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Where’s the Wheat? Managing celiac disease in the small college setting Presented by Marty Reuman Pieper, MSN, FNP-BC Bentley University Gerri Taylor,

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Presentation on theme: "Where’s the Wheat? Managing celiac disease in the small college setting Presented by Marty Reuman Pieper, MSN, FNP-BC Bentley University Gerri Taylor,"— Presentation transcript:

1 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

2 Answer: Everywhere

3 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

4 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

5 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

6 Normal Small Intestinal Villi

7 Pathophysiology of Celiac Disease From JAMA Patient Page Sept 2009

8 Pathophysiology Autoimmune disorder with environmental trigger –Abnormal response to gluten protein Genetic component Occasional triggers –Infection –Physical injury or surgery –Pregnancy –Severe stress

9 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%

10 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%

11 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

12 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%]

13 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

14 Differential Diagnosis Irritable bowel syndrome Inflammatory bowel disease Intestinal infections Iron deficiency anemia Chronic fatigue syndrome Thyroid disease Eating disorder

15 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

16 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

17 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

18 Pediatric History Records from pediatrician –History including particularly Failure to thrive Diagnoses considered in past –Pertinent labs –Growth chart

19 Family History Celiac disease Other intestinal diseases Autoimmune diseases Thyroid disease Diabetes Genetic syndromes

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

21 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

22 NIH Consensus Statement Identifies six key elements for management: –C onsultation with a skilled dietitian –E ducation about the disease –L ifelong adherence to a gluten-free diet –I dentification and treatment of nutritional deficiencies –A ccess to an advocacy group –C ontinuous long-term follow up by a multidisciplinary team

23 Support from a team is KEY!!! Living with a chronic disease is hard! Lifestyle changes are hard!

24 Celiac Disease – Team Approach Student Health Care Providers NutritionistFood ServicesGenetic CounselorFamily/FriendsTherapist/Counselor

25 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

26 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

27 Support Groups Local –On campus / City / Region National –Celiac Disease Foundation –The Gluten Intolerance Group Online –National Foundation for Celiac Awareness –Celiac Disease Awareness Campaign –Social media

28 Educational Materials Selected Pamphlets –“Navigating the gluten free diet in college” –“What I need to know about celiac disease” –“Gluten-free diet guide for families” Selected Magazines –Gluten-Free Living –Living Without

29 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

30 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

31 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

32 Avoid Obvious Sources Bread Bagels Cakes Cereal Cookies Pasta /noodles Pastries /pies/rolls Beers/Lager/Ales

33 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 PharmacistMedications and Celiac Disease - Tips From a Pharmacist Clan Thompson. Celiac Pocket Guides to Over the Counter Drugs & Prescription Drugs (2007 & 2008) respectively)

34 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

35 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

36 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

37 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

38 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

39 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

40 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

41 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

42 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


44 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- article The Gluten Free Diet: Can your patient afford it?

45 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- article The Gluten Free Diet: Can your patient afford it?

46 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- article The Gluten Free Diet: Can your patient afford it?

47 The Celiac Diet,Series #8 The Gluten Free Diet: Can your patient afford it? Practical Gastroenterology April 2007; 75-84 (

48 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

49 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

50 Travel AllergyFree Passport® and GlutenFree Passport® have launched the iEatOut Gluten & Allergen Free™ application – 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 – Celiac Travel (restaurant cards) –

51 Additional Web Resources American Celiac Disease Alliance Celiac Sprue Association Children’s Digestive Health and Nutrition Foundation Medline Plus

52 Where to find GF foods Ener-G Foods, Inc. 800-331-5222 Gluten-Free Mall Gluten-free Palace The Gluten-Free Pantry 800-291-8386 Miss Roben’s 800-891-0083 Pamela’s Products 707-462- 6605 United Natural Foods, Inc. 800-877-8898 Food For Life Baking Company 800- 797-5090

53 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 – –

54 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

55 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


57 History taken in our office Evaluation at age 7 for “failure to thrive” Good eater – always struggled to gain Loves food Enjoys exercise

58 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

59 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

60 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

61 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

62 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 8) Gliadin Ab IgA –54 U/ml (negative 17)

63 Bone Density

64 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

65 After One Year August 2008 June 2009 September 2009GOAL Weight – 68Weight – 72Weight – 72.5Weight – 94 BMI – 13.7BMI – 14.5BMI – 14.6BMI – 19 tTG – 100tTG – 58tTG – 50tTG – 0 - 8

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

67 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

68 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?

69 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 for

70 The Future of Celiac Disease Increasing awareness among clinicians –Celiac Awareness Campaign “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)

71 Celebrating Celiac Disease Awareness Month!

72 Questions? Thank you! Contact information: Marty Reuman Pieper Gerri Taylor Deanna Busteed

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