Listening to Families Videos

Professor Andrew Day Paediatric Gastroenterologist explains why some people get coeliac disease while others don’t and why people with coeliac disease respond differently.

Professor Andrew Day Paediatric Gastroenterologist talks about the levels of gluten that can be in food labelled gluten free in NZ (3 parts per million) and notes that this level can vary in other countries.

Professor Andrew Day Paediatric Gastroenterologist explains the history of coeliac disease and talks about the endoscopic techniques used to diagnose coeliac disease.

Professor Andrew Day Paediatric Gastroenterologist explains that the only way to currently manage coeliac disease is to have a gluten free diet.

Professor Andrew Day Paediatric Gastroenterologist notes that 90% of children will have a full recovery after 12mths on a gluten free diet while only 40% of adults will achieve this outcome.

Professor Andrew Day Paediatric Gastroenterologist talks about the importance of reading labels on food and what to look for in the label.

Professor Andrew Day Paediatric Gastroenterologist talks about blood tests and explains the different options available for diagnosing coeliac disease including endoscopy and a no biopsy approach that has recently been developed.

Tom talks about his experience with coeliac disease and how this has impacted on his life. Katie talks about how she supported Tom when he was going out – birthday parties etc

Katie talks about the importance of telling people that she and Tom have coeliac disease and that for them gluten free is not a dietary choice.

Katie, Tom and Andrew share their key messages about coeliac disease

Katie and Andrew talk about the value that Coeliac NZ provides – support, education, resources, information and advocacy

Anna Richards (Dietitian) and Sophie Hall (Paediatric dietitian) note that the presentation can be very wide and varied and that is why it is often missed. They identify some of the common presentations.

Anna Richards (Dietitian) explains the genetic link. She notes that there is a 10% chance of developing Coeliac from a first degree relative.

Sam shares how she and her family manage gluten. Anna Richards (Dietitian) talks about the coloured dot strategy for managing within a family.

Sophie Hall (Paediatric dietitian) notes that approx 50% of newly diagnosed people will have symptom resolution at 6 mths. Sam explains that the journey took 12mths and shares her story.

Sam talks about the importance of being supported by friends and being prepared. She talks about engaging with restaurants. Sam also talks about the great work that Coeliac NZ is doing in raising awareness.

Sophie Hall (Paediatric dietitian) notes that you either coeliac or not. Sam notes that regardless of symptoms coeliac disease needs to be taken seriously

Sophie Hall (Paediatric dietitian) explains the steps to diagnosis starting with the General Practitioner. Anna Richards (Dietitian) talks about the two options – blood work and biopsy. She notes the importance of a formal diagnosis.

Anna Richards (Dietitian), Sam and Sophie Hall (Paediatric dietitian) talk about living in the real world not in a bubble. They discuss the importance of finding a balance.

Sam and Sophie Hall (Paediatric dietitian) note the importance of language – stating that you have coeliac disease rather than being gluten free.

Sophie Hall (Paediatric dietitian) talks about the resources available from Coeliac NZ. Anna Richards (Dietitian) notes the value of the Coeliac Facebook page.

Anna Richards (Dietitian) talks about the private and public pathways post diagnosis to get to see a dietitian. Sophie Hall (Paediatric dietitian) notes that Dietitians NZ website has information about dietitians.

Anna Richards (Dietitian) and Sophie Hall (Paediatric dietitian) note that children need to have been eating gluten for 8 weeks prior to testing for coeliac disease.

Anna Richards (Dietitian), Sam and Sophie Hall (Paediatric dietitian) share their key messages from the discussion.