1. Keogh Institute for Medical Research Coeliac disease – a silent cause of bone loss in midlife 1. Keogh Institute for Medical Research; 2. Department of Endocrinology and Diabetes Sir Charles Gairdner Hospital; 3. School of Medicine and Pharmacology University of Western Australia Bronwyn Stuckey 1,2,3, Joanna Wagner 1, Jocelyn Tan 1, Smilja Dragovic 1, Lee Ann Mahoney 1

2. Keogh Institute for Medical Research Coeliac disease Chronic intestinal disorder Cause by immune reaction to the gliadin fraction of gluten found in wheat, rye, barley Cases villous atrophy from duodenum to distal ileum

3. Keogh Institute for Medical Research Coeliac disease presentations In the past = typical  steatorrhoea  weight loss  Anaemia Now = atypical  dyspepsia  iron deficiency  infertility  osteoporosis

4. Keogh Institute for Medical Research Aims Assess the prevalence of bone density assessment in adults with coeliac disease Document the choices of bone preserving therapy used in patients with coeliac disease Assess the prevalence of side effects of bone preserving therapy in general in people with coeliac disease compared with controls

5. Keogh Institute for Medical Research Why did we do this study? Prompted by a case series of 4 patients with unmasking or deterioration of CD with oral alendronate Torrential diarrhoea 3-4 months after starting oral bisphosphonate Stuckey and Sallie Osteoporosis International 2015

6. Keogh Institute for Medical Research Methods Participants were recruited through the Coeliac Society of WA via their monthly newsletter Participants completed an on-line questionnaire (Survey Monkey) or given the option to complete a paper version Informed consent was given on- line or, in the case of paper questionnaire, by signed consent. The study was approved by the SCGH Human Research Ethics Committee

7. Keogh Institute for Medical Research Age of participants with coeliac disease

8. Keogh Institute for Medical Research Age at diagnosis of coeliac disease 60 years 90% diagnosed in adulthood 36% after the age of 50 years

9. Keogh Institute for Medical Research Symptoms recognised before diagnosis Percentage 42% of respondents reported no recognisable symptoms before the diagnosis

10. Keogh Institute for Medical Research Symptoms recognised after diagnosis Percentage

11. Keogh Institute for Medical Research Participants with coeliac disease - bone density and fractures Age <20 years 20-3030-4040-5050-60>60 Have you had a bone density performed? No BMD 254231 Have you had a fracture (minimal trauma)? Yes2222313

12. Keogh Institute for Medical Research 32% reported minimal trauma fracture

13. Keogh Institute for Medical Research Use and tolerability of bone preserving medications

14. Keogh Institute for Medical Research Use and tolerability of bone preserving medications

15. Keogh Institute for Medical Research Comparison of reported side effects – HRT v alendronate %

16. Keogh Institute for Medical Research Tolerability – coeliac disease v controls

17. Keogh Institute for Medical Research Tolerability – coeliac disease v controls

18. Keogh Institute for Medical Research Comments about coeliac disease and bone from participants 44% of participants believed that CD had an impact on management of bone health – Side effects from medication – Not absorbing calcium – Not absorbing nutrients – Low dairy diet – Too tired to exercise

19. Keogh Institute for Medical Research Comments about coeliac disease and bone from participants “Poor bone density led to diagnosis of celiac disease” “Since going on a gluten free diet my bone density has improved except in my arms. I don't have my thyroid glands and believe this affects the extremities of your body “ “It is difficult to balance diet “ “Undiagnosed coeliac disease for a number of years resulting in poor calcium absorption” “I believe my asymptomatic and therefore undiagnosed coeliac disease led to my osteopenia (at age 26)” “I keep hearing from the internet it is something I should be concerned about but my Dr has never mentioned it” “I was absolutely horrified to find I had quite bad osteoporosis at 51. I only had a bone scan because that was included in the info I got when I joined Coeliac WA the month before, and I asked my GP to organise it because I had fractured my wrist 6 months earlier”

20. Keogh Institute for Medical Research Conclusions Coeliac disease should be excluded as contributing to osteoporosis in the postmenopausal woman, regardless of the absence of gut symptoms Patients with coeliac disease should have screening bone density especially at menopause. Patients with coeliac disease may not tolerate oral medications, particularly calcium supplements and oral bisphosphonates.