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COELIAC DISEASE: Dr. Kim Faulkner-Hogg Dietitian Allergy Unit, RPAH, Sydney [email protected] (02) 9515 3323

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Page 1: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

COELIAC DISEASE:

Dr. Kim Faulkner-Hogg

Dietitian

Allergy Unit, RPAH, Sydney

[email protected]

(02) 9515 3323

Page 2: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

WHAT IS COELIAC

DISEASE?

Gluten Ingestion

Inflamed Small Intestinal Mucosa

Villous Atrophy

Gluten-Free Diet

Restoration of Health

Page 3: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

PREVALENCE of

COELIAC DISEASE

• Historically in Caucasians 1:300 - 1:2000

• Ireland and Scandinavia 1: 100

• Algeria in Africa 1:18

• Australian prevalence 1:2501

• Worldwide Screening Diagnosis 1:266 2

• Worldwide Clinical Diagnosis 1:33452

1. Hovell et al, 2001

2. Fasano & Catasi, 2001

Page 4: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

CLASSIC SYMPTOMS

• Malabsorption

• Failure to thrive

• Weight loss

• Muscle wasting

• Diarrhoea

• Abdominal cramp

• Bloating

• Flatus

• Nausea

• Vomiting

• Steatorrhoea

• Weakness

• Bruising

Page 5: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

MINOR NON-SPECIFIC

COMPLAINTS

• Headaches

• Dizziness

• Constipation

• Skin rashes

• Tiredness

• Recurrent mouth ulcers

Page 6: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

OTHER SIGNS

• unexplained iron or folate deficiency

• delayed menarche

• sub-optimal school performance

• apparent food intolerances

• enamel defects of permanent teeth

• infertility in either gender

• recurrent miscarriages

• general malaise

Page 7: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Malabsorption of

• lipid

• carbohydrate

• protein

• iron

• calcium

• magnesium

• vitamins (especially fat soluble ones)

10-20% of first degree relatives have coeliac disease

Page 8: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

RISKS OF UNTREATED DISEASE

• Sub-optimal nutrient absorption– of protein, fat, CHO, iron,

calcium, magnesium, zinc and vitamins

• Low nutritional status– Anaemia

– Reduced bone mineral density

• Increased risk of malignancy

• Infertility

• Neurological disorders– Ataxia

– Epilepsy

– Early Onset Dementia

• Liver disorders

• Peripheral neuropathy

Page 9: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Diagnosis of Coeliac Disease

1. Initially a blood screening test looking for coeliac related antibodies

2. Secondly a small bowel biopsy to look for damage to the small bowel

3. Repeat biopsy generally 6 months later to show recovery of the small bowel

Page 10: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

The European Society for Paediatric

Gastroenterology and Nutrition (ESPGAN)

• First biopsy:

• Must show small bowel mucosal atrophy on

a gluten containing diet

• Second biopsy:

• Small bowel should show improvement or

normalization while on a GFD.

• The need for gluten challenge and 3rd biopsy is

assessed individually.

DIAGNOSIS

Page 11: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Coeliac disease

• Normal

• PVA

– partial villous atrophy

• STVA

– subtotal villous

atrophy

• TVA

– total villous atrophy

Page 12: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

OTHER CAUSES OF ABNORMAL SMALL

BOWEL MUCOSA

• Cow‟s milk protein

intolerance

• Soya protein intolerance

• Immunodeficiency

syndromes

• Eosinophilic

gastroenteropathy

• Intractable diarrhoea of

infancy

• Gastritis in children

• Parasites, eg giardia

• Tuberculosis

• Human immunodeficiency

virus

• Contaminated bowel

syndrome

• Whipple‟s disease

• Arterial disease of the

small intestine

• Drug & radiation damage

Howdle P. The Practitioner, 1994;238:687-691

Page 13: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

GLUTEN-FREE FOODS

• DAIRY

– milk and cheese

• FRUIT

• VEGETABLES

• PULSES

– legumes, beans, nuts and seeds

• MEAT

– beef, chicken, fish

• EGGS

What can be eaten?

Page 14: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

GLUTEN-FREE GRAINS

• Maize / Corn

• Rice

• Soy

• Buckwheat

• Millet

• Sorghum

• Tapioca

• Quinoa

• Arrowroot

• Amaranth

What can be eaten?

