Where’s the Wheat?Managing celiac disease in

the small college setting

Presented by Marty Reuman Pieper, MSN, FNP-BC

Bentley UniversityGerri Taylor, MSN, ANP-BC

Bentley UniversityDeanna 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

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

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% 20% 40% 60% 80% 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%

Short stature 10%

Osteoporosis 1.5-3%

Neurological dysfunction 8-14%

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

• 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

• 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

• 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

Therapist/Counselor

Family/Friends

Genetic Counselor

Food Services

Nutritionist

Health Care Providers

Student

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– 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 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• Job’s 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 quicheTable 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 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 Foundationwww.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 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 800-797-5090

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 – 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

• 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

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 over-exercise 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)

CelebratingCeliac Disease Awareness Month!

Questions?

Thank you!

Contact information:Marty Reuman Pieper mpieper@bentley.edu

Gerri Taylor gtaylor@bentley.edu Deanna Busteed deannaconte@yahoo.com