Coping With Your Coeliac Disease Diagnosis – Part One: Your Initial Diagnosis

19 February 2024

Coping With Your Coeliac Disease Diagnosis – Part One: Your Initial Diagnosis

Whether your coeliac disease diagnosis is expected, because it runs in your family, or it comes as a complete shock, it is significant and life-changing news. However, receiving your diagnosis may also bring some relief and hail the start of a new life, free of the pain and discomfort you were feeling before starting your gluten free diet.

Getting a coeliac disease diagnosis can be an overwhelming and confusing time, but there is lots of help and support available to get you through it. Let’s take a look at some of the steps you’ll need to take when you are first diagnosed.

Your tests and results

If your GP suspects that you have coeliac disease, they will arrange for a blood test to look for the antibodies usually present with coeliac disease. If this test is positive, then they will refer you to a specialist gastroenterologist, who may arrange further blood tests or a biopsy of your gut to confirm the diagnosis.

It can help to make a list of questions to take to this appointment, so you don’t forget to ask about anything you want to know. You may also like to take a friend or relative with you, who can concentrate on what the specialist is saying and take some notes for you.

If your consultant has concerns about how the disease has affected you, they may organise further tests. These include blood tests to check your levels of iron and other key vitamins and minerals. They may also arrange a special X-ray, called a DEXA scan, to measure your bone density.

A range of emotions

A coeliac disease diagnosis can make you feel a wide range of different emotions, often all at the same time. You may be scared about what the diagnosis means for you and your family, and worried about how you will cope with the life changes you need to make. You may also feel relief at finally understanding the cause of your symptoms and knowing that there is an effective treatment available. You may also feel frustrated if you’ve been misdiagnosed in the past, resentful that this has happened to you, or simply in shock.

There is no right or wrong way to feel about your coeliac disease diagnosis. All emotional responses are valid. So don’t be afraid to talk to your consultant, your GP, and to friends and family about how you are feeling. Remember, you’re not alone.

Do your research

As well as taking advice from your GP and your consultant, you should do your own research. The better you understand your condition, the less worrying it will be, and the more empowered you will feel going forward. Make sure you use sources you can trust, such as the Glutafin website, the NHS or Coeliac UK.

Coeliac disease affects around one in a hundred people in the UK. If you’re open and honest about your coeliac disease diagnosis, you may be surprised to find a friend or neighbour who also has the condition and can offer moral and practical support.

Talk to a dietitian

The only treatment for coeliac disease is to follow a strict gluten free diet. Your GP or the gastroenterologist you see will arrange an appointment for you to see a dietitian, who will explain more about the condition and help you to make changes to your diet.

Your dietitian will show you how to adapt to a gluten free diet and still ensure that you get all the nutrition that your body needs. They can offer recipes, healthy eating hints and tips and much more. Once again, it may be useful to make a list of questions for this appointment and take someone along with you.

Coping with your initial coeliac disease diagnosis is not easy, but you will get through the initial shock and the sudden changes in your diet. Next month, we’ll look at living with your diagnosis, including where to find support, how to read food labels and how to cope with setbacks as you adapt to living with coeliac disease.

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