Helpline: 09 820 5157

Living with Coeliac Disease

Just been diagnosed?

Congratulations for getting tested. You have overcome the most difficult part and can now start the positive journey to feeling better by avoiding gluten. 

How people feel after being diagnosed with coeliac disease varies greatly between individuals. If you have suffered symptoms for years you may feel great relief that, at last, you can start to deal with the problem. Others may feel shock, despair, grief, disbelief or may feel overwhelmed or uncertain.

However you feel, please don't panic, Coeliac New Zealand is here to support you. If you would like to talk to someone, please phone our helpline on 09 820-5157.

Although coeliac disease cannot be cured, it can be controlled with a strict, life-long gluten free diet. Once gluten has been removed from your diet, the process of gut healing will begin immediately and you will probably feel better within a few weeks. However, it can take up to two years or more for the gut to recover completely and the absorption of nutrients to get back to normal.

Coeliac NZ understand that this can be a stressful life-changing event, however by taking it one step at a time and taking advantage of the support available, you should start to get the hang of things within a few months.

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

First week

  •  Allow your feelings to come out - it's expected- but try as best you can not to stress yourself out. You have come to the right place for information (our website). Try to avoid searching through 'Dr. Google' as there is too much information on the internet to take in straight away. Over time you will learn which information is relevant for you.
  •  Start your gluten free diet immediately. First check what food you have in your home then begin by purchasing products that are labelled ‘Gluten Free’, as well as foods that are naturally gluten free. Learn more in the Eating Gluten Free section of our website.     
  • Join Coeliac New Zealand. Membership will provide you with everything you need to get started on your gluten free diet. The new member pack includes our handbook, fact sheets, Reading Food Labels booklet, Ingredients List booklet, GF recipes, and access to your local support group.   
  • Make an appointment with a Registered Dietitian who specialises in coeliac disease. Find a dietitian near you on the Dietitian New Zealand website. 

  First month

  • Talk to your GP about the possibility of getting gluten free food on prescription. For more information on the PHARMAC part-subsidy see the member's section.
  • Check out whether you or your child are entitled to either a Disability Allowance, a Child Disability Allowance or both here.
  • Talk to your GP about being tested for any vitamin/mineral deficiencies and associated conditions.
    • Adults diagnosed with coeliac disease should discuss with their GP if they need a bone density scan to check for osteopaenia or osteoporosis.
    • Test for associated conditions.
    • 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.
            
  • 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. Information on how to avoid cross contamination can be found in your member’s handbook.
  • Members can talk to their local Support Group representitive, and join in local support group activities.
  • Start using the 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. Members can find places to eat out in the Members Area (coming soon).

Ongoing

  • The small bowel biopsy should be repeated 18-24 months post diagnosis to confirm small bowel recovery.
  • Those diagnosed with coeliac disease are eligible for a free Influenza Vaccination, on the basis that coeliac disease is an autoimmune condition. Ask your GP about how you can get your free flu vaccine.
  • Remain a member of Coeliac New Zealand to continue receiving the latest information on coeliac disease, and gluten free living.
  • Become a volunteer, now that you have lived with coeliac disease for a couple of years you may like to support other people who are newly diagnosed. You can see how you can support others on our Get Involved page.