Celiac Disease and Gluten Sensitivity. The Diseases, the Diet and the Legislation Community Workshop (Extended Version)

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1 Celiac Disease and Gluten Sensitivity The Diseases, the Diet and the Legislation Community Workshop (Extended Version) revised Mar 2015 Developed and presented by CCA Calgary Chapter

2 Topics for Today The Medical Conditions - Celiac Disease, including Dermatitis Herpetiformis and Non Celiac Gluten Sensitivity The Gluten-Free Diet and the Cereal Grains Legislative Regulations Product Contamination

3 The Diseases Celiac Disease including Dermatitis Herpetiformis and Non Celiac Gluten Sensitivity

4 Celiac Disease - Genetic Properties Celiac Disease (CD) is a true autoimmune disease. The genetic predisposition (HLA), the environmental trigger (Gluten) and the inflammatory response (ttg) are all known. CD is currently the only autoimmune disease for which all three factors are known. Celiac Disease is the most common autoimmune disease recognized in the medical community. (~1% of the population)

5 The Process of Disease Damage Genes determine the risk for developing CD. (HLA DQ2, HLA DQ8) Gluten triggers the abnormal immune response. The intestinal villi become damaged. Nutrients, including carbohydrates, proteins, fats, vitamins and minerals, can no longer be absorbed. This leads to malnutrition and other serious health problems. Intestinal permeability increases. (Leaky Gut) There is a systemic response.

6 The Nature of Celiac Disease CD was formerly thought to be a disease of childhood. It is now recognized as a disease that can occur at any age. CD can be triggered in otherwise healthy, genetically predisposed people when additional stresses are placed on the body, including: childbirth, severe infections, surgery, food poisoning and emotional stress It can present with a multitude of different symptoms.

7 The Nature of Celiac Disease It was once thought that CD had classic symptoms only, including: Abdominal cramping and pain Nausea and/or vomiting Intestinal gas and bloating Diarrhea, including steatorrhea Weight loss Anemia and vitamin deficiencies iron, folate, B12, A, D, E, K

8 The Nature of Celiac Disease It is now recognized as a multi-system disease including additional intestinal symptoms: Weight gain Constipation Lactose intolerance Mouth ulcers (canker sores) And non-intestinal symptoms: Easy bruising of the skin Edema of the hands and ankles Bone and joint pain, including arthritis Osteoporosis Fertility problems, amenorrhea, impotence Depression Nervous system disorders central and peripheral Extreme weakness and fatigue And many others...

9 The Nature of Celiac Disease There are additional symptoms in children, including: Dental enamel defects Delayed puberty Failure to thrive/delayed growth/short stature Abdominal distension Learning difficulties Severe irritability/behavioural changes

10 The Nature of Celiac Disease CD is often associated with some other diseases and conditions, including: Type 1 diabetes Autoimmune thyroid disease Liver enzymes elevations Autoimmune hepatitis Intestinal lymphoma IgA deficiency Addison s disease Down syndrome, Turner s syndrome, Williams syndrome And less commonly: Sjogren s disease Systemic lupus erythematosus Epilepsy Sarcoidosis

11 Frequency of Occurrence Celiac Disease occurs in ~1% of the population. It occurs more frequently in immediate family members: 8-15% of first degree relatives. (Parents, Children, Siblings) 5-8% of second degree relatives. (Grandparents, Grandchildren, Aunts, Uncles)

12 What Happens When We re Glutened? The progression of damage to the villi

13 Dermatitis Herpetiformis Dermatitis Herpetiformis (DH) is an intensely itchy skin rash. It is a form of celiac disease and is often referred to as CD of the skin. People diagnosed with DH will also have intestinal damage, with or without symptoms. The rash symptoms are often treated with dapsone in addition to the GF diet. The mechanism for developing DH is through the ingestion of gluten.

