MSN, FNP-BC

Bentley University

Gerri Taylor, MSN, ANP-BC

Bentley University

Deanna Busteed, MS, RD, CSSD, LD

Answer:

Everywhere

Why here and now?

Given average delay in diagnosis, may be
diagnosed in college students
College students are (newly) responsible
for food choices at dining services,
choosing snacks, buying groceries
Undiagnosed celiac disease is associated
with a 4x increased risk of death
Prevalence has increased dramatically

Prevalence of Celiac Disease

Commonly estimated at ~1% of Americans
Equals ~3 million people
Only ~1-5% have been diagnosed

~10% among first degree relatives

Up to ~75% in identical twins
Female : Male :: 2:1
Cultural demographics
More likely to occur among Europeans
Probably underestimated in many countries

Perspectives
Compare to
Rheumatoid arthritis (~1% of Americans)
Epilepsy (~1% of Americans)
Diabetes type 1 and 2 (8% of Americans)
Type 1 diabetes effects ~2 million Americans

Autoimmune diseases effect 8% of

Americans

Normal Small Intestinal Villi

www.mayoclinic.com/health/medical/IM02906

Pathophysiology of Celiac Disease

From JAMA Patient Page Sept 2009

Pathophysiology
Autoimmune disorder with environmental
trigger
Abnormal response to gluten protein

Genetic component
Occasional triggers
Infection
Physical injury or surgery
Pregnancy
Severe stress

Clinical Presentation
Classic gastrointestinal symptoms
Chronic diarrhea 45-85%
Fatigue 78-80%
Abdominal pain and bloating 34-64%
Weight loss or low weight 45%
Constipation 12-38%
Vomiting 5-16%

Clinical Presentation (continued)

Atypical non-GI symptoms
Fatigue, malaise 78-80%
Osteopenia up to 40%
Dermatitis herpetiformis 15-25%
Iron deficiency anemia 10-15%
Neurological dysfunction 8-14%
Short stature 10%
Osteoporosis 1.5-3%

Clinical Presentation (continued)

Silent
Asymptomatic or minimally symptomatic individual
Positive serology / mucosal damage
Discovered through screening or during evaluation
for another disease

Latent
Previous celiac diagnosis that responded to
management; then asymptomatic with normal diet
May have positive serology
Normal mucosa
Progresses to celiac disease over time

Associated with other conditions

Other autoimmune disease [30%]
Thyroid disease [up to 14%]
Type I diabetes [up to 12%]
Infertility, repeated miscarriages [2-4%]
Down syndrome [3-12%]
Turners syndrome [2-10%]

Complications

Chronic malabsorption of nutrients and vitamins

Osteoporosis
Infertility / repeated miscarriages
Risk of certain malignancies
Non-Hodgkins lymphoma
Others of GI tract

Risk of developing another autoimmune disease

Differential Diagnosis

Irritable bowel syndrome

Inflammatory bowel disease
Intestinal infections
Iron deficiency anemia
Chronic fatigue syndrome
Thyroid disease
Eating disorder

Diagnosis of Celiac Disease

Index of suspicion
History of symptoms
Symptoms
Onset / duration
Character / severity / frequency
Patterns / timing
Aggravating or alleviating factors
Any food intolerances or lactose intolerance

Review of Systems
Gastrointestinal

Abdominal pain, bloating, gas, cramping; diarrhea,

constipation, fatty stools; weight loss or changes

Skin

Blistering rashes; unexplained contact dermatitis;

eczema; easy bruising, delayed clotting; stomatitis

Musculoskeletal Bone or joint pain; (stress) fractures; muscle

atrophy; dental defects; short stature

Reproductive

LMP; delayed puberty; irregular menses;

miscarriages; infertility; (menopause); impotence

Neurological

Ataxia, neuropathies; fatigue; migraines; night

blindness

Endocrine

Hot or cold intolerance; dry skin; hair loss

Psychological

Depression; fatigue / lassitude; irritability; stresses,

life changes

Past Medical History

Any other diagnoses current, during childhood
IBS, Crohns, nervous stomach, recurrent
gastroenteritis
Pancreatitis, hepatitis
Autoimmune diseases
Thyroid, diabetes, liver disease
Rheumatic diseases Sjogrens, fibromyalgia

