Sorting Through Gluten Free

1. Sorting Through Gluten Free Sandy Arner, RD, LDN Clinical Dietitian James H. Quillen VA Medical Center March 26, 2013

2. Disclosure Slides • Financial Interest I, Sandra Arner, DO NOT have a financial interest/arrangement or affiliation with one or more organizations that could be perceived as a real or apparent conflict of interest in the context of the subject of this presentation • Drugs I, Sandra Arner, DO NOT anticipate discussing any unapproved/ investigative use of a commercial product/device during this activity or presentation

3. Learning Objectives • Describe three symptoms of celiac disease • State two conditions associated with untreated celiac disease • Identify three grain alternatives that are gluten free

4. What Is Celiac Disease (CD) • Autoimmune digestive disease • Damages villi of small intestine • Interferes with absorption of nutrients from food • Those with CD cannot tolerate gluten • Also called • Gluten-sensitive enteropathy • Sprue • Non-tropical sprue • Celiac sprue • It is NOT an allergy

5. Cause of Celiac Disease • Still unknown

6. What is Gluten? • General name for prolamins (storage proteins) in wheat, rye, barley • Toxic prolamins • Gliadin in wheat • Secalin in rye • Hordein in barley

7. Some CD Statistics • 1 in 133 or 1% of American population has Celiac Disease or CD (about 3 million people)¹ • 1 in 141 or 0.71% of Americans have CD² • In 70% of identical twin pairs, both twins have the disease³ • Family members who have an autoimmune disease are at a 25% increased risk of having celiac disease³ ¹Prevalence of Celiac Disease in At-risk and Not-at-risk Groups in the United States. Arch Int. Med. (2003) 163:286 ²The American Journal of Gastroenterology 107, 1538-1544 (October 2012) ³Nationl Foundation For Celiac Awareness, Updated Feb. 28, 2013

8. Statistics (cont’d) • Estimated 85% of Americans who have celiac disease are undiagnosed or misdiagnosed with other conditions¹ • 6-10 years is the average time a person waits to be correctly diagnosed² • 5-22% of celiac patients have an immediate family member (1st degree relative) who also has celiac disease¹ • Burden of disease over four-year period per patient:  • Celiac-free males: $4,019 • Males with CD: $14,191¹ • May is Celiac Awareness Month ¹National Foundation for Celiac Awareness, Updated Feb. 28, 2013 ²Source: Daniel Leffler, MD, MS, The Celiac Center at Beth Israel Deaconness Medical Center

9. Symptoms Celiac Disease • Abdominal pain • Bloating/gas • Diarrhea and/or constipation • Indigestion/reflux (“heartburn”) • Nausea and vomiting • Fatigue/lethargy • Muscle weakness • Itchy skin rash • Tingling/numbness • Mouth sores • Lactose intolerance • Bone pain • Easy skin bruising • Edema of hands and feet • Joint pain • Delayed growth • Weight loss or gain • Osteoporosis • Headaches • Depression/irritability • Hair loss

10. Symptoms of CD (cont’d) • Iron, folate and/or vitamin B12 deficiency • Other vitamin and mineral deficiencies (A,D, E, K, calcium) • Elevated liver enzymes • Discolored teeth • Migraine headaches • Depression • Menstrual irregularities • Infertility in both women and men • Recurrent miscarriages

11. Celiac Disease Risk Factors • An immediate family member with CD • Presence of HLA-DQ2 and HLA-DQ8 genes • About 95% of people with celiac disease have the HLA-DQ2 gene • Most of the remaining 5% have the HLA-DQ8 gene • Major life event, emotional stress, pregnancy, or surgery in those who are genetically predisposed • Those with other autoimmune disease • Those with another genetic disorder • Infants—exposure to gluten before 3 months of age

12. Some Disorders/Conditions Associated More Frequently with CD • Type I diabetes • Thyroid disease • Liver disease • Sjögren’s syndrome • Lupus • Addison’s disease • Scleroderma • Alopecia areata • Rheumatoid arthritis • Turner syndrome • Raynaud’s syndrome

13. Diagnosis of CD • Symptoms • Blood test • Small bowel biopsy • Should be tested while on a gluten-containing diet

14. Serologic Tests • No standardization in testing for diagnosis of CD • Anti-tissue transglutaminase antibodies (tTGA) • Anti-endomysium antibodies (EMA) • Gluten free diet should not be started before blood tests and biopsy

15. Diagnosis—The Biopsy • Diagnosis: Intestinal Biopsy • A biopsy of the small intestine can confirm the findings of the blood test. Celiac disease damages or destroys the villi in the intestine

16. What Does Celiac Disease Look Like?

17. Refractory Celiac Disease • Very small percentage of people with celiac disease do not respond to a gluten-free diet. • May be prescribed glucocorticoids or at times immunosuppressants are indicated to induce remission

