coeliac disease and type 1 diabetes mellitus

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Coeliac Disease and Type 1 Diabetes Mellitus Questionnaire for Paediatric Healthcare Practitioners Background 1) Where do you work? Primary Care Secondary Care Tertiary Care 2) What is your role? General Practitioner Community Paediatrician Consultant Paediatrician Consultant Paediatric Gastroenterologist Consultant Paediatric Endocrinologist Other (please specify) 3) How many of the following patients are currently managed in your trust? a) Coeliac Disease 0-5 5-10 10-20 20+ b) Type 1 Diabetes Mellitus (T1DM) 0-20 20-50 50-100 100+ 4) What (if any) of the following guidelines do you currently adhere to in managing paediatric coeliac disease? Internal NICE 2009 BSPGHAN 2005 ESPGHAN 2012 Other (please specify) Screening (select all answers that apply) 5) Which of the following patients with T1DM should be tested for coeliac disease? T1DM without gastrointestinal symptoms T1DM + gastrointestinal symptoms T1DM + absent HLA-DQ2/DQ8 T1DM + known HLA-DQ2/DQ8 positivity Other (please specify) 6) When should you screen/test patients with T1DM for coeliac disease? At point of diagnosis of T1DM At regular intervals following diagnosis of T1DM On appearance of additional gastrointestinal symptoms On deterioration in diabetic control On parental request Other (please specify)

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Page 1: Coeliac Disease and Type 1 Diabetes Mellitus

Coeliac Disease and Type 1 Diabetes Mellitus Questionnaire for Paediatric Healthcare Practitioners

Background 1) Where do you work?

Primary Care Secondary Care Tertiary Care

2) What is your role?

General Practitioner Community Paediatrician Consultant Paediatrician

Consultant PaediatricGastroenterologist

Consultant Paediatric Endocrinologist

Other (please specify)

3) How many of the following patients are currently managed in your trust?

a) Coeliac Disease

0-5 5-10 10-20 20+

b) Type 1 Diabetes Mellitus (T1DM)

0-20 20-50 50-100 100+

4) What (if any) of the following guidelines do you currently adhere to in managingpaediatric coeliac disease?

Internal NICE 2009 BSPGHAN 2005 ESPGHAN 2012

Other (please specify)

Screening (select all answers that apply)

5) Which of the following patients with T1DM should be tested for coeliac disease?

T1DM without gastrointestinal symptoms T1DM + gastrointestinal symptoms T1DM + absent HLA-DQ2/DQ8T1DM + known HLA-DQ2/DQ8 positivityOther (please specify)

6) When should you screen/test patients with T1DM for coeliac disease?

At point of diagnosis of T1DM At regular intervals following diagnosis of T1DM On appearance of additional gastrointestinal symptoms On deterioration in diabetic control On parental request Other (please specify)

Page 2: Coeliac Disease and Type 1 Diabetes Mellitus

Diagnosis 7) Which of the following tests do you currently use? (select all answers that apply)

a) In patients with T1DM and gastrointestinal symptoms

First Line (screen)

HLA-DQ2/8 Anti-TG2 Anti-EMA Biopsy Other

Second Line (to confirm)

HLA-DQ2/8 Anti-TG2 Anti-EMA Biopsy Other

Third Line (if required)

HLA-DQ2/8 Anti-TG2 Anti-EMA Biopsy Other

b) In asymptomatic patients with T1DM

First Line (screen)

HLA-DQ2/8 Anti-TG2 Anti-EMA Biopsy Other

Second Line (to confirm)

HLA-DQ2/8 Anti-TG2 Anti-EMA Biopsy Other

Third Line (if required)

HLA-DQ2/8 Anti-TG2 Anti-EMA Biopsy Other

8) During upper endoscopy, how many biopsies do you currently take from each part of theduodenum? (if applicable)

Duodenal bulb (D1) Second/third portion of the duodenum (D2/3)

Follow-Up and Management 9) What action would you currently take in patients with the following test results?

Recommend gluten-free

diet

Follow up with regular

repeatanti-TG IgA

No further CD-specific

action

a) Patients with T1DM andgastrointestinal symptoms

Anti-TG2 IgA negative

Anti-TG2 IgA positive, severe symptoms

Anti-TG2 IgA >10 ULN, anti-EMA positive, HLA positive

Anti-TG2 IgA <10 ULN, biopsy negative

Anti-TG2 IgA <10 ULN, biopsy positive

ReferAdditional

CD-specifictesting

Page 3: Coeliac Disease and Type 1 Diabetes Mellitus

9) (cont.) What action would you currently take in patients with the following test results?

10) Do you currently recommend a gluten-free diet to all asymptomatic patientswith T1DM diagnosed with coeliac disease?

YES NO

11) If YES, how do you explain the need for a gluten-free diet to these patients? (pleaserank in terms of importance; 1 - most important, 6 - least important)

Better glycaemic control Decreased risk of osteoporosis Decreased risk of lymphoma Decreased risk of later gastrointestinal symptoms Increased growth Increased fertility Other (please specify)

12) In your opinion, what is lacking/needs changing in current guidelines onthe diagnosis and management of coeliac disease in the paediatricpopulation?

Thank you for taking the time to complete this questionnaire

b) Asymptomatic patients with T1DMHLA negative

HLA positive, anti-TG2 IgA negative

HLA positive, anti-TG2 IgA <3 ULN, anti-EMA negative

HLA positive, anti-TG2 IgA <10 ULN, anti-EMA negative

HLA, anti-TG2 IgA >10 ULN and anti-EMA positive,

biopsy negative

Recommend gluten-free

diet

Follow up with regular

repeatanti-TG IgA

AdditionalCD-specific

testing

No further CD-specific

action Refer

Page 4: Coeliac Disease and Type 1 Diabetes Mellitus

Rachel Atherton, Medical [email protected]

Dr Matthias Zilbauer, Clinical Lecturer in Paediatric [email protected]

Department of Paediatric GastroenterologyBox 267, Addenbrooke's HospitalHills RoadCambridgeCB2 0QQ

Phone: 01223 217553