Living with coeliac disease

Just been diagnosed

Upon diagnosis of coeliac disease, there is an array of emotional reactions which 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 here to support you. If you would like to talk to someone, please phone your state coeliac organisation 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 your state coeliac organisation. Membership will provide you with everything you need to get started on your gluten free diet. Your state coeliac organisation 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. 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 offered by your state Coeliac organisation. Each state offers a variety of different workshops, supermarket tours and support groups to support you on your gluten free journey. Contact your state organisation to see what is offered in your state.
  • Start using your Ingredient List Booklet (you will receive this when you become a member) to identify gluten free products that are not marked ‘Gluten Free’ but are gluten free by ingredient.
 

First year

  • The coeliac serology blood test should be repeated at six and twelve months post diagnosis for the first year, and then annually after that. This test measures the blood antibodies which are usually elevated in those with untreated coeliac disease. They can 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 our 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 this website to assist with this.
 

Ongoing

  • The small bowel biopsy should be repeated 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 your state coeliac organisation to continue receiving the latest information on coeliac disease and the gluten free diet.
 
 

Useful Links

Read Information

 

Brochures
Coeliac disease
Associated conditions
Fact sheets
Monitoring and follow-up
Why is the gluten free diet not helping me?
Position statement
Point of Care Testing for coeliac disease

 

Helpline: 1300 458 836

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