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Where’s the Wheat?

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?.

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Where’s the Wheat?

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  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 www.mayoclinic.com/health/medical/IM02906

  7. Pathophysiology of Celiac Disease From JAMA Patient Page Sept 2009

  8. Pathophysiology • Autoimmune disorderwith 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% Neurological dysfunction 8-14% Short stature 10% Osteoporosis 1.5-3%

  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

  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: • 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

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

  24. Celiac Disease – Team Approach

  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 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

  28. 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

  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 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 • http://www.gfco.org/

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

  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- www.gluten.net 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- www.gluten.net 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- www.gluten.net 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 (http://www.gluten.net/publications.php)

  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 • 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

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