Chronic fatigue or syndrome

Anemia
Osteoporosis or osteopenia
Cancer NHL, GI
Infertility

Pediatric History
Records from pediatrician
History including particularly
Failure to thrive
Diagnoses considered in past

Pertinent labs
Growth chart

Family History

Celiac disease
Other intestinal diseases
Autoimmune diseases
Thyroid disease
Diabetes
Genetic syndromes

Physical
Height; weight; vital signs
General
Skin
HEENT
Abdomen
Musculoskeletal
Neurological
Gynecological

Laboratory studies
Bloodwork
Anti-tissue transglutaminase (tTG) antibodies
Endomysial antibodies (EMA)
Deamidated gliadin peptide (DGP) antibody
Antigliadin antibodies (AGA) not as accurate

Endoscopy with biopsies = gold standard

Marsh stages 0-4

Other labs as indicated by symptoms

NIH Consensus Statement

Identifies six key elements for management:

Consultation with a skilled dietitian

Education about the disease
Lifelong adherence to a gluten-free diet
Identification and treatment of nutritional deficiencies
Access to an advocacy group
Continuous long-term follow up by a multidisciplinary
team
http://consensus.nih.gov/2004/2004CeliacDisease118PDF.pdf

Support from a team is KEY!!!

Living with a chronic disease is hard!
Lifestyle changes are hard!

Celiac Disease Team Approach

Health Care Providers
Therapist/Counselor

Nutritionist

Student
Family/Friends

Food Services

Genetic Counselor

Clinical follow-up
Consider the whole patient
Observe for change in symptoms over time
Evaluate for possible complications of
disease
Supplement to address vitamin and
mineral deficiencies
Follow-up no specified timeline
Review knowledge of celiac disease
Re-assess lab values
Reinforce management of gluten-free lifestyle

Patient Education
Determine level of understanding
Disease process
Complications and risks
Benefits of following a restrictive diet

Identify potential barriers to optimal control

Time constraints
Social and emotional implications
Financial burden of compliance

Implications for family members

Gluten Free Lifestyle and Diet

Support Groups
Local
On campus / City / Region

National
Celiac Disease Foundation www.celiac.org
The Gluten Intolerance Group www.gluten.net

Online
National Foundation for Celiac Awareness
www.celiaccentral.org/college
Celiac Disease Awareness Campaign
www.celiac.nih.gov
Social media

Educational Materials
Selected Pamphlets
Navigating the gluten free diet in college
www.celiaccentral.org/college
What I need to know about celiac disease
www.digestive.niddk.nih.gov
Gluten-free diet guide for families
www.naspghan.org

Selected Magazines
Gluten-Free Living www.glutenfreeliving.com
Living Without www.livingwithout.com

Selected Books
Celiac Disease: A Hidden Epidemic by
Peter Green and Rory Jones
The First Year: Celiac Disease And Living
Gluten-free by Jules Shepard
Gluten-Free Diet: A Comprehensive
Resource Guide by Shelley Case
Real Life with Celiac Disease by Melinda
Dennis

Nutrition Outline
Gluten free diet (basics and hidden
sources)
Review of food label/ingredient list
Sample gluten free diet
Challenges of on-campus dining
Healthy gluten free choices both on and
off campus
Support groups and resources

Gluten-Free Diet Basics

Wheat-free does not mean gluten free

Avoid wheat, rye, and barley

Avoid lactose
Avoid oats (controversial)
Avoid other wheat or wheat containing grains
(check labels):
Enriched flour, bromated flour, wheat starch, self
rising flour, cake flour, pastry flour
Bulgur, durum, eincorn, emmer, farina, graham
(flour), kamut, kasha, matzo meal, semolina,
smelt, triticale

Avoid Obvious Sources

Bread
Bagels
Cakes
Cereal
Cookies
Pasta /noodles
Pastries /pies/rolls
Beers/Lager/Ales

Avoid Hidden Sources of Gluten

Malt and malt flavorings are made from barley
Hidden sources
Cross-contamination (during product manufacture or at home)
Oats

Some preservatives and stabilizers

Additives, emulsifiers, thickeners
Starch

Some medications (prescription or OTC)

