Upon diagnosis of coeliac disease, there is an array of emotional reactions that are quite normal and experienced by many. For some, the diagnosis may come as a great relief as you were concerned that it was something more serious. Others may feel shock, despair, grief, disbelief or guilt and you may feel overwhelmed or uncertain. Please be aware that you are not alone and Coeliac Australia is there to support you. If you would like to talk to someone, please phone their Helpline on 1300 458 836.

Although coeliac disease cannot be cured, it can be controlled with a strict, life-long gluten free diet. When you first start the gluten free diet, you tend to focus on what you can’t eat, but as you learn more, you realise that there are so many foods that you can still enjoy.

Follow the steps below to get started on your gluten free journey.

First week

• Join Coeliac Australia. Membership will provide you with everything you need to get started on your gluten free diet. Their Membership Support team can also answer any initial questions you may have about coeliac disease.
• Start your gluten free diet immediately. Begin by purchasing products that are labelled ‘Gluten Free’, as well as foods that are naturally gluten free. Once you become a member and learn more about reading labels, you’ll be able to confidently choose foods that are gluten free by ingredient.
• Make an appointment with your GP to test for any vitamin or mineral deficiencies and associated conditions.
  • All adults diagnosed with coeliac disease should have a bone density scan to check for osteopaenia or osteoporosis. Those with medically diagnosed coeliac disease are entitled to a Medicare rebate for a bone density scan every two years.
  • Tests for associated conditions
    • Electrolytes e.g. sodium and potassium which measure kidney function.
    • Liver function tests.
    • Thyroid function – autoimmune thyroid disease (Graves disease or Hashimotos) can be associated with coeliac disease.
    • Fasting blood glucose to check for autoimmune diabetes (type 1 diabetes or Latent Autoimmune Diabetes (LADA))
    • Deficiencies in newly diagnosed and untreated coeliac disease can include iron, calcium, phosphate, vitamin D, zinc, vitamin B12, folate, magnesium. Supplementation may initially be required to correct any deficiencies.
• Make an appointment with an Accredited Practising Dietitian who specialises in coeliac disease. Contact the Dietitians Association of Australia to find a dietitian near you.

First month

• Family members should be screened for active coeliac disease using the coeliac antibody blood test, even if there are no obvious symptoms. This is because immediate family members of someone with coeliac disease have a 1 in 10 chance of also having the condition.
• Re-organise your kitchen and pantry. Ensure that your gluten free food is clearly marked and that other members of your household understand the importance of avoiding cross contamination. Members have access to fact sheets in the Members Area of this website to assist with this.
• Take advantage of the services and resources offered by Coeliac Australia. Contact the Membership Support team to find out what is available to you locally and online.
• Start using your Ingredient List Booklet (you will receive this when you become a member) to identify suitable products that are not marked ‘Gluten Free’ but are suitable by ingredient.

First year

• The coeliac serology blood test should be repeated at six and twelve months post diagnosis, and then annually after that. This test measures the blood antibodies which are usually elevated in those with untreated coeliac disease. They can initially remain elevated despite compliance with the gluten free diet, but should gradually return to normal. Once they return to normal, they can be used as an indicator of gluten exposure.
• Learn how to look for gluten free foods when eating out. Use the Coeliac Australia restaurant directory to find restaurants that offer gluten free.
• Try converting some of your old favourite recipes into gluten free versions. Members have access to fact sheets in the Members Area of the Coeliac Australia website to assist with this.

Ongoing

• The small bowel biopsy should be repeated in adults 18-24 months post diagnosis to confirm small bowel recovery.
• Annual medical review – we have a fact sheet on Monitoring and follow-up of coeliac disease for further information.
• Remain a member of Coeliac Australia to continue receiving the latest information on coeliac disease and the gluten free diet.