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)

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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.

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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.

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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

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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.

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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.

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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.

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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.

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