Practical Gastroenterology Series on Celiac Disease
January 2007 - Plogsted, S.,
Medications and Celiac Disease - Tips From a Pharmacist
Clan Thompson. Celiac Pocket Guides to Over the Counter Drugs &
Prescription Drugs (2007 & 2008) respectively)

Other Hidden Sources of Gluten

Some cosmetics
Lipstick, lip balm in particular
Neutrogena makes about 100 gluten free products

Instant Lip Remedy

Lip Boost Intense Moisture Lipstick SPF 20
Lip Boost Intense Moisture Therapy
Lip Moisturizer SPF 15
Lip Nutrition All
MoistureShine Lip Gloss
Overnight Lip Therapy

Stamps and envelopes

Use only stickers not lickable stamps and envelopes

Safe to Consume
Starch
MaltodextrinMade from cornstarch, potato
starch, or rice starch, but not from wheat

Vinegar and Alcohol

Distilled vinegar and distilled spirits are
gluten-free, however avoid malt vinegar and
malt beverages (e.g. beer)
Gluten free beer is now available
Tequila, potato vodka and rum are ok

Avoid cross contamination

Store GF supplies separately from gluten-containing
foods
Designate certain appliances (toaster) for use with
GF products only
Use clean utensils for cutting, mixing, cooking, and
serving GF foods
Have separate containers of butter, peanut butter,
and condiments or use squeeze bottles
Have a no double-dipping rule
Do not purchase flour or cereal from open bins

Processed foods that may contain gluten

Bouillon cubes
Brown rice syrup
Candy
Chips/potato chips
Cold cuts, hot dogs,
salami, sausage
Communion wafer
French fries

Gravy imitation fish

Rice mixes
Sauces
Seasoned tortilla chips
Self-basting turkey
Soups
Soy sauce
Vegetables in sauce

Safe Flours and Grains

Rice
Corn
Quinoa
Amaranth
Arrowroot
Buckwheat
Montina
Flax
Jobs tears
Potatoes
Lentils
Millet

Sago
Soy
Sorghum
Tapioca
Teff
Cornstarch
Manioc
Flours made from
Nuts
Beans
Tubers
Legumes

Making gluten free food choices

Stick to plain, simple foods
(mostly found in the outer aisles of the grocery store)

All plain meats, poultry, fish, or eggs

Legumes and nuts in all forms
Corn and rice in all forms
Dairy products including milk, butter, margarine, real cheese,
plain yogurt
All plain fruits or vegetables (fresh, frozen, or canned)
Vegetable oils, including canola
All vinegar except malt vinegar
Any food that says it is gluten-free

Celiac Healthy Eating Tips

Important to ensure adequate B vitamins,
iron and fiber
Whole grain GF products
Enriched GF products (instead of refined,
unenriched products)
Alternative plant foods (amaranth, quinoa,
buckwheat)
GF multivitamin and/or mineral supplement

Importance of reading labels

The Food Allergen Labeling and Consumer
Protection Act (FALCPA) of 2004
mandated that foods containing allergens,
such as wheat, be clearly listed on label

This is helpful for anyone with wheat

allergy, Celiac disease and gluten
intolerance.
Read labels and recheck periodically as
manufacturing process can change
New products introduced all of the time

Gluten-Free Certification
Program
Product of the Gluten Intolerant Group (GIG)
and is a non profit
Example of an independent verification of
products
Products carrying the GF logo meeting strict
gluten-free standards
GFCO is the only gluten-free certification
program in the world
http://www.gfco.org/

http://www.fns.usda.gov/fdd/facts/nutrition/foodallergenfactsheet.pdf

Sample Breakfast GF Diet

Breakfast
Cheesy grits and orange slices
Cream of rice with nuts and dried fruit added
Fruit and yogurt smoothies
Cottage cheese with apples and cinnamon
Egg, cheese and vegetable omelet with hash brown potatoes
Frittata with corn, egg, sour cream and cheese
Quesadillas made with corn tortillas filled with ham and
cheese
Scrambled eggs and Canadian bacon and grapefruit
sections
Crustless quiche
Table 3- www.gluten.net article The Gluten Free Diet: Can your patient afford it?