14 What Happens When We re Glutened? DH on the elbow DH on the knee

15 Diagnosing Celiac Disease A series of serologic (blood) tests can assist in the preliminary screening for CD. Serum IgA-tissue transglutaminase testing (IgA-tTG) OR/AND Serum IgA-endomesial antibody testing (IgA-EMA) Total serum IgA *In Calgary, the lab requisition has a Celiac Screen request box. PLUS **DGP is another screening test that is comparable to the ttg and reliable in both young children and in the presence of IgA deficiency. It is not currently available in Alberta. An intestinal biopsy must be performed to confirm the diagnosis of CD.

16 Diagnosing Celiac Disease in Children There are 5 pillars/criteria for Celiac Disease diagnosis (ESPGHAN) Symptoms compatible with CD Positive serology Presence of genetic markers HLA-DQ2, DQ8 Intestinal damage detected by endoscopy/biopsy Symptom reduction following implementation of the GF Diet Meeting 4 out of 5 of these criteria can be used to diagnose some children in some major children's hospitals in Canada.

17 Treatment of CD The only treatment for Celiac Disease is a STRICT GLUTEN-FREE DIET FOR LIFE. The GF Diet should not be started without an accurate biopsy diagnosis of Celiac Disease.

18 What Happens When We re Glutened? Even small amounts of gluten can be harmful to people with celiac disease and can cause continued small bowel damage. (With or without apparent symptoms) ******* The accidental ingestion of gluten does not cause the profound anaphylactic response that is common with peanuts and other allergens.

19 What Happens When We re Glutened? Many people with CD will have immediate intestinal symptoms. Many will have delayed intestinal symptoms. Many will have non-intestinal symptoms. Immediate or delayed Many will have no symptoms but will still have intestinal damage which can lead to other illnesses. The amount of gluten that causes symptoms varies greatly amidst individuals, with some being extremely sensitive.

20 Gluten Sensitivity Scientific research now supports the existence of this distinct condition and that many people can be gluten sensitive without having biopsy proven celiac disease. This research also indicates that Gluten Sensitivity affects ~10% of the general population. Fasano 6%, Ford 30% The symptoms of Gluten Sensitivity are similar to CD symptoms. There are currently no reliable tests to diagnose Gluten Sensitivity. This condition is referred to as Non-Celiac Gluten Sensitivity (NCGS).

21 Immune Responses The Celiac Disease response IgA - ttg (also EMA and DGP response) This response should not be confused with Classic Allergies IgE - histamine vs. Delayed Food Allergies/Intolerances IgG - delayed, intolerance (Often used by holistic practitioners and naturopaths)

22 The Gluten-Free Diet and The Cereal Grains

23 The Cereal Grains

24 Gluten Containing Grains & Grain Products Grasses, Grains, Cereals Wheat including Bulgur Durum Einkorn Emmer Farro Kamut Red Fife Spelt(Dinkel) Barley Rye Triticale Oats* Cereal Binding Couscous Filler Fu Graham flour** Malt Roux Semolina Seitan * Included in the Canadian Gluten-Free Regulation ** Not to be confused with Gram flour (Chick Pea, Dahl)

25 Gluten-Free Grains & Grain Substitutes Corn (Maize) Rice Sorghum Amaranth Arrowroot* Buckwheat Cassava Coconut Dahl (Gram)** Flax Legumes Mesquite Millet Nuts Poi Polenta Potatoes Pulses Quinoa Sago Soy Sweet Potatoes Tapioca Taro Teff Wild Rice Montina (Indian Rice Grass) Protana (Pure Oats) Timtana (Timothy) * A GF Flour not to be confused with Arrowroot Cookies ** Not to be confused with Graham flour

26 Other Gluten-free Foods Fresh meat, poultry, fish and seafood (unseasoned) Fresh vegetables and fruits (including fresh frozen) Eggs Nuts and seeds Legumes Cheese and other dairy lactose intolerance vs milk protein allergy (Lactose intolerance is often associated with Celiac Disease) All products made with gluten-free ingredients

27 Questionable Products Baking powder Bouillon cubes Condiments Dry roasted nuts Herbal teas Ice cream and yogurt Imitation seafood Marinades and sauces Pilaf mixes Puddings Salad dressing Seasoned fries Smarties** Soy sauce Beverage mixes Cheese spreads Dried fruit *Flavourings HPP/HVP Icing sugar products Licorice and candies Modified food starch Processed meats Rice and soy beverages *Seasonings Self basting poultry Soups and broths Worcestershire sauce * The new allergy labelling will clearly include all gluten sources. Remember to review all product labels. Seasonings and flavourings are often overlooked. ** Some alternate M&M products do not contain gluten.