Page 15: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

GLUTEN SOURCES

• Wheat

• Triticale (hybrid of wheat and rye)

• Rye

• Barley

• Possibly oats: controversial

Listed in decreasing order of gluten quantity

Page 16: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

SEROLOGICAL SCREENING TESTS

Blood tests cannot diagnose coeliac disease

Blood screening tests available are:

• Anti-gliadin anti-body

• IgA and IgG

• Anti-endomysial anti-body

• IgA and IgG

• Anti-transglutaminase anti-body

Page 17: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Reported Sensitivities and Specificities of Laboratory

Tests

Serological Test *Sensitivity

(%)

*Specificity

(%)

IgA AGA (antigliadin antibody) 75 - 90 82 - 95

IgG AGA 69 - 85 73 - 90

IgA AEA immunofluorescence

assay

85 - 98 97 - 100

tTG (ELISA, guinea pig tissue) 95 - 98 94 - 95

tTG (Dot blot, human tissue) 93 99

* The sensitivity and specificity vary greatly with the different laboratories.

Adapted from Farrell & Kelly, 2002

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DIAGNOSING COELIAC DISEASE

Gluten must be eaten for the blood & biopsy

tests to be valid

children: eat gluten freely

adults : 30g wheat-based cereal and 2 slices

bread per day

quantities consumed for 3-6 weeks prior to

biopsy

Page 19: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

DIAGNOSIS

• Gold Standard

– Small bowel biopsy

• Markers of disease progression??

– Low enzyme levels

• lactase

• sucrase

• alkaline phosphatase

– High intra-epithelial lymphocytes (IEL)

Page 20: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Healthy

Person

Normal Histology

Normal IEL‟s

Abnormal Antibodies

SymptomsSmall bowel biopsy

0

Silent Coeliac

Disease

Abnormal Histology

& Increase in IEL‟s0

Active Coeliac

Disease

Abnormal Histology

& Increase in IEL‟s++

Potential

Coeliac

Disease

Normal Histology

& Increase in IEL‟S0

Latent Coeliac

Disease

+ or 0

Normal Histology

Normal IEL‟s

+ or 0Abnormal Histology

& Increase in IEL‟s

Page 21: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Endosperm (flour-10-12%

protein) is washed with

water to separate the

protein from the starch

PROTEIN

(50-80% gluten)

WHEAT

STARCH

Water

Sodium

Chloride

Ethanol

ALBUMINS

GLOBULINS

GLUTELIN

(GLUTENINS)

PROLAMIN

(GLIADINS)

GLUTEN

Ciclitira et al. Panminerva Med, 1991;33:75-82

Skerritt et al. Panminerva Med, 1991;33:65-74

Page 22: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

GLUTEN

WHAT IS IT?

• The main protein in wheat flour

• ~equal mixture of glutenin (a glutelin) and gliadin (a prolamin)

• Gluten makes rising possible

– Gluten stretches around trapped air. It sets when cooked

WHAT CAUSES THE

DAMAGE?

• The alcohol soluble

prolamin; (called gliadin in

wheat)

• AND the glutelins; (called

glutenin in wheat)

Page 23: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Damage occurs from the prolamin and

glutelin portions

• WHEAT prolamin GLIADIN GLUTENIN

• RYE prolamin SECALIN

• BARLEY prolamin HORDEIN HORDENIN

• OATS prolamin AVENIN

PROLAMIN GLUTELIN

Page 24: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

• The gliadins and glutenins are the storage proteins of wheat endosperm and they tend to be rich in asparagine, glutamine, arginine or proline but very low in nutritionally important amino acids lysine, tryptophan and methionine

Abrol et al., 1971; Derbyshire et al., 1976; Kirkman et al., 1982;

Larkins 1981; Spencer and Huggins 1982

GLUTEN

Page 25: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Husk &

germ

removed

during

milling

FLOUR: 10 -12 % proteinPROTEIN

WHEAT STARCH (~0.02% Gl)

reagent added

heat

cooling

sieveDEXTRIN (~0.01%Gl)

STARCH SLURRY

modificationMODIFIED STARCHES

(~0.01%Gl)

(thickeners 1400-1450)mixing, enzymes,

heat, reaction, filtration,

ion exchange, evaporationGLUCOSE SYRUP (<0.0005%Gl)

crystallization,

centrifuge,

reagent, filter

CARAMEL COLOUR

(<0.0005%Gl)

GLUCOSE MIXTURE

water

NB. 5 ppm

NB. 200ppm

Page 26: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

VARYING GLUTEN QUANTITIES

*If derived from wheat

Allergy Unit RPAHLevel is decreasing

Page 27: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

„GLUTEN-FREE‟ (GF)

FOOD LABELLING STANDARDS

CODEX ALIMENTARIUS: (Europe)

“Gluten-free” = < 3g /kg of protein from a

gluten-containing grain

CANADIAN FOOD STANDARD:

“Gluten-free” = naturally gluten-free (by nature)

