Coping with Your Coeliac Disease Diagnosis – Part Two: Living with Coeliac Disease

4 March 2024

Coping with Your Coeliac Disease Diagnosis – Part Two: Living with Coeliac Disease

Last month, we talked about how to cope with your initial coeliac disease diagnosis, including your tests and results, your emotions and starting your new gluten-free diet. In this article, we’ll take a look at what it’s like to live with a coeliac disease diagnosis, what changes you need to make in your life, what support is available and how quickly you can expect to feel better when you switch to a gluten-free diet.

Starting a gluten free diet

Coeliac disease is an auto-immune response to gluten, and the only effective treatment is to follow a strict gluten-free diet. Your GP should refer you to a qualified dietitian who will help you make the transition. You should also take steps to educate yourself and your family about which foods contain gluten, what alternatives you can use to remove gluten from your diet, and how to safely store and prepare gluten-free food when you share a kitchen with other people.

Here at Glutafin, we have lots more information to help you when you’re starting your gluten free diet, including which foods to eliminate, how to check food labels and how to avoid cross contamination. You’ll find lots of tasty gluten-free recipes too, to make your gluten-free diet varied, tasty and nutritious. Don’t forget to check out the website of the patient charity, Coeliac UK which also has lots of useful information

Getting support

Of course, coping with your coeliac disease diagnosis is about more than just changing your diet. Receiving a diagnosis of a chronic disease, which you will have to live with for the rest of your life, can be overwhelming. It’s important to find the right support to help you through what can be a very confusing and emotional time.

As part of the Glutafin community, we’re here to support you every step of the way. As well as finding lots of information on our website, you can join us on social media on Facebook, or on Instagram, or get in touch with our team anytime, with any questions you have. Our experts are always happy to help, and there’s no such thing as a stupid question. There’s also lots of Facebook groups for coeliacs.

For in-person support, Coeliac UK has over 30 local support groups across the UK. These are run by people just like you who have also had a coeliac disease diagnosis, and they provide both practical and emotional support. Every group is different, but most will run events like cookery demonstrations, social meet-ups and fundraisers. They’re also a great resource for local knowledge, such as the best places to eat out gluten-free.

More importantly, these groups give you the chance to talk to people who have lived with their coeliac disease diagnosis for some time. These experienced coeliacs can offer really useful advice and guidance as you come to terms with your new lifestyle.

Thinking positively

Inevitably, you’ll feel like your new gluten-free diet is restrictive at first, as you have to eliminate many of the foods that you’ve previously enjoyed. However, as you discover new ingredients and try new recipes, it will become easier and more enjoyable to live life gluten-free.

It may help to think of your new gluten-free diet as a healing process, designed to improve your health and quality of life, rather than seeing it as a restriction designed to make your life miserable. Making such a radical change to your diet can be hard, but the good news is that in many cases, you’ll start to feel better within a couple of weeks of starting your gluten-free diet. Some people even notice an improvement in digestive symptoms in just a few days, with symptoms like brain fog and fatigue easing soon after.

It can take as long as two years for your gut to fully recover, and inevitably you will make a few mistakes along the way that will set you back a little. You’ll need to learn to recognise the symptoms you get when you have accidentally ingested gluten, so that you can learn from your mistakes. These symptoms may be different from the symptoms you had before your diagnosis.

The important thing to remember is that you’re not alone. Hundreds of thousands of people in the UK have also had a coeliac disease diagnosis, so there’s all kinds of support out there for you. From the ever-growing gluten-free range at your local supermarket, to tasty gluten-free products on prescription from Glutafin; along with friendly local support groups, living with coeliac disease is easier than you might think.

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