Sample Lunch/Dinner GF Diet

Lunch/Dinner
Loaded baked potato with broccoli and cheese
Chef salads (no croutons)
Stir-fry with meat, poultry or seafood and chopped vegetables
served over rice
Chicken or steak fajitas with nachos
Beef or turkey chili served with corn chips and carrot and
celery stick
Meat, poultry or seafood and veggie kabobs served over rice
Baked beans and franks (check labels)
Taco salad
Ground beef or turkey inside a green pepper or cabbage roll
Table 3- www.gluten.net article The Gluten Free Diet: Can your patient afford it?

Sample Snacks on GF Diet

Snacks
Corn or potato chips (beware of flavored chips)
Popcorn
String cheese
Taquitos (corn) and salsa
Nachos
Cheese on a rice cracker
Peanut butter on a rice cake
Celery stuffed with peanut butter or cream cheese
Deviled eggs
Jello, pudding, yogurt
Nuts
Hummus and carrot sticks
Table 3- www.gluten.net article The Gluten Free Diet: Can your patient afford it?

The Celiac Diet ,Series #8 The Gluten Free Diet: Can your patient afford it? Practical Gastroenterology April 2007; 75-84
(http://www.gluten.net/publications.php)

Eating on Campus
Working with the campus food service
Challenges galore
Examples of what others are doing

Adherence even if the options are there

All or nothing approach
Many barriers including

Social pressure
Lack of time / need to plan ahead
Lack of variety / deprivation
Lack of support
Cravings / temptations

Eating Out
Restaurants
Learning to interpret ingredients
Ask waitstaff or chef about ingredients
GF items now available at many restaurants
PF Changs, Outback Steakhouse, Subway, Legal
Seafood, Wendys, Chick-fil-A, Boston Market,
McDonalds, Carrabbas, Dennys, Bonefish Grill

With family and friends

Educating (extended) family about food choices

Travel
AllergyFree Passport and GlutenFree Passport
have launched the iEatOut Gluten & Allergen
Free application
www.glutenfreepassport.com

iPhone and iPod touch users

instant access to safe eating out around the corner from
their homes or around the world

American Celiac Disease Alliance

www.americanceliac.org

Celiac Travel (restaurant cards)

www.celiactravel.com

Additional Web Resources

American Celiac Disease Alliance
www.americanceliac.org

Celiac Sprue Association

www.csaceliacs.info

Childrens Digestive Health and Nutrition

Foundation
www.cdhnf.org

Medline Plus
www.nlm.nih.gov/medlineplus/celiacdisease

Where to find GF foods

Ener-G Foods, Inc. www.ener-g.com 800-331-5222

Gluten-Free Mall www.glutenfree.com
Gluten-free Palace www.glutenfreepalace.com
The Gluten-Free Pantry www.glutenfree.com 800-291-8386
Miss Robens www.allergygrocer.com 800-891-0083
Pamelas Products www.pamelasproducts.com 707-462- 6605
United Natural Foods, Inc. www.unfi.com 800-877-8898
Food For Life Baking Company www.foodforlife.com 800797-5090

Cookbooks and Recipes

Selected Cookbooks

The Essential Gluten-free Grocery Guide

Gluten-free Baking Classics by Annalise Roberts
Gluten-free Diet by Shelley Case
The Gluten-free Gourmet Cooks Fast and Healthy by Bette Hagman
Gluten-free On A Shoestring by Nicole Hunn (also web-site)
The Healthy Gluten-free Life by Tammy Credicott
Wheat-free, Gluten-free Cookbook for Kids and Busy Adults by
Connie Sarros
The 125 Best Gluten-free Recipes by Donna Washburn

Selected Online Recipes

www.gluten.net/recipe-database.aspx
www.simplygluten-free.com

Case Presentation
18 y.o. female incoming first year student
Health Form
Height = 4 11
Weight = 68 pounds
Expected wt. = 94 pounds

Calculated BMI = 13.7

Expected BMI = 19

Concern - ? Anorexia ? Other etiology

Plan
Call student to make appointment pre-arrival

History per PCP

Is "perfectly healthy
Does not have any eating issues
Is vegetarian by religion

No GI symptoms
NVD, abdominal pain, appetite issues

Has normal menses

Specifically no clinical indication of
Crohn's, Ulcerative Colitis, IBD or Celiac Disease