Contamination cannot exceed 20ppm

(The Codex is moving towards GF containing less than 200 ppm gluten

& “Naturally GF” labeling a food containing less than 20ppm of gluten)

AMERICAN FOOD STANDARD:(applies in 2008)

“Gluten-free” = detectable gluten cannot exceed 20ppm

Page 28: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

„GLUTEN-FREE‟ FOOD

LABELLING STANDARDS

There is no single, standard definition of a gluten-free diet

AUSTRALIAN FOOD STANDARDS:

“Gluten-free” = no oats or malt, or products

derived from them AND no detectable gluten

(<0.0005 % gluten; 5ppm)

“Low Gluten” = cannot contain more than 0.002%

gluten (200 parts per million). Oats and malt

products could be used.

1.

2.

Page 29: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

The gluten-free food standard is not a medical prescription

• The food standards are designed to produce food for a large population of people with coeliac disease.

• Doctors and dietitians can individualize ingredients to tailor the diet to the requirements of each patient.

Page 30: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

THE GLUTEN-FREE DIET

• There is no legislation for a gluten-free DIET

• The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the disease, about what ingredients to include in foods they make and purchase

• A GFD rarely contains zero gluten

• Average gluten intake is 30mg gluten/day (Codex-GFD) 1

• Normal dietary gluten intake is 10-14g gluten/day (i.e. 10000-14000mg)

1. Kaukinen et al. Scand J Gastro, 1999;34(2):163-169

Page 31: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

WHAT ADVICE SHOULD

WE BE GIVING?

• Cancer risk

• Symptom persistence

• Biopsy outcome

Page 32: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

CANCER RISK

• Intestinal lymphoma

• Adenocarcinoma of the small intestine

• Adenocarcinoma of the pharynx

• Adenocarcinoma of the oesophogus

• Primary liver cancer

• T-cell non-Hodgkin lymphoma of the upper

intestine

• Enteropathy-associated T-cell lymphoma

(rare with poor outcome)

Catassi C et al. Gastroenterology 2005;128:S79-S86

CD is associated with increased risk of:

Page 33: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

CANCER RISK

• Before diagnosis of CD

• With in 2 years of the diagnosis of CD

• These cancers are rarely seen in those

adhering to long-term GFD‟s

• Many years of gluten exposure before

starting the GFD increase the risk of

developing cancer

These cancers are generally seen in a person

Studies suggest a GFD protects from these forms of

cancer development

Catassi C et al. Gastroenterology 2005;128:S79-S86

Page 34: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

UK CANCER STUDY

T-cell lymphoma: late complication in 5-10% of cases

Normal diet

Reduced gluten diet

Gluten-free diet :- (Codex Alimentarius

guidelines used in the United Kingdom)

Holmes et al. Gut 1989; 30: 333-338.

Page 35: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

•“The results indicate that for coeliac patients

who have taken a GFD for 5 years or more, the

risk of developing cancer over all sites is not

increased when compared with the general

population. The risk is increased, however, in

those taking a reduced gluten, or a normal

diet.”

CANCER CONCLUSION

Holmes et al. Gut 1989; 30: 333-338.

Page 36: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

SYMPTOMSAustralian Study:

Coeliacs removed malt and wheat starch from their diet

• Symptoms improved in 15 of 22 (68%) in 3 months

• 8 of 22 (36%) required no further interventionFaulkner-Hogg, Selby & Loblay. Scand J Gastro,1999; (8):784-789

Canadian Study:

Coeliacs never eaten wheat starch asked to eat it daily

• 15 of 17 developed symptoms immediately, or over the

next 10 months.

• The 14 in the Control group remained symptom free

Chartrand L. et al. JADA June 1997; 97 (6): 612-618.

Page 37: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

SYMPTOMS from oats

British Medical Association:

12 week contaminant-free oat challenge in 19 adults

• 2 developed bloating, abdominal discomfort and or a

rash Lundin KEA et al. Gut, 2003; 52:1649-1652

Finish Study:

5 year follow-up of 43 people eating oats

• initially 5 drop outs: 2 with rash, 2 with abdominal

symptoms and 2 gave no reason

Janatuinen EK et al. The New England Journal of Medicine 1995, Oct;333:1033-1037.

Page 38: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Wheat starch, malt and oats

cause symptoms in

only SOME people

with coeliac disease.

SYMPTOM CONCLUSION

Page 39: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Faulkner-Hogg, Selby & Loblay. Scand J Gastroenterol 1999; (8):784-789.

