the gluten free diet - calgary celiac association · the new gluten-free regulation revisions to...
TRANSCRIPT
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
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
Celiac Disease including Dermatitis Herpetiformis and
Non Celiac Gluten Sensitivity
The Diseases
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)
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.
• 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.
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
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...
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
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
The Nature of Celiac Disease
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)
What Happens When We’re Glutened?
The progression of damage to the villi
• 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.
Dermatitis Herpetiformis
What Happens When We’re Glutened?
DH on the elbow DH on the knee
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) PLUS
• Total serum IgA *In Calgary, the lab requisition has a ‘Celiac Screen’ request box.
**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.
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.
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.
Treatment of CD
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.
• 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.
What Happens When We’re Glutened?
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).
Immune Responses
• The Celiac Disease response IgA - tTg (also EMA and DGP response)
This response should not be confused with…
vs.
• Classic Allergies IgE - histamine
• Delayed Food Allergies/Intolerances IgG - delayed, intolerance
(Often used by holistic practitioners and naturopaths)
☺
The Gluten-Free Diet and
The Cereal Grains
The Cereal Grains
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)
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
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
Questionable Products
Baking powder Beverage mixes
Bouillon cubes Cheese spreads
Condiments Dried fruit
Dry roasted nuts *Flavourings
Herbal teas HPP/HVP
Ice cream and yogurt Icing sugar products
Imitation seafood Licorice and candies
Marinades and sauces Modified food starch
Pilaf mixes Processed meats
Puddings Rice and soy beverages
Salad dressing *Seasonings
Seasoned fries Self basting poultry
Smarties** Soups and broths
Soy sauce 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.
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.
☺
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.
☺
Quick and Easy References
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
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.
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.)
Legislation and Labelling
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
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)
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.
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. ☺
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.01.010.1(1).
• Subsection B.01.010.1(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)
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.24.018) when a gluten-free claim is made…
The Gluten-Free Regulation pertains to cross-contamination of gluten-free ingredients.
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
☺
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.24.001 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.
☺
Half a teaspoon
½ tsp.
In a bathtub filled with water (125 litre bathtub)
20 parts per million
Less than a drop
In 2 litres of ice cream (1 drop in 2.5 litres)
20 parts per million
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 250 – 400 grams of GF foods daily, the average person with Celiac Disease could safely consume up to 10 mg of gluten daily without adverse effects.
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.)
☺
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 250-400 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.
☺
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.
☺
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.
☺
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
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
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 gluten-
free foods remain gluten-free.
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.
• 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.
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.
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.
Preventing Contamination &
Cross-contamination
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 gluten-containing foods is unsafe for gluten-free cooking. (Particles and residues)
• Fresh water must always be used for boiling, poaching or steaming.
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 cross-
contamination.
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.
Reliable Websites
Canadian Celiac Association
http://www.celiac.ca
Calgary Chapter (Dr. Decker Butzner, Dr. Paul Beck)
http://www.calgaryceliac.ca
Mass General (Dr. Alessio Fasano)
http://www.massgeneral.org
Mayo Clinic (Dr. Joe Murray)
http://www.mayoclinic.com/health/celiac-disease/
Columbia University (Dr. Peter Green)
http://www.celiacdiseasecenter.columbia.edu
The Gluten Free Diet – Shelley Case, RD
www.glutenfreediet.ca
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.
☺
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.
☺
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.
☺