28 Diet vs. Nutrition Caution Flag Everyone has an opinion about Members (and the public) expect you to know The fine line between diet and nutrition The slippery slope Celiac Association volunteers can provide information on diet only, including safe and unsafe products included in the gluten-free diet. Nutritional guidance must be provided by a registered dietitian.

29 Milk and other Dairy Lactose intolerance (sugar) is often associated with Celiac Disease and can improve significantly when the gut heals after the introduction of the Gluten Free diet. vs. Casein intolerance or allergy (protein) and Whey intolerance or allergy (protein) are not associated with celiac disease and will not be impacted by the introduction of the gluten free diet.

30 Quick and Easy References

31 Using Safe Alternatives Many common food products have safe alternatives: Eg. Soy sauce. Safe thickening agents can be used in place of flour: Eg. Potato starch, tapioca starch Many food items have gluten-free alternatives: Eg: Pizza shells, pasta

32 Domestic vs. Commercial Products Many products marketed in regular grocery stores contain different ingredients than their commercial counterparts marketed to restaurants and other high volume commercial facilities. Examples include: Worcestershire sauces, salad dressings, marinades, bouillon bases, pilaf seasonings, flavourings Check with restaurant staff (and staff of other facilities) and review labels carefully to assure safety of ingredients.

33 Thoughts to Consider Thoughts to keep in mind about gluten free choices: Manufacturers do not commonly fortify milled GF grains with essential nutrients including vitamins and minerals. (This appears to be changing) Many gluten free grains and grain substitutes are more calorie dense than gluten containing flours. Many gluten free baked goods use more fats, oils, sugar and eggs to prevent crumbling of the products. Consult a Registered Dietitian to determine optimal nutritional intake on the Gluten Free Diet. (Include current lab results to review any nutrient deficiencies.)

34 Legislation and Labelling

35 Major Concerns Product Labeling Safe and Unsafe Ingredients Hidden Sources of Gluten* Ambiguous Ingredients* Ambiguous Labeling* *With the revised allergy legislation, these concerns have been resolved. (with a few exceptions). Contamination and Cross-Contamination These continue to be of concern

36 What is Gluten? Gluten refers to several different cereal grain storage proteins, or prolamins. Gliadin in wheat Secalin in rye Hordein in barley There is ongoing confusion over references to glutinous rice and corn gluten. (Avena is the protein found in Oats)

37 The New Allergy Regulation The new Allergy Regulation came into effect 4 Aug 2012 In addition to the declaration of the top allergens, The gluten source must be declared when a food contains gluten protein or modified gluten protein from barley, oats, rye, triticale or wheat, including kamut or spelt and must be written in plain language. Information about gluten content can be found in: The INGREDIENT list. The WARNINGS section CONTAINS, MAY CONTAIN. (The may contain statement is a voluntary statement.) The Allergy Regulation pertains to food ingredients.

38 The New Allergy Regulation Information about gluten content can be found in: The INGREDIENT list. The WARNINGS section CONTAINS, MAY CONTAIN. The contains statement refers to gluten that has been added in manufacture. The may contain statement is a voluntary statement. If it is used for one allergen, it must be used for all potential allergens. Cross contamination can occur in products and may not be reflected in the ingredient list or warning statement.