TFTs normal
No record of bone density, EKG, postural vital signs or GI
workup

History taken in our office

Evaluation at age 7 for failure to thrive

Good eater always struggled to gain
Loves food
Enjoys exercise

History (continued)
Meds: multivitamin
Allergies: NKDA
PMH:
10 days early for birth; birth weight 5.5 lbs
Thalassemia trait

Exercise: one hour/day

ROS: negative for feeling cold, headache, dental caries, body
aches, arthralgias, nausea, diarrhea, vomiting, bloating,
abdominal pain
Menarche: age 15
Monthly cycles last 5 - 6 days no missed periods

Dietary History
Vegetarian Diet - has eggs, no fish
Breakfast toast with jam or waffles, maple syrup
butter, chocolate milk
Lunch Subway veggie delight with cheese or 2
slices of pizza
Snack Chips and famous Amos cookies
Dinner Grilled cheese sandwich or Pasta; Indian
food
Fluids Water, juice, or milk; occasional
milkshake

Family and Social History

Dad: age 50 54 tall diabetes
Mom: age 49 52.5 tall no medical
problems
FH: heart disease/HTN paternal
grandparents
SH: rare EtOH; no cigarettes or drugs
No depression or thoughts of self harm
Has wanted to gain weight all life
Excited to be at Bentley

Physical Exam

T: 98.9
HR: 88-90 reg. BP: 120/78-118/70
Ht 411; wt 70.75 lb; BMI = 14.4
Alert, well appearing, well proportioned
Chest: CTA, full breath sounds
Cor: Regular rate and rhythm; no murmurs
Throat: normal oral pharynx
Neck: no nodes; no thyromegaly
Abdomen: soft; no HSM
Extremities: normal reflexes; no lanugo

Labs
CBC, Platelets & Differential
Thalassemia trait found all else normal

Chem 26 Panel / TSH

Normal chemistries
Normal TSH

tTG Ab, IgA

>100 U/ml (negative <5, positive >8)

Gliadin Ab IgA
54 U/ml (negative <11, positive >17)

Bone Density

Plan
Referral to Gastroenterology
Endoscopy and biopsy Marsh 3

Referral to Nutrition
Gluten Free Diet

Referral to Counseling
Referral to Endocrine
Evaluation of osteoporosis / osteopenia
Calcium and Vitamin D supplementation

Regular Follow up

After One Year

August
2008

June
2009

September
2009

GOAL

Weight 68

Weight 72

Weight 72.5 Weight 94

BMI 13.7

BMI 14.5

BMI 14.6

BMI 19

tTG 100

tTG 58

tTG 50

tTG 0 - 8

Issues
Decision to discontinue medical visits
Started mega vitamin therapy on own
Continued intensive program of cultural dancing
several hours per day

Four Years Later

Graduated moved back to home country

Had continued to loosely adhere to diet
Possible small weight gain noted before she left
Reported that family members all tested negative
for celiac
Was advised to follow up with physician at home
for repeat bone density and tTG and cautioned
re: potential long term effects of inadequate
dietary control

Considerations
How do we work within context of illness which
may not be understood in another culture?
How do we deal with parents who do not believe
the diagnosis and the conflict between the
parental recommendations which are different
from the medical recommendations?
How do we separate the concerns of overexercise or possible eating issues from celiac
disease?
Without any symptoms after ingestion of wheat
what is the incentive for a patient to strictly adhere
to dietary recommendations?

Areas of Research

Optimal timing of gluten into diet

Using capsule endoscopy for diagnosis
Using enzymes to break down gluten
Effects of probiotics
Changing gut permeability
Vaccination or desensitization
Hookworms to modify immune response
Search www.clinicaltrials.gov for trials

The Future of Celiac Disease

Increasing awareness among clinicians
Celiac Awareness Campaign www.celiac.nih.gov
Is Your Patient The One?
Provider Points
Celiac Disease News (electronic newsletter)

Increasing awareness of the general public

Tax deduction for excess cost of food
Media exposure
May is Celiac Disease Awareness Month!
(in some states)

Celebrating
Celiac Disease Awareness Month!

Questions?
Thank you!
Contact information:
Marty Reuman Pieper mpieper@bentley.edu
Gerri Taylor gtaylor@bentley.edu
Deanna Busteed deannaconte@yahoo.com