1. Gluten-free Food Service A Systems Approach Lacey Wilson MPH, RD www.TheGlutenFreeNutritionist.blogspot.com

2. About me My perspective – big and small picture Wellness Coach Gluten-free consultant & Advocate Celiac Disease New Mom Blogger Angry Runner Devoted member of Netflix

3. Presentation Objective Introduce you to the gluten-free lifestyle and provide insight going forward with labeling to protect the consumer

4. Presentation Outline Gluten and gluten-free Gluten & Celiac Disease What it really means to live GF GF discourse & common misconceptions Policies (labeling, protocols, inspections)

5. Gluten Protein network in grains – Wheat (durum, einkron, faro, semolina, spelt, graham, kamut, triticale, farina) Rye, Barely – Gliadin and Glutenin Provides structure/shape/stabilizer, texture – Frozen poultry, luncheon meats, dressings/sauces – hair products, makeup Acts as a preservative – Microwave meals, packaged products

6. Gluten is a concern for: Gluten Intolerance Gluten Sensitivity Celiac Disease Anecdotally: other diseases, disorders & ‘weight loss’ All considered a gluten Special Dietary Need (SDN) Medical Necessity

7. Celiac Disease Celiac Disease (CD) is a lifelong inherited autoimmune condition affecting children and adults. When people with CD eat foods that contain gluten, it creates an immune-mediated toxic reaction that causes damage to the small intestine and does not allow food [vital nutrients] to be properly absorbed. Even small amounts [20 ppm] of gluten in foods can affect those with CD and cause health problems. Damage can occur to the small bowel even when there are no symptoms present. - Celiac Disease Foundation

8. Internal Manifestations of CD Flattening of the villi 1 – Villi “capture” nutrients, amino acids, etc. – no absorption leads to nutrient deficiencies sickness and disease T cell regulated Immune response results in chronic inflammation 2 Comorbidities & sickness (‘immuno- compromised) – T cell lymphoma – GI cancers

9. Examples of macroscopic features of villous atrophy detected by wireless capsule endoscopy in celiac disease: A) Normal villi, B) scalloping of the mucosa on circular folds, C) fissuring of the mucosa, D) mosaic pattern Image: http://discoverysedge.mayo.edu/celiac-disease/index.cfm

10. Symptoms/Consequences of Unmanaged CD 1,2,3,4,5 Humoral symptoms – Arthritis – Bone loss (osteoporosis/osteoarthritis) – Loss of tooth enamel – Hair loss – Anxiety, depression, mood – Memory loss – Neuropathy (peripheral nerve cell damage) – Chronic fatigue – Unregulated body temperature – “brain fog” – Infertility – Anemia – Heart burn – Dermatitis herpetiformis – Stunted growth – Blurred vision GI Symptoms – Diarrhea/constipation – Bloating – Cramping – Fatty stool – Vomiting – Loss of villi – Nutrient Deficiency *While a CD ‘reaction’ may not be an acute, visibly noticeable one, chronic exposure leads to comorbidities and cancer.

11. Early Statistics and Estimates 2,3,4 1 in ~100 people have CD – 1.8 million people, yet 1.4 are unaware Estimated that 1/3 of the population carries the gene(s) 4.5 times higher mortality rate in the undiagnosed CD

12. Individual Management of CD GF lifestyle – FDA – “prohibited grains” and other products – *Oats – Life-long GF – Continued: awareness, education, label reading, transparency in food system Pharmaceuticals – Food testing (ex: GlutenTox) Food testing – Deamidation pill (ex: Gluten Ease) Deamidation pill

13. Gluten Intolerance & Sensitivity 6 Medical necessity Symptoms Diagnosis – Elimination diet Tolerate different amounts

14. Gluten-free by Choice Personal choice – No research to support health benefits – A “re-portioning” of the plate Online information not always reputable Unlike any other ‘medical treatment’ – Major source of confusion amongst the public Poses difficulties for those with CD – Gluten-free is becoming a “punch-line”

15. Language & Misconceptions Special Dietary Needs (SDNs) – Sensitivity ≠ Intolerance ≠ Allergy ≠ CD Wheat Allergy v. CD – Acute (immediate danger) v. Progressive (sustained damage)

16. CD & GF Specific Language & Misconceptions GF is a lifestyle, not a diet – Environment, food, care products, pharmaceuticals Wheat-free ≠ Gluten-free Cross-contamination – Occurs when gluten comes in contact with an otherwise GF item or product – Salad bar, buffet line, fryers, toasters Can a person with CD have a ‘little’ gluten? – No. 6

17. Specific Language & Misconceptions 4,7 Gluten cannot be “cooked out” Are some people with CD more ‘sensitive’ than others? – Symptoms v. autoimmune reaction Can one ‘out-grow’ CD? – lifelong disease that requires diligent management with a GF lifestyle. Can health status improve with proper management? – Yes, if diligent on a gfree diet, villi will regenerate.