39 The New Gluten-Free Regulation Revisions to the Gluten-Free Regulation also came into effect on 4 Aug 2012 It is prohibited to label, package, sell or advertise a food in a manner likely to create an impression that it is a gluten-free food if the food contains any gluten protein or modified gluten protein, including any gluten protein fraction, referred to in the definition "gluten" in subsection B (1). Subsection B (1) reads: "gluten (a) any gluten protein from the grain of any of the following cereals or the grain of a hybridized strain created from at least one of the following cereals: (i) barley, (ii) oats, (iii) rye, (iv) triticale, or (v) wheat, kamut or spelt; or (b) any modified gluten protein, including any gluten protein fraction, that is derived from the grain of any of the cereals referred to in subparagraphs (a)(i) to (v) or the grain of a hybridized strain referred to in paragraph (a). (gluten)

40 The New Gluten-Free Regulation Also included in the gluten free regulation Based on available scientific evidence, Health Canada considers that gluten-free foods prepared under good manufacturing practices, which contain levels of gluten not exceeding 20 ppm as a result of cross-contamination, meet the health and safety intent of the gluten-free regulation (B ) when a gluten-free claim is made The Gluten-Free Regulation pertains to cross-contamination of gluten-free ingredients.

41 Oats - Yes or No Oats are still included in the gluten free regulation in Canada. (Health Canada is currently reviewing this. An announcement is expected in the next few months.) Pure Oats have been determined to be gluten free and safe in the GF diet*. Until there is further change to the legislation, pure, uncontaminated oats cannot be labelled as GF in Canada. * Consult Health Canada s position on oats for inclusion in the gluten free diet

42 Understanding GF in Canada There is often confusion over gluten free labeling in Canada. In order to be labeled Gluten Free, a product must be specially formulated for the Gluten Free Diet. A "food for special dietary use" is defined in B of the FDR as a food that has been specially processed or formulated to meet the particular requirements of a person: a) in whom a physical or physiological condition exists as a result of a disease, disorder or injury; or b) for whom a particular effect, including but not limited to weight loss, is to be obtained by a controlled intake of foods.

43 20 parts per million Half a teaspoon ½ tsp. In a bathtub filled with water (125 litre bathtub)

44 20 parts per million Less than a drop In 2 litres of ice cream (1 drop in 2.5 litres)

45 20 ppm in Daily Living 20 ppm is only part of the equation. A defined ppm content is essential for industry production and regulation. BUT For individual consumption, volume intake is the more significant part of the equation. Based on the gluten-free regulation (<20 ppm), scientific evidence and the usual eating practices of people on a gluten free diet consuming grams of GF foods daily, the average person with Celiac Disease could safely consume up to 10 mg of gluten daily without adverse effects.

46 How Much is Too Much Volume Intake Research evidence demonstrates that 200 mg of gluten daily causes intestinal damage, usually with symptoms. Some studies show that 50 mg of gluten daily causes mild intestinal injury, usually without symptoms. Some studies show that 10 mg of gluten daily does not cause intestinal injury. (Usual is 4-7 mg) (Some individuals demonstrated symptoms.)

47 How Much is Too Much These studies were carried out over a period of three months. (It is unknown if longer exposure would cause intestinal damage.) The average individual with celiac disease consumes grams of gluten free product daily. If the gluten content is 20 ppm, this amount of product would contain 4-7 mg. This is the basis of accepting <20 ppm as the standard of gluten free for Canadian manufacture and GF labelling.

48 How Much is Too Much Some individuals with celiac disease (and gluten sensitivity) appear to be sensitive to gluten levels significantly less than 20 ppm based on an intake of less than 10 mg daily. It is unclear if they experience symptoms only or symptoms in addition to intestinal damage. Scientific research is continuing.

49 Establishing the GF Context Based on this evidence, less than a teaspoon of pure gluten, (equivalent to 3500 mg), would be the maximum tolerable amount for an entire year.

50 10 milligrams daily Less than one teaspoon of gluten Equivalent to one sugar sweetener for your coffee (3.5 gr) Is the maximum amount considered safe in a year

51 Preventing Contamination and Cross- Contamination In food service industries and facilities. Restaurants and banquet halls Seniors facilities Day care centres School classrooms, lunchrooms and cafeterias Other locations

52 Preventing Contamination & Cross-contamination When preparing a gluten-free meal, it is important to prevent contamination of the gluten-free foods with gluten-containing food particles and residues. Even small amounts of gluten can result in continued intestinal damage for people with CD and DH Care must be taken to ensure that glutenfree foods remain gluten-free.