Australian Study:

Withdrawal of wheat starch and malt for 3 months

• No change in the biopsy outcomes; villous

improvement was not seen

United Kingdom Study:

6 week daily ingestion of wheat starch product

• No villous atrophy occurred

Ciclitara et al. Clinical Nutrition 1985:39C;303-308.

BIOPSY: short-term

Page 40: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Catassi C, et al. Gut 1993;34:1515-1519.

Group 1

100mg gliadin / day (200mg gluten) Minimal IEL changes

No biopsy height damage

Group 2

500mg gliadin / day : (1 g gluten)More pronounced changes in both IEL and

villi height

BIOPSY: 4 week short term studyStudy done in children

Page 41: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

BIOPSY: short-term

Capsules of gluten given daily for 90 days to 33 CD

adults with normal biopsies

Biopsy performed before and after capsules

• 10 mg gluten did not cause mucosal damage

• 50 mg gluten caused minimal histological damage

(and 15% regained symptoms)

He suggests there may be a threshold of tolerable

gluten

Catassi Cet al. American Gastroenterological Assoc 2005 Abstract only

Page 42: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Gluten content of diets

30

20

10

0

14000

12000

10000

8000

6000

Normal diet Codex-GFD NDG-GFD

4000

Normal dietary gluten intake:

10-14 grams gluten/day

European GFD average gluten intake:

30 mg gluten/day (Codex-GFD)1

Australian GFD average gluten intake:

0-4 mg gluten/day

1. Kaukinen et al. Scand J Gastro, 1999;34(2):163-169

Page 43: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

BIOPSY: longer-term

Swedish Study:

• Study outline

– 52 children & adults

– Average gluten eaten was 34mg/day (R=5-150)

– Mean 10 months in the study (R: 6-24)

• Conclusion

– No damage to the biopsy

– Some symptom persistence

Kaukinen et al, Scand J Gastro, 1999;34(2):163-169.

Page 44: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

BIOPSY: longer-term

Australian 2 year follow-up study:

• Study outline

• 39 subjects

• Diet excluded wheat starch and malt

• 2 years: mean gluten intake 3-4mg /day

• Conclusion

• Abnormal biopsy results did not return to normal

due to excluding Codex-gluten ingredients

• There is no significant difference in the gluten

intakes in those whose biopsy changed from normal

to abnormal or abnormal to normal, during the 2

year period.Faulkner-Hogg, Selby and Loblay:-unpublished to date

Page 45: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

BIOPSY: Oats

British Medical Association:

12 week oat challenge in 19 adults

• Consumed 50g contaminant free oats per day

• 1 developed severe villous atrophy to oats

Lundin KEA et al. Gut, 2003; 52:1649-1652

Janatuinen EK et al. Gut, 2002;50:332-335.

Finnish Study:

5 year follow-up on free consumption of contaminant free

oats

• 45 began the study and 23 lasted the 5 years

• Concluded no biopsy damage. Abnormal biopsies were

treated as non compliance

Page 46: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

50mg gluten per day caused minimal damage in 1 study

100mg gliadin (200mg gluten) per day causes minimal villous damage.

500mg gliadin (1g gluten) per day causes definite villous damage

The small number of studies appear to suggest that the ingestion of wheat starch and malt, in the amounts generally consumed in Europe, (mean 34mg gluten /day) in products labelled as gluten free, does not lead to damage of the small bowel mucosa.

The Australian study did not see an improvement in biopsy outcomes with prolonged avoidance of malt and wheat starch

50g oats per day can damage the mucosa in some people

BIOPSY CONCLUSION

Page 47: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Small amounts of gluten are found in oats, wheat starch, malt and some products derived from these.

Cancer

After 5 years, a gluten-free diet containing wheat starch and malt, can still decrease the risks of developing coeliac related cancers.

Small Bowel Mucosa

European studies suggest wheat starch does not cause mucosal damage

The removal of wheat starch and malt for 2 years, did not improve the small bowel mucosa in most subjects in the Australian study.

Oats can cause mucosal damage

Symptoms

However some people are more symptomatic when consuming these trace amounts of gluten [oats, wheat starch & malt].

OVERALL CONCLUSIONS

Page 48: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Perhaps there is NOT ONE GFD prescription to suit everyone.