18. Dermatitis Herpetiformis (DH) • Another form of celiac disease • Chronic skin condition • Intense burning • Itchy and blistering rash • Often misdiagnosed as eczema, contact dermatitis, allergies, hives, herpes, or psoriasis • Many with DH have varying degrees of small intestinal villous atrophy • Diagnosis—skin biopsy from unaffected skin adjacent to blisters or erosions • Treatment is a strict gluten free diet for life

19. Some Complications of Untreated CD • MalabsorptionMalnutrition • Low blood glucose or swings in blood glucose • Osteoporosis • Infertility • Neurological problems • Lactose intolerance • Cancer

20. Treatment for CD • Only known treatment is strict gluten free diet for life! • Additional vitamin and mineral supplements may be needed to correct malnutrition • Some may also need to eliminate lactose until damaged bowel is healed

21. Contain Gluten (from wheat) • Atta • Bulgur • Couscous • Durum • Einkorn • Emmer • Farina • Graham flour • Hydrolyzed wheat protein • Kamut • Motzoh, Matzoh meal • Modified wheat starch • Seitan • Semolina • Spelt (a form of wheat) • Dinkel • Farro or Faro • Triticale • Wheat • Wheat bran • Wheat flour • Wheat germ • Wheat starch

22. Contain Gluten (from barley) • Ale • Barley (flakes, flour, pearl) • Beer • Brewer’s yeast • Lager • Malt • Malt extract, malt syrup, malt flavoring • Malt vinegar • Malted milk

23. Contain Gluten (from rye) • Rye bread • Rye flour

24. Commonly Have Gluten Red Flags For Gluten “Hidden” Gluten Processed meat Potato chips French fries Breaded foods Malt (made from barley) Hydrolyzed Vegetable Protein (often contains wheat) Sauces Soy sauce (made from soy & wheat) Marinades Gravy Salad dressings Candy Flavored coffees and teas Nutritional supplements Soups • In bread, cereal, pasta, crackers, baked goods • Wheat • Rye • Barley

25. Controversial Oats • Safety of oats much debated • Barley often contaminates oats • Wheat contaminates oats • Only consume pure, uncontaminated oats • Best to be labeled or certified as “gluten free” • Oatmeal • Oat bran • Oat flour • Oats

26. Gluten Free Grains/Flours/Starches • Rice • Corn (maize) • Soy flour • Potato flour • Tapioca • Bean flour • Garfava flour • Sorguhm • Quinoa • Potato flour/starch • Millet • Buckwheat • Arrowroot flour • Amaranth • Teff • Montina® (Indian ice grass) • Flax • Nut flours • Cornmeal • Cornstarch

27. Using Gluten Free Flours • Buy items made with whole grain flour and bean flour to get healthier nutrients • GF often lower in fiber • Purchase products with added vitamins and minerals • Refined carbohydrates often in GF products generally make baked goods higher in calories and total carbohydrate than regular versions • Replacing regular bread, muffins, baked goods for GF products without regards to calories weight gain

28. MAY Contain Gluten • •Brown rice syrup • •Breading & coating mixes • •Croutons • •Energy Bars • •Flour or cereal products • •Imitation bacon • •Imitation seafood • •Marinades • •Panko (Japanese bread crumbs) • •Pastas • •Processed luncheon meats • •Sauces, gravies • •Self-basting poultry • •Soy sauce or soy sauce solids

29. MAY Contain Gluten • •Soup bases • •Stuffings, dressing • •Thickeners (Roux) • •Communion wafers • •Herbal supplements • •Prescription drugs & over-the-counter medications • Lipstick • •Nutritional supplements • •Vitamins & mineral supplements • •Play dough: a potential problem if hands are put on or in the mouth while playing with play dough • Hands should be washed immediately after use

30. Alcohol Beer and Ale Wine, Distilled Alcohol Wine and distilled alcohol are generally safe As long as your healthcare provider allows alcohol • Has gluten from barley malt • ONLY have gluten free beers or ale that are so labeled • And IF your healthcare provider allows

31. Let Food Be Thy Medicine • Incorporate whole foods into gluten free diet • Reverse nutritional deficiencies • Restore gut health

32. Nutrient-Dense Gluten Free Diet • Adhere to a total (100%) gluten free diet • Need nutrient-dense foods to regain health • Need proper nutrition to restore gut health • Focus on whole foods vs. highly processed gluten free packaged foods (& prepare without ingredients that contain gluten) • Meat • Fish • Eggs • Rice • Beans • Fruits • Vegetables

33. Cross-Contamination Concerns • Preparing foods on common surfaces with gluten items • Using utensils that are not thoroughly cleaned after preparing gluten-containing foods • Using a common toaster for GF bread and regular bread is a major source of contamination • Sharing flour sifters with gluten-containing flours • Deep frying foods cooked in oil shared with breaded products containing gluten • Using knives for spreadable condiments for both gluten free and gluten-containing products