53 Preventing Contamination & Cross-contamination Select a preparation area that is separate from other food preparation areas. Air-borne flour and other gluten-containing particles can contaminate gluten-free foods. Ensure all preparation surfaces, cooking surfaces and cooking utensils have been thoroughly cleaned, including counter top, meat slicer, grill surface, cutting boards, bowls, knives, utensils, thermometers, cleaning cloths, aprons.

54 Preventing Contamination & Cross-contamination Use dedicated pots, pans, utensils and cutting boards whenever possible. Rivets can trap gluten particles. Rolled edge pans are easier to clean. Scrub with soap and water to ensure removal of gluten-containing particle. Disinfect according to current standards of practice.

55 Preventing Contamination & Cross-contamination Follow impeccable hand washing practices. Use sanitary gloves for food preparation and change them before handling GF foods. Ensure the powder used is gluten-free. Even powder-free gloves can have trace amounts of powder. Become knowledgeable about special needs diets and menu selections. Educational programs are offered through many of the local chapters of the Canadian Celiac Association.

56 Preventing Contamination & Cross-contamination Ensure all ingredients are gluten-free. Check product ingredients regularly. Manufacturers and suppliers can change ingredients without notice. Ensure that anti-caking and flow agents are GF. These agents may not be identified in the ingredient lists.* Use boldly labeled, air tight containers for all products designated as GF. Prepare GF meals before other menu selections * the new allergy labeling requires these agents to be declared.

57 Preventing Contamination & Cross-contamination Clean utensils must be used for each condiment, butter, sauce and all other items. Use individual portions and/or squeeze bottles. Deep fryer oil previously used for glutencontaining foods is unsafe for gluten-free cooking. (Particles and residues) Fresh water must always be used for boiling, poaching or steaming.

58 Preventing Contamination & Cross-contamination Use the top oven racks and refrigerator shelves. Use caution with convection ovens. Use toaster bags to prevent contamination of GF bread products. (Check with the Calgary office for availability.) Bulk bins can be a source for crosscontamination.

59 Using Safe Alternatives Many foods start out gluten-free and are glutened in menu preparation: Eg. Salad croutons Develop clearly identified gluten-free alternatives as part of a standard menu. Arrange buffet tables with gluten-free selections first and separated from gluten-containing selections. Label them.

60 Reliable Websites Canadian Celiac Association Calgary Chapter (Dr. Decker Butzner, Dr. Paul Beck) Mass General (Dr. Alessio Fasano) Mayo Clinic (Dr. Joe Murray) Columbia University (Dr. Peter Green) The Gluten Free Diet Shelley Case, RD

61 Resources Celiacsure /BioCard the home test kit - a useful tool for preliminary screening for CD. (in specific circumstances) It is not a substitute for a proper medical diagnosis. These tests are helpful when physicians are resistant to testing for CD or before naturopaths place their patients on a wheat free and/or gluten free diet. Check the national website for information on availability.

62 Resources EZGluten - Home test kits are available and reliable for most food products. (some exceptions do exist) The tests show gluten content of 10 ppm and greater. They are expensive. Check the national website for information on availability.

63 Genetic Testing Genesure test kits are now available from Glutenpro. The tests use cheek swabs to collect genetic material for testing. The swabs are sent to an FDA registered laboratory and are tested for HLA-DQ2 alpha subunit, HLA-DQ2 beta subunit, and HLA-DQ8 markers. Appox. 40% of the population have these genetic markers, but only ~ 1% of the population have Celiac Disease.

Celiac Disease and the Gluten-Free Diet

Celiac Disease and the Gluten-Free Diet Celiac Disease is an autoimmune disorder affecting 1 in every 133 not at risk Americans. The incidence is substantially higher in the at risk populations i. Celiac