• The Codex Alimentarius uses the concept that „gluten-

free‟ refers to a harmless level of gluten when ingested

indefinitely

• Doctors and dietitians can use repeated assessments to

help tailor the diet to the persons sensitivities

• Some of our clients may be able to use some Codex

defined ingredients periodically…such as wheat starch

Page 49: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

100mg gliadin 200mg gluten 2.5g wheat flour1

20mg gluten = 100g Codex wheat starch2

~ ≤0.02% gluten in Australian wheat starch3

Residual Gluten

1. Catassi C, et al. Gut 1993;34:1515-1519

2. Hischenhuber C et al. Aliment Pharmacol Ther, 2005;23:559-575

3. Wheat Starch Australia (verbal 1993)

Codex & Australian wheat starch

100mg gliadin 200mg gluten 1000g Codex/Oz wheat starch

25mg gliadin 50mg gluten 250g Codex/Oz wheat starch

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GLUTEN CONTENT OF SOME CONTROVERSIAL FOODS

• 100g icing mixture has ~ 1mg gluten– (has an upper limit of 5% wheatstarch)

• 100g rice bubbles has ~ 0.82 mg gluten– (contains 0.02% malt extract)

• 100g soy milk has ~ 0.08 mg gluten– (contains 3-4 % maltodextrin)

• 1 communion wafer has <1mg gluten– (7 L water, 4000g flour, makes 26000 wafers)

• 100 g white sauce has ~ 33mg gluten– With wheat cornflour

• 100g jelly beans has ~ 1.4 mg gluten– (7% wheatstarch)

(Based on malt

Figures)

Page 51: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Biopsy damage & gluten intake proposal

60

40

20

0

180

160

140

120

100

Codex-GFD1NDG-GFD

80

1. Kaukinen et al. Scand J Gastro,

1999;34(2):163-169

200

210

Normal diet

Biopsy damage

Page 52: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Perhaps there is NOT ONE GFD prescription to suit everyone.

Repeated assessments can help tailor the diet to the persons sensitivities.

Page 53: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Allowed Ingredients for the newly diagnosed

*If derived from wheat

Allergy Unit RPAH

Page 54: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the
Page 55: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

Combining the TABLE with the Coeliac Society SYMBOLS

Page 56: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

PATHOGENESIS

• Environmental

– Breastfeeding

• May decreases risk of developing CD in some

circumstances

– Gluten exposure

• More CD in cultures who eats the most wheat

– Twin studies

• 25% discordance suggests environmental factors

involved

Page 57: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

PATHOGENESIS

• Genetic Factors

− 10% increased prevalence in first degree relatives

− 75% twin concordance

− Human leukocyte antigen (HLA) similarity

• HLA-DQ2, HLA-DQ8

General population genes

HLA DQ2 or DQ8

95-98% of people with CD

Kagnoff M,

Gastroenterology 2005;

128:S10-S18

Page 58: Degree of wheat and gluten avoidance in coeliac disease ... · • The ingredients allowed in the LABELING of a gluten-free food influences the advice given to the person with the

PATHOGENESIS

GRAIN PROLAMIN % of prolamin in

the protein

Wheat Gliadin 40-50

Rye Secalin 30-50

Barley Hordein 35-45

Oats Avenin 5-15

• Alcohol soluble portion of the gluten molecule

• Gliadin, secalin & hordein contain a 33 αα sequence not

broken down by digestive enzymes

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PATHOGENESIS

• Prolamins

– Large quantities of glutamine and proline αα‟s

– Spacing of the gln & pro determine deamidation

– Deamidation of gln to glutamic acid by tissue

transglutaminase (tTG) begins the immune response by

creating a negatively charged protein

• Deamidation enhances binding to the negatively

charged HLA-DQ2 / HLA-DQ8 grooves.

• This triggers a T-cell response

– Mucosal destruction

– Antibody production to gluten and tTG

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THE OAT CONTROVERSY

Exclusion of oats has been debated since the 1950‟s.

• Doubt due to:

– Older imprecise testing methods used

– Inability to detect comparable differences

– Differences between the wheat and oat prolamins

– Not knowing how the damage is done.

– Small numbers tested

– Short duration of tests

– Determining a viable outcome measure

• Biopsy outcome vs symptom occurrence

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THE OAT CONTROVERSY

In 2004: study consensus indicates that 50g oats per day is OK for most adults, while 25g oats per day is recommended for children with CD.

– Most people did not experience symptoms or mucosal damage from oats

– A small number of people are symptomatic

– Even less develop mucosal damage

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THE OAT CONTROVERSY

• OATS ARE NOT GLUTEN-FREE

• Studies all used uncontaminated oats

• Oats in Australia are contaminated

– 0.004 – 0.005% gluten (40-50 parts per million)

– Therefore OATS remain excluded from the Australian gluten-free food standard

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THE OAT CONTROVERSY

Gramineae

Pooideae

Chloridiodeae

Bambusoideae

“Triticeae”

–wheat: gliadin (40-50%)

–rye: secalin (30-50%)

–barley: hordein (35-45%)

“Aveneae”

–oats: avenin (5-15%)

Panicoideae

Corn

Sorghum

Millet

Rice

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THE OAT CONTROVERSY

Why are oats tolerated by most?

