Getting Diagnosed and Living with Coeliac Disease.

What is Coeliac disease?

Coeliac disease is an autoimmune disease, not an allergy or food intolerance, that damages the lining of the small intestine and affects the bodies immune system. This autoimmune reaction is triggered by gluten, which is a protein found in wheat (including spelt), rye, barley and oats (although not all coeliacs are affected by oats). In the bowel there are small finger-like projections called 'villi', which help us to absorb all the goodness and nutrients from food that our body needs. In a coeliac these villi become completely smooth and flattened by gluten, which is what causes the coeliac to become very ill.  The treatment for coeliac disease is a strict gluten free diet for life. Gluten is found in everyday foods such as breads, pastas, flours, cereals, cakes, biscuits, sausages (check labels), gravy, stock cubes, soy sauce, beer etc.

Symptoms can include: bloating, abdominal pain, nausea, constipation, diarrhoea, wind, tiredness, anaemia, headaches, mouth ulcers, recurrent miscarriages, weight loss (but not in all cases), skin problems, depression, joint or bone pain and nerve problems (CoeliacUK)  

Click here for a full list of symptoms

Family History:  Coeliac disease often runs in families, but does not run in predictable patterns. If you have a close relative with the condition, such as a parent or sibling, your chance of developing it is higher. This risk is approximately 10% for those with a family history, compared with 1% for someone without a close relative with the condition. If you have an identical twin with coeliac disease, there is an 85% chance you will also develop the condition. Click here for a list of coeliac disease symptoms for children.

Getting the Diagnosis - Blood Tests and Endoscopy

If you suspect you might have coeliac disease then speak to your doctor immediately - it took me years before I found a doctor who would listen to me and who knew about the disease. If your doctor suspects that you might have coeliac disease it is vitally important to keep gluten in your diet in the run up to any blood tests (they usually perform a tissue transglutaminase blood test or 'tTG' test to look for Anti-transglutaminase antibodies) or indeed before the endoscopy itself - this is to avoid any false-negative results and to make sure a proper diagnosis is possible - some doctors recommend eating gluten for up to 6 weeks before any tests take place. Yes, you will feel uncomfortable and whilst it is tempting to cut out the gluten once your blood tests come back positive or 'elevated', you must keep eating gluten to make sure you will get absolute confirmation or diagnosis of coeliac disease from the results of your endoscopy. So power through and don't stop eating gluten until a medical professional tells you to stop - usually the gastroenterologist or dietician... 

After Diagnosis 

 

When you've (finally) been diagnosed you'll probably have a lot questions about the gluten free diet, what you can and can't eat and about coeliac disease itself. It's well worth doing your research and being prepared with some questions when you first see the dietician. It can be a life-changing experience going gluten free, I was diagnosed in December 2009 - I felt alive for the first time in years, my health improved dramatically, I wasn't so tired anymore, I lost just under 2 stone in the run-up to being diagnosed and I finally knew what it felt like to be 'normal' and not suffer terrible stomach pains (amongst other things!) everyday, which is something coeliacs unfortunately get used to, when undiagnosed. It is very important to seek advice and support about going gluten free and the gluten free diet from your dietician and doctor. It is quite common to feel disconnected and sometimes bewildered about where to start and what's normal. Your body will go through quite a transformation after going gluten free and this can be quite disconcerting if you're not sure what to expect. However, for UK patients there are several valuable resources you can use:

• Coeliac UK
• Coeliac UK Facebook Page
• Juvela
• Glutafin
• Food Allergy and Intolerance Blog
• A Gluten Free Cooking Blog
• The Gluten Free Blogger
  

Facts and Figures (Statistics taken from a survey of over 1600 Coeliac UK Members, May 2009 – May 2010)

• The average diagnosis time for coeliac disease in the UK is 13 years!
• It is thought that 1 in 100 people in the UK have coeliac disease, but a lot of people are not actually diagnosed. 
• Under-diagnosis is a big problem. Research suggests around 500,000 people have not yet been diagnosed.
• 60% of people with coeliac disease have been previously misdiagnosed with IBS.
• According to a CoeliacUK survey: 23% of patients with coeliac disease had visited doctors for 11 years or more and a further 11% of patients having symptoms, visited their doctor for over 20 years before finally being diagnosed. Nearly a third (32%) of respondents said that they thought GP knowledge about coeliac disease was poor or very poor.

Gluten Free Food on Prescription

The next thing you'll notice after discovering what you can and can't eat, is the potential expense of living and eating gluten free. But thankfully supermarkets are beginning to recognise coeliac disease and are creating clearer labels and gluten-free sections. Here are a few manufacturers and resources to help you get started:

• Juvela - Gluten Free food manufacturer and prescription supplier
• Glutafin - Gluten Free food manufacturer and prescription supplier
• Livwell - Gluten Free food manufacturer and prescription supplier
• Gluten-Free Food and Drink Directory 2014
• List of Prescribable Gluten-Free Products Available
• Find out how many units you are entitled to per month
• Pre-Payment Certificate (To save on prescription costs)

But don't despair, you can eat relatively cheaply on a gluten-free diet if you know what to look for - your dietician will help you out with recipes and tips and tricks too. To help with the costs of living gluten free, you are entitled to gluten free food on prescription. Please note, this is only available for people who are medically diagnosed with coeliac disease and dermatitis herpetiformis. Click on the Pre-Payment Certificate link above for more information and to sign up. It costs about £10 per month and you can set up a repeat prescription with your doctor and local pharmacy.

Awareness of Coeliac Disease

Thankfully diagnosis of coeliac disease is on the increase, however many coeliacs (including myself) have been told they have IBS without a thorough examination or further investigation into the symptoms. One of my main concerns, with regards to a lack of awareness of coeliac disease, is some doctors willingness to attribute all adominal symptoms and complaints to IBS and not further investigating why a patient has an irritable bowel. There are numerous reasons why a patient might suffer with abdominal complaints (and other symptoms), but I believe it is vitally important that doctors listen to their patients more and look beyond the 'IBS' label. When I think about how long I've had symptoms of coeliac disease, I can trace some of them back almost 10 years before diagnosis! It was only by chance that I saw a different doctor that progress was made and I had a blood test followed by an endoscopy some weeks later, which subsequently confirmed coeliac disease. My main piece of advise is to persevere - you will find a doctor that will listen to you one day.