18. Vulnerable CD Populations Those that are unable to control their food choices. – “captive” populations – Children, adolescents, college students Those that utilize food programs as primary source of food. – Meals On Wheels, Communal-site meals Those displaced from their homes during emergencies – Food banks, shelters …Anyone with CD Chronic exposure

19. FDA & GF 7 “Food Allergen Labeling and Consumer Protection Act of 2004 Act of 2004 1, Title II of Public Law 108-282, enacted on August 2, 2004, which directs the Secretary of Health and Human Services to propose and later make final a rule that defines and permits the use of the food labeling term "gluten-free.“” -FDA *A voluntary process

20. FDA’s Proposed Definition of GF 7 “[A] food bearing this claim in its labeling does not contain any one of the following: – An ingredient that is a prohibited grain – An ingredient that is derived from a prohibited grain and that has not been processed to remove gluten – An ingredient that is derived from a prohibited grain and that has been processed to remove gluten, if the use of that ingredient results in the presence of 20 parts per million (ppm) or more gluten in the food or – 20 ppm or more gluten”

21. FDA’s Allowable GF Synonyms 7 – "free of gluten" – "without gluten" – "no gluten“ – Naturally GF The wording of the claim clearly indicates that all foods of the same type, not just the brand bearing this labeling claim, are gluten-free (e.g., "milk, a gluten-free food," "all milk is gluten-free"); and The food does not contain 20 ppm or more gluten.

22. CD Community Celebrates 7 August 2, 2013 FDA final rule Includes “cross-contact” – Final product

23. GF labeling concerns Cross-contamination 8 Price Gouging – Cost often shifts to the consumer GF foods = billion dollar industry – Ethics of price increases Uniformity in labeling – Communication to consumer – Education component, transparency Consistency in labeling, label placement, ease for consumer – Safety of consumer

24. Third Party GF Labeling Gluten Intolerance Group (GIG) – Certifying arm – Gluten-Free Certification Organization Celiac Sprue Association (CSA) National Foundation for Celiac Awareness (NFCA) National Foundation for Celiac Awareness

25. GF labeling and Dining Out 7 Restaurants are encouraged to comply Not mandatory at this time State and local governments

26. Massachusetts State Model “An Act relative to restaurant training” “By Mr. Fennell of Lynn, a petition (accompanied by bill, House, No. 1876) of Robert F. Fennell relative to food allergy awareness training for restaurant employees. Consumer Protection and Professional Licensure.”

27. 1.Take part in an allergens training or watch training video 2.Menus must instruct customer to make associate aware of any SDN 3.Display Health Department approved poster 4.A manager is deemed “protection manager” 5.Disciplinary action taking under the state sanitary code

28. Additional GF Dining-Out Challenges HACCP concept Points of potential “contamination” – Ordering – Preparation – Service Control Transparency

29. Foodservice SDNs Best Practices Much more than individual education/training – Staff turnover, food prep., etc. Systems changes in addition to individual training is necessary to ensure safety Transparency in menu labeling, ordering, prep and service Knowledgeable & honest staff

30. Systems approach to GF food service – Food environment to the individual Awareness, Policy Development, Manufacturing, Labeling, Education, Enforcement Protect the consumer Support laws and uniformity Succinctly communicate

31. References 1.Miśkiewicz P, Kępczyńska-Nyk A, Bednarczuk T (2012). Coeliac disease in endocrine diseases of autoimmune origin. Endokrynol Pol. 63(3):240-9.Miśkiewicz PKępczyńska-Nyk ABednarczuk TEndokrynol Pol. 2.Sharaiha RZ, Lebwohl B, Reimers L, Bhagat G, Green PH, Neugut AI (2012). Increasing incidence of enteropathy-associated T-cell lymphoma in the United States, 1973-2008. Cancer. 118(15):3786-92.Sharaiha RZLebwohl BReimers LBhagat GGreen PHNeugut AICancer. 3.The Celiac Disease Foundation www.celiac.orgwww.celiac.org 4.Rubio-Tapia A, Murray JA (2010). Celiac disease. Curr Opin Gastroenterol. (2):116- 22.Rubio-Tapia AMurray JACurr Opin Gastroenterol. 5.Rubio-Tapia A, Ludvigsson JF, Brantner TL, Murray JA, Everhart JE (2012). The Prevalence of Celiac Disease in the United States. Am J Gastroenterol. doi: 10.1038/ajg.2012.219.Rubio-Tapia ALudvigsson JFBrantner TLMurray JAEverhart JEAm J Gastroenterol. 6.Catassi C, Bai JC, Bonaz B, Bouma G, Calabrò A, Carroccio A, Castillejo G, Ciacci C, Cristofori F, Dolinsek J, Francavilla R, Elli L, Green P, Holtmeier W, Koehler P, Koletzko S, Meinhold C, Sanders D, Schumann M, Schuppan D, Ullrich R, Vécsei A, Volta U, Zevallos V, Sapone A, Fasano A. (2013). Non-Celiac Gluten sensitivity: the new frontier of gluten related disorders. Nutrients. 26;5(10):3839-53.Non-Celiac Gluten sensitivity: the new frontier of gluten related disorders. 7.The Food and Drug Administration (2013). Questions and Answers: Gluten-free Food Labeling Final Rule. 8.Hollon JR, Cureton PA, Martin ML, Puppa EL, Fasano A (2013). Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet- adherent non-responsive celiac disease patients. BMC Gastroenterol. 13:40.Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet- adherent non-responsive celiac disease patients.