Advice for adults

Employment

Coeliac disease has the potential to significantly disrupt our daily activities. You may have concerns about whether to disclose your condition to an employer or colleagues, or how to manage workload due to a flare up of symptoms. Although coeliac disease has the potential to disrupt your work life, your condition can be managed, and symptoms kept to a minimum –particularly as you develop a better understanding of gluten-free eating and potential unexpected sources of gluten and cross-contamination. Given the prevalence of coeliac disease in the general population, it goes without saying that there are countless people with coeliac disease leading meaningful, highly productive professional lives.

Communicating with your healthcare team

Coeliac disease is a complex condition in terms of the challenges experienced following a gluten-free diet and the variability in symptoms from one person to the next. Keeping a journal of your ongoing health, mental well-being, symptoms, favourite recipes/gluten-free products etc. can help organise and integrate your thoughts and experiences. Recording the foods you eat, particularly early on in your diagnosis, can also make it easier to draw relationships between feeling unwell and potential sources of gluten exposure. This can also help during dietetic consultation, as this can help your dietitian establish whether your diet is balanced or has potential for nutritional deficiencies.

You may also find it useful to use a journal or diary to make note of any lingering questions or concerns you might have for your doctor. Medical appointments can be short and heavy on information –it is easy to forget to ask. You may find it empowering to develop a thorough understanding of your condition and how it affects you. Medical conditions are often plagued with persistent myths and misconceptions and coeliac disease is no different. Discussing your concerns with your doctor can help dispel any myths or false assumptions that you might unknowingly have.

Some coeliac myths:

• A tiny bit of gluten will not hurt!
  • It takes only 50mg of gluten to cause villous atrophy –about 1/100^th of a slice of white bread!
• Everybody that has coeliac disease gets symptoms
  • The type and severity of symptoms varies considerably between people. You can be exposed to gluten and damage your small bowel without experiencing any symptoms.
• Not many people have coeliac disease
  • Coeliac disease is very common, but many people do not know they have it. As many as 1 in 70 people have the condition.

Being diagnosed with coeliac disease can be a confusing and distressing experience –you may now have a definitive answer to why you have been feeling unwell, but you now need to wrap your head around a whole new way of eating. It is important to remember that many people have felt the same way. Don’t hesitate or feel bad about raising any questions with your doctor, they understand that receiving a diagnosis can be a confronting, overwhelming process.

If you feel confused or overwhelmed, consider taking someone you trust with you to your appointment. They can help you absorb and reflect on the information you get from your doctor. If you don’t have someone to take along, consider note taking or asking your doctor to write down important information.

Research shows that coeliac disease can significantly impact mental health. This can manifest as stress, anxiety, low-mood, or mental exhaustion/tiredness. A certain degree of psychological distress can be expected when adjusting to a long-term medical diagnosis, but it is essential to acknowledge when feelings of mental distress are exceeding your ability to cope. Severe and prolonged psychological distress can spiral into a significant mental health issue if left unchecked. Similarly, psychological distress is associated with a poorer gluten-free diet adherence. Take regular note of how you are feeling and consider discussing your mental well-being with your doctor if needed. They can suggest treatments and make referrals to mental health professionals where appropriate.

Your medical records and healthcare rights

You have many rights as a patient of the Australian healthcare system. For further information on you can view the Australian Charter of Healthcare Rights at:

https://www2.health.vic.gov.au/about/participation-and-communication/australian-charter-healthcare-rights

The charter includes rights relating to access, safety, respect, communication, participation, and privacy:

• All patients have a right to healthcare
• All patients will have a right to receive safe and high-quality care
• All patients will have a right to be shown respect, dignity and consideration
• All patients will have a right to be informed about services, treatment, options and costs clearly and openly
• All patients will have a right to be included in decisions and choices about their care
• All patients will have a right to privacy and confidentiality of their personal information

If you wish to examine your health records or talk to someone about them, contact your healthcare team and they can arrange for this. For further information on accessing your records, visit the Office of the Australian Information Commissioner (OAIC):