1. Oats contain very small amounts of damaging prolamin compared with wheat?

• They are taxonomically related to wheat but

• They only have 5-15% avenin

2. The oat prolamin itself does not contain many disease activating αα sequences that remain undigested by gut enzymes

• Wheat contains ~ 50

• Rye contains ~ 60

• Barley contains ~ 35

• Oats contain few disease activating sequences

Kagnoff M, Gastroenterology 2005;128:S10-S18

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OATS; Summary

• ~15% coeliacs eating oats develop symptoms. (my unquotable figure)

• Fewer develop biopsy damage

• Finland, Sweden, Norway & the United Kingdom are consuming contaminant free oats while on a GFD.

• American Gastroenterological Society allows people to trial oats

• Currently OATS are excluded in the Australian Gluten- Free Food Standard

• Oats could be incorporated into the Low Gluten Food Standard.

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OATS Summary

Some patients will be able to tolerate oats

e.g. Many asymptomatic clients

eg: IDDM, anaemic or non GI centered

How to monitor outcome?

Blood tissue transglutaminase antibodies at baseline and then

after 6 months and one year

(Freedom Foods sells and uncontaminated oat cereal)

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Clinical Disorders Associated with Coeliac Disease.

• Gastrointestinal

– Liver disease

– Mouth ulcers

– IBS

– Adenocarcinoma

• Neurological

– Epilepsy

– Ataxia

– Peripheral Neuropathy

• Psychiatric

– Depression

– Schizophrenia

• Endocrine– IDDM– Infertility both sexes– Thyroid disease– Addison’s disease

• Renal– IgA nephropathy

• Locomotor– Osteopenia/porosis– Arthritis

• Dermatological– Dermatitis herpetiformis

Duggan JM. Coeliac Disease the great imitator. MJA 2004;180(10):524-526.

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DERMATITIS HERPETIFORMIS

• Skin rash of itchy

blisters on elbows knees

and buttocks

• Most have coeliac

disease

• IgA deposits in the skin

• Sulpher drugs

• Gluten-free diet for life

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AUTOIMMUNE THYROID

DISEASE (ATD)

The most commonly associated autoimmune

disorder

Occurs in 14-30% of patients with CD

1 in 30 adults with ATD develop coeliac disease.

People can have either hyper or hypo thyroid

disease

Research differs about whether the GFD improves

thyroid function

ATD shares a common genetic background with

CD

Velluzzi et al, Am J Gastroenterol, 1998;93:976-979 &

Larizza et al, The Journal of Pediatrics, 2001;139(5):738-740

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DIABETES

IDDM highly linked with coeliac disease

Usually diabetes is diagnosed before coeliac disease

1:45-50 (2-5%) of children with IDDM will have

coeliac disease

• silent coeliac disease

• delayed growth, mild GI, low iron

1:50 adults with IDDM & 1:340 adults with NIDDM &

CD

• silent coeliac disease

• anaemia, mild GI symptoms

Begin a gluten-free diet ASAP

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• IDDM children are screened for CD

• Usually less symptomatic

• Usually more issues with compliance

• ?? More relaxed diet approach

• Gluten-free foods tend to have a higher glycaemic

index

• Oats have a low glycaemic index, if tolerated

• Glucose levels require monitoring

• Insulin regime may alter

DIABETES and COELIAC DISEASE

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OSTEOPOROSIS

• OSTOEPENIA, or low bone mineral density,

can lead to OSTEOPOROSIS if bone loss

continues

• Those with untreated coeliac disease have

more osteoporosis

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OSTEOPOROSIS:Contributing Factors to Low Bone Mineral Content

• Abnormal biopsy

– absorption of calcium

– absorption of Vitamin D

– absorption of fatty acids

• Secondary

hyperparathyroidism

– the loss of bone mineral

– increased need for vit D

– efficiency of vitamin D

uptake receptor altered

• Lactose Intolerance

– calcium intake

• Amenorrhoea

• No exercise

• Smoking and caffeine intake

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OSTEOPOROSIS:Treatment Options

• Gluten-free Diet

– may not promote re-mineralization

• slows down the progression of the disease

– vitamin D receptor works a little more

efficiently

• Exercise

– weight bearing exercise is beneficial

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OSTEOPOROSIS:Treatment Options

• Hormone Replacement Therapy

– for women, this slows the progression

• Medication

– „Biphosphanates‟

• high cost

• Calcium

– 1.5g per day has been proposed for middle-

aged coeliacs

– any calcium salt supplement is acceptable if

taken for long enough

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INTRODUCING GLUTEN TO BABIES

