RESEARCH UPDATE REPORT

Wow, where did the year go?

For me, it was a year that was consumed with all of my PhD research – research into coeliac disease and other gastrointestinal conditions affected by diet.

My research involves a comprehensive investigation into coeliac disease and how it affects both the new and long-term diagnosed person in our modern-day Australia.

The study has involved recruiting 100 people with newly diagnosed coeliac disease. The first 60 I recruited were assessed over a twelve month, period, during which time I saw them for review appointments at 6 weeks, 3 months, 6 months and at their 12 month anniversary.  The remaining 40 newly diagnosed were seen initially and for one review.  Each of the sixty people I followed for twelve months were then matched to someone the same age and same sex who had been living with coeliac disease and following a strict gluten free diet for at least two years. This group of people were termed my “established” coeliacs.

Each person in the study underwent a number of physiological tests (eg. body composition scans giving information about muscle, bone and fat mass, breath tests, blood tests). They also provided me with nutritional information about the foods they ate, and also completed questionnaires about their feelings and the impact coeliac disease had on their quality of life.

All of the information obtained has given a fantastic insight as to the issues that are affecting people when they are first diagnosed with coeliac disease.  Eg. How sick is the average coeliac when diagnosed today? What nutritional issues are important? Is there a “typical” coeliac? Then, as the majority were followed for 12 months, I was able to learn what changes occurred in the first year “recovering” on the gluten free diet.  All the tests that were done initially were repeated at the anniversary date, so there was a great comparison of the “untreated” and “treated” coeliac.  But, to gather even more information, I am currently comparing the health status of the average “established” coeliac walking around in the community who has followed their diet strictly for at least 2 years, as they have had all of the same tests done. We can observe if there are any health issues relevant to the long-term coeliac compared to the newly diagnosed coeliac, and also compared with the non-coeliac population..

Now you know why there are piles and piles of files on my desk! There is so much information that can be learned from the study, it is going to be an exciting year ahead presenting it all. I will continue to write reports – the next report will include some further findings, but here are some to date:

  • It appears that there is no relationship between how badly the villi is damaged when first diagnosed, and how severely people suffer from symptoms.  People with very bad symptoms can have minimal villous damage, and people with no gastrointestinal symptoms at all can have very severe damage. All combinations are possible, with no obvious pattern.
  • It also appears that in many people, even despite sticking very strictly to their gluten free diet, do not have perfectly normal coeliac serology (the antibody tests for coeliac disease, eg. tissue transglutaminase, endomysial antibodies) or biopsies after twelve months on the diet.
  • It appears that low levels of zinc and vitamin D are also common nutritional deficiencies in people with both newly diagnosed and long term coeliac disease.
  • It appears that after twelve months on a gluten free diet, the overall nutritional and physiological status of people with coeliac disease is improved compared to pre-gluten free diet.

Many of you who read this newsletter have taken part in my research – and to you I send a big thanks.  Without your involvement, the exciting information I am beginning to unravel would not exist.  I hope you would agree that participating in research studies is rewarding, not only contributing to the scientific/medical understanding of different conditions, but it is also a personally satisfying experience too. 

I am grateful to the Australian and New Zealand Coeliac Research Fund for providing me with initial funding to get this research project underway.  The experiences this research has provided me have been wonderful.  I have been fortunate enough to be invited to present at medical conferences in Brussels, Belgium, in Southampton, UK, Auckland NZ and around Australia. It is great to see so many groups hungry for information about this fascinating condition.