Newly Diagnosed With Coeliac Disease? Your First Steps
However you found out, whether it was months of unexplained symptoms or an unexpected result from a routine blood test, a coeliac disease diagnosis tends to hit in a similar way for many people: all at once, and with a lot to take in.
You don't need to overhaul your entire life by dinner time tonight (even though it might feel that way!).
Here's what really matters in the first few weeks of starting a gluten free diet, in an order that won't send you running for the hills.
First, pause and give yourself a moment
Before we get into the practical stuff, it's worth mentioning it's completely normal to feel a combination of relief and overwhelm at the same time. Relief that there's finally an explanation for how you've been feeling and overwhelm at the idea of changing how you eat for the rest of your life.
Try to think of it as a journey, not a race. Give yourself the time and space to adjust, explore new gluten free foods and build new habits, and be patient with yourself while your body and mind adapt.
Check off the non-food factors with your GP
Before you strip the pantry, there are a few things worth chatting about with your doctor (if you haven't already):
- Whether you need any follow-up blood tests, such as iron, B12, folate and vitamin D, since these are commonly affected around the time of diagnosis
- Whether a bone density scan is recommended, as coeliac disease can affect bone health over time, particularly if it went undiagnosed for a while
- Ask about a Chronic Disease Management care plan, which can make ongoing dietitian visits more affordable through Medicare
None of this must necessarily happen today, but it’s worth having on your radar for the coming weeks.
Start with your kitchen, not the whole supermarket
A common instinct after diagnosis is to walk into the supermarket and try to replace everything at once. You don't need to. Most of what's already in your kitchen, like fresh meat, eggs, rice, fruit, vegetables and plain dairy, is naturally gluten free and won't need replacing at all.
The more useful first step is learning to read labels, since gluten can turn up in less obvious places like sauces, stocks and processed foods. That skill will take you further than any amount of shopping ever will, and it gets easier and faster with practice. The best way to put that into practice is a pantry audit: check the basics to see what needs swapping for a gluten free version, such as gravy, stock, custard powder, baking powder and sauces.
This doesn’t have to be a solo journey
There's a huge amount of information available online. Some of it is genuinely helpful, but some is inaccurate and leads to unnecessary fear and hypervigilance. Coeliac Australia is a fantastic place to start for general resources, but general information only goes so far, because your unique situation, symptoms, test results and lifestyle are specific to you.
This is where working with a dietitian experienced in coeliac disease can make the biggest difference early on. Rather than piecing together advice from a dozen different sources, you get support and recommendations built around your actual life, and a real-life human to ask the specific questions that come up along the way, the ones Google or an AI bot can't answer quite so accurately.
What the next few months may look like
Symptoms can start improving within weeks of starting a gluten free diet, though this varies significantly from person to person. Healing of the gut lining can take longer, in some cases up to a couple of years. Your doctor will likely want to repeat some blood tests around six to twelve months after your diagnosis to check how things are tracking.
In the meantime, remember it will get easier. Reading labels gradually becomes second nature, eating out feels less intimidating, and the mental load tends to ease significantly once the first few months are behind you.
Frequently Asked Questions
How soon after diagnosis should I start a gluten free diet?
As soon as your diagnosis is confirmed by your doctor. Starting a gluten free diet before testing is finalised can affect the accuracy of your results, so it's important to wait for medical confirmation first.
Do I need to see a dietitian after a coeliac diagnosis?
While not compulsory, it's well worth it. Seeing a dietitian experienced in coeliac disease will save you months of second-guessing and confusion. They know the real evidence on trace gluten and cross-contamination and can give you recommendations that fit your clinical situation, lifestyle and nutrient needs.
How long does it take to feel better after starting a gluten free diet?
Many people notice improvements in symptoms within a few weeks to months, though everyone's timeline is a little different. Full healing of the gut lining generally takes longer and is usually checked with follow-up testing.
What tests will I need after being diagnosed?
This varies, but commonly includes blood tests to check iron, B12, folate and vitamin D, and sometimes a bone density scan. Your GP or gastroenterologist can advise what's appropriate for you.
Rhiannon is an Accredited Practising Dietitian with experience in coeliac disease and gut health, and lived experience of coeliac disease and IBS herself. She offers telehealth consultations Australia-wide.