• Formulae should be gluten free

• Breast feeding is generally recommended

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INTRODUCING GLUTEN TO BABIES

• Gluten is with-held from the babies diet until the age of one, if at least one parent has CD– delays the symptoms but does not prevent the disease

– hoped to prevent some babies getting coeliac disease

• At age one introduce gluten foods– look for change in bowel habit

– irritability

– signs of pain and distress

– longer-term…look for delayed growth if the child appears to be asymptomatic

Traditionally

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INTRODUCING GLUTEN TO BABIES

• No current agreed upon guidelines

• Conflicting results in papers

1. Prolonged breast feeding thought to be protective

i. May decrease the amount of gluten the baby receives

ii. Breast milk protects against gastrointestinal infections

a. Infection → increased gut permiability

b. Infection → increased tTG expression

iii. Human milk IgA antibodies may decrease the immune response to ingested gluten

Recent thoughts on the issue:

Akobend AK et al. Arch Dis Child, 2006;91:39-43

Ivarsson A et al. Am J Clin Nutr, 2002;75:914-921

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INTRODUCING GLUTEN TO BABIES

2. Quantity of gluten eaten should be small

i. Those diagnosed with CD had greater quantities of gluten than those without CD

ii. Avoid gluten follow-on formulaes

Recent thoughts on the issue:

Ivarsson A et al. Am J Clin Nutr, 2002;75:914-921

Fälth-Magnusson et al. Pediatr Allergy Immunol, 1996;7:1-5

Farrell RJ. JAMA, 2005;293(19):2343-2351

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INTRODUCING GLUTEN TO BABIES

3. Introduce gluten between 4-9 months

• Controversial

a. Some say 4-6 months and not after 7 months

b. Others say 6-9 months

c. Agree on not before 4 months

d. Is it that gluten quantity is less when they are younger…and not the timing that is important?

Recent thoughts on the issue:

Challacombe DN et al. Arch Dis Child, 1998;79(2):198-199

Farrell RJ. JAMA, 2005;293(19):2343-2351

Ivarsson A et al. Am J Clin Nutr, 2002;75:914-921

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INTRODUCING GLUTEN TO BABIES

• Introduce gluten while breast feeding–Perhaps human milk IgA antibodies decrease the

immune response to ingested gluten so it becomes better

tolerated

–Perhaps less gluten is eaten while weaning from breast

(mostly referring to absence of gluten formulaes)

Recent thoughts on the issue:

Auricchio S et al. J Paediatr Gastroenterol Nutr, 1983;2:428-433

Fälth-Magnusson et al. Pediatr Allergy Immunol, 1996;7:1-5

Ivarsson A et al. Am J Clin Nutr, 2002;75:914-921

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INTRODUCING GLUTEN TO BABIES

USA suggests introducing gluten between 6-9 months as per the general population

Sweden suggests introducing gluten between 4-6 months, while the general population do this after 6 months

Australia does not have a general protocol although introducing solids to babies is now not recommended to begin until 6 months

Recent thoughts on the issue:

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INTRODUCING GLUTEN TO BABIES

• The least reproducible result was the timing of the gluten introduction as the beneficial effect may be due to gluten quantity and not timing at all.

Perhaps in Australia????

– Prolonged breast feeding should be encouraged until several months after gluten has been introduced

– Gluten introduction could be between 6-9 months

– Small amounts should be introduced slowly

– Mix gluten grain foods with GF foods until well after age 1

Recent thoughts on the issue:

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• The biopsy generally always returns to normal in children

• Symptomatic improvement is usually faster and more complete than adults

• GFD‟s begun before age 4, show better long-term compliance

• Early GFD‟s reduce the risk of developing associated disorders

• Early GFD‟s allow for peak bone mineral density to be obtained in teen years

CHILDREN and the GFD

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COELIAC SOCIETIES

All clients should join the Coeliac Society

• Membership ~$33 per year + $35 annually

– Handbook on coeliac disease

– Ingredient List booklet

– Quarterly magazine

• The Australian Coeliac

– Restaurant card

– Recipes & food mail order pamphlets

The Coeliac Society of NSW Inc: 02 9487 5088

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COELIAC SOCIETIES

• Seminars

• Cooking demonstrations / lessons

• Educational material

• Dinners

• Picnics

• Support group activities

• Recipes

• Hints about travelling

• Current research information

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STRUCTURING YOUR PATIENT INTERVIEW

• Measure height and weight

1. Understand the risk factors and reasons for remaining

gluten-free for life

2. Understand why and where large and trace sources of

gluten can be found in foods and ingredients

3. Develop skills in reading and interpreting food labels.

KEY FOCI OF THE FIRST

APPOINTMENT IS 3 FOLD

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READING A FOOD LABEL

• Nutritional Claim

– “Gluten-free”: no detectable gluten, AND no

oats or malt

– Australian Registered trademarks for gluten-

free

Registered trademarks owned by the

Coeliac Society of Australia Inc.

