Clued up on Coeliac Disease


This week is Coeliac Awareness Week 12th-18th May 2014

You may have heard of coeliac disease but are not quite sure what it is. Perhaps you know someone who has it or you think you may have it yourself. Here is my ‘all about guide‘ to help you get clued up on coeliac disease.

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Coeliac disease (pronounced see-lee-ac) is a condition where the body reacts to a protein in foods called gluten.  Gluten is found in wheat but in many other grains too which means that someone with coeliac disease cannot eat the following grains in any shape or form.

  • Wheat
  • Barley
  • Spelt
  • Semolina
  • Couscous
  • Bulgar (wheat) and
  • Rye
  • Some people also react to oats

Meat, fish, fruit and vegetables, rice, potatoes and lentils are all fine, as are many drinks, but we find gluten in many everyday foods like breads, pasta and cereals. Gluten is a common ingredient in many processed foods like cakes and biscuits, gravy,  suet, liquorice, soy sauce, stuffing mixes, scotch eggs, faggots and anything batter or crumbed so it is a matter of looking very carefully at the ingredients on food labels or menus to determine which foods are safe to eat.

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What can happen if a coeliac eats gluten?

Eating gluten can cause many unpleasant symptoms to occur (these will vary depending on the severity of the condition):

  • Bloating and wind
  • Diarrhoea and / or constipation
  • Abdominal pain
  • Nausea, vomiting
  • Tiredness
  • Headaches
  • Mouth ulcers and skin rashes
  • Sometimes sudden or unexpected weight loss
  • Hair loss
  • Anaemia

Left untreated coeliac disease may lead to infertility, osteoporosis and small bowel cancer so it is important to make people more aware of this condition, particularly as it was revealed this week that a large number of people are living with coeliac disease in the UK but are completely unaware they have it!

Now coeliac disease is not a typical food allergy nor a food intolerance. I wrote a blog about Food Allergies (which explains what these are) last month. Coeliac disease however is what is known as an autoimmune condition. This is when the immune system goes a bit AWOL and starts to attack the wrong cells.  Normally the immune system is very good at knowing which cells belong to us; cells which we need to protect and these should be easily distinguished from foreign cells that could potentially cause us harm.

Usually these foreign cells will be bacteria or viruses, or even something non-living like a splinter of wood. Our immune system would sense their presence then attack to kill / remove them from the body before too much damage occurs.  The body’s defense against infection is normally very effective and its action is what helps us fight disease and illness but sometimes the immune system goes OTT and mistakes harmless cells to be a threat and so attacks them. This is the case in coeliac disease, where the immune system attacks the gluten in foods,or more specifically a component of gluten called gliadin.  This would otherwise be seen as harmless in people without coeliac disease. In reacting to the gliadin, the cells of the intestine are also attacked and destroyed and this affects the ability of the gut to absorb nutrients from food.

To put this into context, if we unraveled and stretched out a our small bowel and laid it flat on the floor, although ‘just’ 7m long , it would cover an entire tennis court! This is because the lining of the small intestine is made up of tiny finger-shaped projections that look like a brush, called villi. If you have coeliac disease and eat foods that contain a gluten, your villi become red, inflamed and swollen which flattens out the villi.  This massively reduces the absorptive surface and we physically can’t obtain all the nutrients we need from food.  The symptoms listed above are a reflection of the gut being so irritated by the gluten and the lack of energy and nutrients as a result of that. There is no cure for coeliac disease other than to avoid consuming all foods and drinks that contain gluten.

How many people are affected?

It is not known exactly why people develop coeliac disease but we do know that it often runs in families, i.e. there is a genetic link.

UK statistics have reported around 1 in 100 people have coeliac disease and if you have a close relative with the condition, such as a parent or sibling, your chance of developing it is higher – 10% or around 10 in 100 people. If you have an identical twin with coeliac disease, there is an 85% chance you will also develop the condition.

