Where’s 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
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~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%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
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%
0%
20%
40%
60%
80%
100%
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%]
– Turner’s syndrome [2-10%]
Complications
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Chronic malabsorption of nutrients and vitamins
Osteoporosis
Infertility / repeated miscarriages
Risk of certain malignancies
– Non-Hodgkin’s lymphoma
– Others of GI tract
• Risk of developing another autoimmune disease
Differential Diagnosis
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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, Crohn’s, “nervous stomach”, recurrent
gastroenteritis
• Pancreatitis, hepatitis
• Autoimmune diseases –
– Thyroid, diabetes, liver disease
– Rheumatic diseases – Sjogren’s, fibromyalgia
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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
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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”
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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
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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
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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
– Maltodextrin–Made 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 glutencontaining 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
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Bouillon cubes
Brown rice syrup
Candy
Chips/potato chips
Cold cuts, hot dogs,
salami, sausage
• Communion wafer
• French fries
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Gravy imitation fish
Rice mixes
Sauces
Seasoned tortilla chips
Self-basting turkey
Soups
Soy sauce
Vegetables in sauce
Safe Flours and Grains
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Rice
Corn
Quinoa
Amaranth
Arrowroot
Buckwheat
Montina
Flax
Job’s tears
Potatoes
Lentils
Millet
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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)
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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
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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 Chang’s, Outback Steakhouse, Subway, Legal
Seafood, Wendy’s, Chick-fil-A, Boston Market,
McDonald’s, Carrabba’s, Denny’s, 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
• Children’s Digestive Health and Nutrition
Foundation
www.cdhnf.org
• Medline Plus
www.nlm.nih.gov/medlineplus/celiacdisease
Where to find GF foods
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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 Roben’s www.allergygrocer.com 800-891-0083
Pamela’s 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
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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
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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 – 5’4” tall – diabetes
• Mom: age 49 – 5’2.5” 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
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T: 98.9
HR: 88-90 reg. BP: 120/78-118/70
Ht 4’11”; 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
Weight – 68
June
2009
Weight – 72
September
2009
GOAL
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
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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
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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