Awareness of coeliac disease and the gluten-free diet is growing. There is however still a low level of awareness of the symptoms and the differing effect before diagnosis.
We believe people may also be potentially linking their symptoms to other conditions. They may even be treating them with less importance than they deserve. Creating a stronger link between their symptoms and coeliac disease will help people become more informed. They can then be empowered to have their symptoms investigated and seek a diagnosis.
If you have just been diagnosed…
Upon diagnosis of coeliac disease, there is an array of emotional reactions which are quite normal and may be experienced by many. The diagnosis may come as a great relief as you have been concerned that it was something more serious. Although Coeliac can be serious it also very manageable. You may feel shocked, despair, grief, disbelief or guilt and a little overwhelmed.
Please be aware that you are not alone and there are groups from where you can build a great support network.
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 making it quite challenging. As you learn more, you realise that there are so many foods that you can still enjoy.
Your First Week as a diagnosed Coeliac:
- 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 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. Those with a medically diagnosed coeliac disease are entitled to a Medicare rebate for a bone density scan every two years.
- 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.
Your First Gluten-Free Month:
Family members should be screened for active coeliac disease using the coeliac antibody blood test. 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. Other members of your household should understand the necessity of avoiding cross contamination.
Start using an Ingredient List Booklet to identify gluten-free products that are not marked ‘Gluten Free’ but are gluten free by ingredient.
Your First Gluten-Free Year:
The coeliac blood test should be repeated at six and twelve months after the diagnosis, and then annually after that. This test measures the blood antibodies which are usually elevated in those with an untreated coeliac disease. They may remain elevated despite compliance with the gluten-free diet, but should gradually return to normal. Once they do, they can be used as an indicator of gluten exposure.
Learn to look for gluten-free foods when eating out.
Try converting some of your old favourite recipes into gluten-free versions.
Ongoing Coeliac Management
The small bowel biopsy should be repeated 18-24 months post diagnosis to confirm small bowel recovery.
If you need any further information on managing your condition our Doctors are on hand to advise and guide you. Coeliac can be kept under control and the symptoms controlled – it just takes teamwork to do it!