It may also be that your diet as a baby can make you more likely to get coeliac disease. If parents introduce gluten into their baby’s diet before they are three months old, it can increase their risk of developing coeliac disease. This is one of the reasons why the UK Government now recommends that parents wait until their baby is 6 months old (rather than 4) to introduce solid foods to their baby. 

It also affects all ethnic groups and is common in Europe and North America, as well as in southern Asia, the Middle East, North Africa and South America.

Another reason I decided to write this post is that coeliac disease runs in my family.  I have been tested twice over a period of about 15 years and both times the test came back negative.  More than likely I just have a mild wheat intolerance which, without going into too much detail and combined with IBS does give me some gut problems.  I avoided all wheat products (but continued to eat gluten in other foods) under the guidance of a dietitian and gut specialist (gastroenterologist) for a period of about 8yrs and I have to say my symptoms are improved. I can now eat wheat in moderation without too much of  a problem and if I am really honest I am much happier in my life so I think the stress that I was experiencing all those years ago was a big factor for me.

How can I find out if I have coeliac disease?

There are no over-the-counter tests for coeliac disease. You can’t go to a pharmacist or health food shop and get a diagnosis.  If you are worried about your body reacting to gluten you would need to see your GP in the first instance. They would arrange a simple blood test to check for specific antibodies – a sign that your immune system is reacting abnormally.

A blood test is not definitive however, sometimes you can have a negative test and yet still have coeliac disease, particularly if it is a mild case. Between 2-3% of people with coeliac disease can have a false negative test. The advice by Coeliac UK is not to remove gluten from your diet whilst you are being tested. Some people may start to reduce or cut out gluten from their diet because they feel ill. Unfortunately this is very likely to cause an inaccurate result so as a general guideline, the recommendation is to eat some gluten in more than one meal every day for at least six weeks before testing.

If your blood test comes back positive your GP will then refer you to a gastroenterologist – for a biopsy. By taking a small sample of tissue from the small bowel they can look at the cells of the gut to see if they show the characteristic signs of being flattened out and inflamed. 

Gluten free diets

Coeliac UK have piles of information for coeliacs to help them follow a gluten-free diet:  Coeliac UK – Gluten free diet and lifestyle

They also provide a list of Gluten free foods available on prescription – if you are diagnosed with coeliac disease by a doctor, you can receive gluten-free staple foods via prescription.

I must add here that I hear of many people following  a gluten-free diet because they think it will help them lose weight. There is absolutely no evidence to support this and I think it stems from our phobia of bread and carbohydrates. If bread makes you feel bloated it does not mean you have coeliac disease and eating gluten-free products, apart from being hugely expensive, are no lower in Calories or fat than gluten containing foods.  

What is coeliac awareness week about?

This week, Coeliac UK, the national charity for coeliac disease announced that new research has found a fourfold increase in the rate of diagnosed cases of coeliac disease in the United Kingdom. So basically we have been underestimating the number of people affected by coeliac disease. Now if we are diagnosing more people these days, this is good new – it shows people are becoming more aware of the disease and confirms diagnostic testing is getting better. But we must not forget that 3/4 of people with coeliac disease still remain undiagnosed.  This means ~500,000 people unknowingly live with this condition.

So even more important than ever, Coeliac UK’s annual Awareness campaign this year is entitled the ‘Gluten-free Guarantee’ and aims to improve availability of gluten-free foods in stores across the UK. It is asking  supermarkets to commit to have in stock 8 core items of gluten-free food, making it easier for people with the condition to manage their gluten-free diet, which is their only treatment.

Coeliac UK commented “Can you imagine going into your local supermarket and there is no bread you can eat, not one loaf not one slice? And when you check out the pasta, cereal or flour again there is nothing available on the shelf which means you have to trawl around two or three stores in order to be able to find your staple foods. This is not about your preferred brand but about the major supermarkets ensuring that they have sufficient stock in all their stores whatever their size for this growing market of people who depend on gluten-free food for their health.”

So I hope you find this interesting and helpful. If you’d like to know more please go to Coeliac UK’s website, its fantastic.

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