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Coeliac Disease Challenges and Choices Claire Oldale RD Advanced Practitioner Dietitian - Gastroenterology.

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Presentation on theme: "Coeliac Disease Challenges and Choices Claire Oldale RD Advanced Practitioner Dietitian - Gastroenterology."— Presentation transcript:

1 Coeliac Disease Challenges and Choices Claire Oldale RD Advanced Practitioner Dietitian - Gastroenterology

2 1% of UK population coeliac… but only 24% medically diagnosed… = 4,700 undiagnosed coeliacs in Gloucestershire?

3 Aims: National Guidance:
What are the current recommendations for recognition, diagnosis and management of coeliac disease? Coeliac Services at GHFT What are we currently providing? GF prescribing Refractory /Non-responsive CD (AdM)

4 Current Guidance 2015: NICE Guidance (NG20). Coeliac Disease; Recognition, Diagnosis and Management. 2014: BSG. Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology. 2012: ESPGHAN: guidelines for the diagnosis of coeliac disease. (paediatrics).

5 What are current recommendations?
Recognition Diagnosis Management / Monitoring

6 Recognition: Offer serological testing for those with:
Unexplained GI symptoms Faltering growth Prolonged fatigue Unexpected weight loss Severe/persistent mouth ulcers Unexplained/ recurrent iron, folate or Vitamin B12 deficiency Type 1 DM (at diagnosis) Autoimmune thyroid disease (at diagnosis) IBS symptoms in adults First degree relatives of those with coeliac disease.

7 Recognition: Consider serological testing in those with:
Metabolic bone disorder Unexplained ataxia/peripheral neuropathy Unexplained subfertility or recurrent miscarriage Persistently raised liver enzymes Dental enamel defects Downs syndrome Turners syndrome

8 Dermatitis Herpetiformis
Cutaneous manifestation of gluten-sensitive enteropathy Itchy, papules / blisters on extensor aspects knees, elbows, buttocks, shoulder blades, scalp Diagnosis: presence of IgA deposits in skin surrounding lesions. <10% have GI / malabsorption symptoms on presentation, but 70% have abnormal jejunal mucosa and 25% raised IEL’s. Symptoms improve on GF diet +/- Dapsone.

9 Diagnosis: Serological Testing
ON a gluten containing diet, request: Total IgA and IgA tissueTransGlutaminase (tTG) + IgA Endomysial Antibody (EMA) if tTG weakly +ve. If IgA deficient: IgG EMA /IgG tTG or IgG Deamidated Gliadin Peptide (DGP) HLA DQ2/DQ8 only recommended in specialist settings for children/those already avoiding gluten.

10 Diagnosis: Confirmation - referral
Positive Serology Adults: Refer to gastroenterology/ endoscopy - OGD plus duodenal biopsies for confirmation of diagnosis. Children: Refer to paediatric gastroenterologist for further investigation. Negative Serology: If high clinical suspicion (anaemia, diarrhoea, family history CD) still refer for OGD and biopsy. Low threshold for re-testing if remain symptomatic.

11 Negative serology: differential diagnoses
Immune disorders IgA deficiency, immunodeficiency syndromes Autoimmune disease enteropathy, Graves, Sjögren’s, SLE, Rh Arthritis, MS. Food hypersensitivity CMPI, soy, nuts, eggs, NCGS Infection H. Pylori, Giardiasis, post infective, TB, AIDS, Viral

12 Negative serology: differential diagnoses
Drugs chemotherapy, NSAID’s Neoplasia enteropathy associated lymphoma, Inflammatory Disease Crohn’s, collagenous colitis/ duodenitis, eosinophilic GI disease, radiation enteritis

13 Relationship between villous height and crypt depth
Relationship between villous height and crypt depth. CD, crypt depth; IEL, intraepithelial lymphocyte; LD, lymphocytic duodenosis; PVA, partial villous atrophy; TVA, total villous atrophy; VH villous height. The dots represent IELs. Ludvigsson JF, et al. Gut 2014;0:1–20.

14 Management: ‘patients with CD benefit from a GFD regardless of the degree of damage in the small intestine and minor degrees of histological change suggestive of CD should not be ignored’ Ludvigsson JF, et al. Gut 2014;0:1–20

15 Management Following Diagnosis:
Refer to a HCP with a specialist knowledge of coeliac disease for advice on GFD and importance of compliance, with practical support to aid this. Consider requirement for bone density assessment (DEXA) Once established on GFD annual review should be offered.

16 Monitoring Annual Review:
Weight / height Symptom review Consider need for assessment of dietary intake/adherence. Consider need for specialist dietetic advice. Consider serum monitoring: FBC, Haematinics, bone, LFT’s, U+E’s, sTSH + tTG /EMA Consider need for further DEXA (as per osteoporosis guidelines)

17 Coeliac Service at GHFT
Paediatrics – following confirmed diagnosis: seen in dietetic OP clinic for initial advice then annual review in joint coeliac clinic (Consultant / Dietitian) until growth complete then referred on to adult service. Adults – following confirmed diagnosis: Dietetic-led coeliac service. New and existing patients

18 Dietetic-Led Coeliac Service
New Patients: 2/3 appointments: Group education session (invited within 4 weeks of referral) Individual appointment(s) 6/12 months after group. Previously diagnosed patients: Assessment of dietary adequacy and compliance if symptoms return, supporting identification of non-responsive and refractory disease. Assessment and advice on co-existing intolerance e.g. lactose, codex wheat starch, milk, oats, FODMAP’s….

19 Group Education. Coeliac disease: definition, contributing factors, symptoms. Treatment – lifelong GF diet: Importance of compliance; impact of non-compliance. Practicalities of diet– suitable foods, labelling, hidden sources of gluten, cross contamination, eating out, GF prescription. Acknowledge psychological / social impact on patient and family – often significant lifestyle change.

20 Follow-up appt(s) Review understanding and assess motivation / compliance with GF diet Nutritional adequacy of diet – in conjunction with other co-existing conditions/intolerances Weight monitoring Answering questions and signposting to other sources of support. Request/review monitoring bloods.

21 Compliance: Sound understanding of condition and dietary requirements.
Ongoing support from healthcare professionals Membership of expert organisation - Coeliac UK Awareness and knowledge of family, friends, eating establishments Availability of GF foods - essential foods on prescription - wider choice in Free-From ranges

22 Compliance: GF alternatives.
Availability, palatability and cost: - Availability and choice may vary depending on home location and access to larger supermarkets. - GF alternative foods are often ‘free from’ other allergens - can affect palatability and nutritional composition. - Gluten free foods can be up to four times more expensive than their ‘normal’ equivalent

23 GF prescriptions. From November 2016 Glos CCG have withdrawn prescriptions for GF staple foods for all. In exceptional cases only (for vulnerable patients where no prescription would significantly impact on a patients ability to remain compliant with a GF diet) a limited quantity of bread or flour mix. For further information refer to G-care pages on coeliac disease.

24 What next? Find the 4700 undiagnosed patients…
Current diagnosis rates approx. 100/year (adult)

25 What next? Service Development - what should we provide?
Annual review? Prescribing Support? Direct Access? for discussion later….

26 What next? Refractory Coeliac disease….. Thank you...


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