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• This is the proposed Registered

trademark that will start to appear in

the USA in 2008. It will certify that the

product is glutenfree to 10ppm of

gluten. However a product will be able

to be called glutenfree at 20ppm.

Internationally recognized gluten-free

symbol.

If produced overseas and sold in Australia

it must contain no detectable gluten.

Overseas this symbol can contain Codex-

defined ingredients.

Certified

Glutenfree

GF

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READING A FOOD LABEL• As of December 20th 2004, the source of all ingredients that

have been derived from a gluten containing grain must be

declared.

• Starch (wheat)

• Thickener 1422 (wheat)

• Hydrolysed vegetable grain (wheat)

• Malt (barley)

• Soy sauce (wheat)

• NB. The source does not need to be declared if it is gluten-

free. ie from maize, rice etc

• Starch

• Statements can be used instead:

• “Some ingredients are derived from gluten containing grains”

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READING A FOOD LABEL

Gluten Free biscuits Nutrition Information

Ingredients: Rice flour, sugar, peanuts, margarine, soy flour, glucose syrup (wheat), baking soda, water.

Servings per package (10) Serving size 20 g

Per serving Per 100 g (20 g)

Energy Protein Fat

Carbohydrate total

sugars Gluten Sodium Potassium

430 kJ 3.2 g 6.0 g 9.6 g 5.7 g 0.0 g 63 mg 79 mg

2150 kJ 16 g 30 g 48.0 g 28.5 g nil 315 mg 395 mg

NB: teach clients this is OK

Ingredient List

– ingredients

listed from

largest to

smallest

Nutrient

Information

Panel (NIP)

– must

include

gluten

content

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PRACTICAL ISSUES

• Caution when eating at restaurants

• Diet history

– suggested meal and snack substitutions

• Supplements

– iron, calcium or multi-vitamin

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MEDICATIONS & SUPPLEMENTS

• Pharmaceutical companies have different labeling laws

– From July 2004 wheat starch can no longer be called gluten-free

– Active ingredients are declared

– Gluten derived excipients need to be declared

• CHECK ALL MEDICATIONS, VITAMIN & MINERAL SUPPLEMENTS AND OTHER ELIXERS PRESCRIBED.

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PATIENT FOLLOW-UP

• Balancing the diet

– are gluten-free grains in the diet

• Calcium

– intake assessment

– Dx in early teens: GFD allows peak bone mass to be reached

– dietary modification

– non-dairy suggestions if required

– supplements if required

– bone mineral density scan suggestion

One month follow-up

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PATIENT FOLLOW-UP

• Fibre

– GF grains/flours are lower in fibre

– suggest ways to increase dietary fibre

– Bulking agents: eg. Psyllium

• Iron

– Were they anaemic at diagnosis?

– Suggest ways to increase dietary iron

– Short-term supplement may be needed

• Folate

– Most GF food is not fortified

– Suggest ways to obtain dietary folate

– Supplements may be required

– Especially important for pregnancy

One month follow-up

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PATIENT FOLLOW-UP

• After the second biopsy

– ? Frequency & severity of symptoms

– ? Biopsy improvement

– ? Coping

• Does the GFD need to be more strict?

– Assess all foods, medications and drinks

– Alter diet if symptoms persist (no column 3)

• Result of BMD scan

• Screening of family members

• ? Need Psychologist or Social Worker

Six month follow-up

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PATIENT FOLLOW-UP

Required if the 6 month follow-up suggested a need: e.g still symptomatic, doctor concerned about abnormal biopsy or raised serum antibodies.

• Assess diet, drinks and medication

– Brands of food and medication

– Frequency of takeaway / restaurants

– Type of snacks

– Holy Communion wafers

– How they choose GF food items (label reading)

• Make dietary changes if gluten is found

• If no gluten is found

– Suggest possible elimination diet only if symptoms persist while GF

– Inform the doctor of status of GFD

1 year follow-up

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HOSPITALIZATION ISSUES

• Know what gluten-free food is available

• Interview the patient as soon as possible

– how sensitive are they

– they may be required to bring food

• Enteral Feeds (read all labels)

– mostly gluten-free

– check the new intensive care feeds

• Oral supplements

– e.g.. Ensure and Sustagen are gluten-free