34. Label Reading • A must for those with celiac disease • Carefully check the ingredient list

35. Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA) (Public Law 108-282, Title II) of the FDA • Food labels to clearly identify wheat and other common food allergens in list of ingredients • Eight major foods or food groups— • Milk • Eggs • Fish (e.g., bass, cod, flounder) • Crustacean shellfish (e.g., crab, lobster, shrimp) • Tree nuts (e.g., almonds, walnuts, pecans) • Peanuts • Wheat • Soybeans • Develop and finalize rules for term “gluten free” on product labels (not done yet)

36. “Gluten Free” • FDA gluten free labeling to be voluntary • FDA proposing to define the food labeling term "gluten-free" to mean a food bearing this claim does not contain any of the following: • An ingredient that is a "prohibited grain," which refers to any species of wheat (e.g., durum wheat, spelt wheat, or kamut), rye, barley, or their crossbred hybrids • An ingredient (e.g., wheat flour) that is derived from a "prohibited grain" and that has not been processed to remove gluten • An ingredient (e.g., wheat starch) that is derived from a "prohibited grain" that has been processed to remove gluten, if the use of that ingredient results in the presence of 20 micrograms or more gluten per gram of food (i.e., 20 ppm) • Or 20 micrograms or more gluten per gram of food

37. Some Gluten Free Symbols

38. Eating Gluten Free Grocery Shopping Eating Out Must ask, ask, ask Some restaurants do have gluten free menu items • MANY gluten free foods available now • Various stores carry gluten free foods

39. GF Diet Potentially Low in Nutrients • Iron • Folate • Niacin • Vitamin B12 • Calcium • Phosphorus • Zinc • Fiber Source: Academy of Nutrition and Dietetics Celiac Disease Toolkit 2011

40. Assess Biochemical Data & Results of Medical Procedures • Gastrointestinal profile • Intestinal biopsy • Or skin biopsy for DH • Celiac antibodies • IgA-tTG • IgA-EMA • IgA/IgG-DGP • Total IgA • Nutritional anemia profile • Hemoglobin • Hematocrit • Folate • Ferritin • Vitamin B12 • Vitamin profile • Thiamin • Vitamin B6 • 25-hydroxy vitamin D • Mineral profile • Copper • Zinc • Lipid profile • Electrolyte profile • Renal profile • Bone density screening Source: Academy of Nutrition and Dietetics Celiac Disease Toolkit 2011

41. Nutrition Intervention • Education on gluten free diet • Consumption of whole/enriched gluten- free grains & other products • Consideration of MV and mineral supplement • Inclusion of gluten free oats as tolerated • Calcium/vitamin D for reduced bone density • Iron supplementation for iron deficiency anemia • Education on food cross-contamination Source: Academy of Nutrition and Dietetics Celiac Disease Toolkit 2011

42. Reverse Nutritional Deficiencies • Iron • Calcium • Vitamin D • Zinc • Magnesium • Vitamin K • Folate • Vitamin B6 • Vitamin B12 • Fiber

43. Reverse Nutrition Deficiencies (cont’d) • Foods first • Supplements as necessary • Nutrients often cannot be absorbed until intestinal site of absorption heals • Improvement in nutrient stores important • Indicates intestines are healing • Indicates adherence to gluten free diet • Follow up blood to test antibodies and nutrient levels is important

44. Reverse Nutrition Deficiencies (cont’d) • Ensure medications and supplements are gluten free • Be aware of physiological reasons someone may not be absorbing certain nutrients • Then make recommendations and monitor • Provide tips for maximizing nutrient uptake

45. Restore Gut Health • Number one way to improve gut health is removing gluten from diet • May take longer to restore gut health for some • Some may need steps beyond gluten free diet • Digestive health and integrity of gut lining play important roles in immune health

46. Remember • Wheat free is not gluten free • When in doubt, go without • May be contamination in food preparation • Stay symptom free with gluten free • Eating gluten free is work

47. Who Is Buying Gluten Free • Those who suffer from celiac disease • Those who are sensitive to gluten • Those who think gluten free products are healthier • Those who follow a trend in the news

48. Future Possibilities • Gluten-degrading enzymes • Modified grains that lack immunogenic compounds • Zonulin inhibitors that decrease intestinal permeability • Anti-inflammatory therapy • Immunotherapy • Hookworms

49. Tax Deductions • The cost of gluten-free (GF) food that is in EXCESS of the cost of the gluten containing food that you are replacing • The full cost of special items needed for a GF diet may be deducted • If you make a special trip to a store to purchase GF foods, the actual cost of your transportation to and from the store is deductible • The full cost of postage or other delivery expenses for GF foods made by mail order are deductible

50. Helpful Web Sites • Celiac Disease Foundation: http://www.celiac.org • Celiac Sprue Association: http://www.csaceliacs.info • National Foundation for Celiac Awareness: http://www.celiaccentral.org • NIH Celiac Disease Awareness Campaign: http://celiac.nih.gov • National Digestive Diseases Information Clearinghouse http://digestive.niddk.nih.gov • Celiac.com http://www.celiac.com