Coeliac disease – symptoms, risk factors & diagnosis

Whilst awareness of coeliac disease and gluten-free diets in general has grown rapidly in recent years, awareness around specific symptoms and diagnosis methods relating to this lifelong autoimmune condition is still relatively low. Indeed, around 1 in 100 people have coeliac disease but only a quarter have actually been diagnosed.

With it being coeliac disease awareness week, we considered it to be a fitting time to look at this condition in more detail; including some of the most common symptoms and risk factors associated with the condition, as well the main steps towards getting a diagnosis and how the gluten-free diet is the key to becoming symptom-free.

What is coeliac disease?

Coeliac disease is an autoimmune condition where the immune system mistakes healthy cells for harmful ones and produces antibodies which result in the small intestine becoming inflamed and less able to absorb nutrients. It can cause a range of symptoms including diarrhoea, abdominal pain and bloating, as well as non-gut related symptoms.

The condition is caused by an adverse reaction to gluten, a dietary protein found in three types of cereal: wheat, barley and rye (oats may also be contaminated with gluten, unless labelled gluten-free).

The surface of the intestine is covered with millions of tiny projections known as villi which increase its surface area and help with more efficient food digestion. However, in coeliac disease, the damage caused to the lining of the small intestine flattens the villi which can result in malabsorption.

How common is coeliac disease?

Coeliac disease is a common condition that affects around 1 in 100 people. However, only around a quarter of the people who have the condition have been diagnosed meaning that around half a million people are currently suffering from the condition without knowing.

Dermatitis herpetiformis

Dermatitis herpetiformis, or ‘DH’ as it is often referred too, is the skin manifestation of coeliac disease which often occurs as a rash on the elbows, knees, shoulders and face. It affects around 1 in 3,300 people so is far less common than coeliac disease.

Symptoms of coeliac disease can include:

  • frequent bouts of diarrhoea or loose stools
  • nausea, feeling sick and vomiting
  • stomach pain and cramping
  • lots of gas and bloating
  • feeling tired all the time, ongoing fatigue
  • anaemia (you would be told if you’re anaemic following a blood test)
  • weight loss (although not in all cases)
  • regular mouth ulcers
  • constipation or hard stools

Risk factors for coeliac disease

Family History and Genetic Predisposition

Coeliac disease is more common in those with a family history of the condition. This means that if you have a blood relative with coeliac disease, you are at increased risk for developing it too. It occurs in up to 5-10% of family members of people diagnosed with coeliac disease.

Around 95% of people who have coeliac disease have the HLA-DQ2 gene and the majority of the remaining 5% have the HLA-DQ8 gene. Genetic testing can determine if you have one or both of these genes. It is, however, important to note that having this gene means that you are at risk for developing coeliac disease but it does not mean that you definitely have it or will develop it.

Having another autoimmune condition

If you already have an autoimmune condition such as thyroid disease or type 1 diabetes, then this leaves you at a greater risk for developing coeliac disease (and conversely a diagnosis of coeliac increases the risk of developing thyroid disease or type 1 diabetes).

Diagnosis

There are two main steps towards a coeliac disease diagnosis:

  • Your GP will take a blood test to check for specific types of antibodies. These are a significant marker for coeliac disease, however it is possible to have a negative test and still have coeliac disease.
  • If your blood test is positive or there is a clinical suspicion of coeliac disease, then your GP will refer you to a specialist for a gut biopsy to check for villus atrophy (ie wearing down of the villi lining the small intestine).

Please note that you should not remove gluten from your diet before or during either stage. Only when the biopsy is complete.

In the case of children, a biopsy may not be a necessary step in every case. New guidelines have been published by Coeliac UK and the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) recommending that children with symptoms of coeliac disease whose blood tests show a high level of antibodies and who have the genes for coeliac disease, may not need to have a biopsy to confirm the diagnosis.

For more information on getting a diagnosis, please follow this link to the Coeliac Society website.

Non-coeliac Gluten Sensitivity

There are also many people who do not have coeliac disease  but who still have a reaction to gluten – this is known as non-coeliac gluten sensitivity (NCGS), the prevalence of which is unknown. In this case, when gluten is consumed, it can cause irritation and inflammation of the digestive system, leading to unpleasant digestive symptoms such as bloating, diarrhoea, constipation, fullness and discomfort.

NCGS can also cause or contribute to non-gastrointestinal symptoms such as autoimmunity, allergic and atopic conditions such as hay fever, mental health disorders and other inflammatory conditions.

In addition, during the digestion of gluten, substances called gluteomorphins are produced. These are opioid like substances that can impart an opioid effect on the brain as they have both sedating and addictive properties. Therefore they can contribute to food addictions, making it difficult to remove gluten from the diet, post meal slumps and some studies have linked them with conditions such as brain fog, depression and autism.

Other wheat related conditions

Beyond coeliac disease there can be allergic reactions to other non-gluten proteins in wheat (ie wheat allergy). In addition, the carbohydrates (fructans) in wheat can be problematic for some people and contribute to IBS. This is why wheat is excluded from FODMAP diets (FODMAP = Fermentable, Oligo-, Di-, Mono-saccharides and Polyols).

Gluten free diets

‘Gluten free’ diets have become popular in recent years. In fact, the ‘free from’ market in general is growing so rapidly that it is expected to be worth £550 million by the year 2019. And the ‘gluten free’ market itself grew by 12.6% globally in the last year.

Last week The Daily Telegraph reported on research conducted by Harvard University on the potential negative impact of a gluten free diet if you DON’T have coeliac disease.

Researchers at Harvard looked at data from nearly 120,000 people over 26 years and found that going gluten free did not cut the risk of heart disease. In fact, they warned that restricting dietary gluten may result in a low intake of whole grains, which some research has shown as being beneficial for the heart.

Wholegrains do provide a significant source of fibre (along with other nutrients) – in the US-diet wheat based products make up 78% of dietary fibre, therefore, very often, when a person removes gluten from their diet they also remove most of the fibre. Many ‘gluten free’ products on the market are heavily processed and low in fibre. However, it is more than possible to get a good intake of wholegrains from non-gluten sources such as brown rice, quinoa, buckwheat and gluten-free oats.

It should also be remembered that vegetables and fruit provide excellent sources of dietary fibre. Many studies have shown a direct relationship with the number of fruits and vegetables consumed and overall health and mortality. They are not only a great source of fibre but also high in many vitamins, minerals, phytonutrients and anti-oxidants (you can optimise the intake of these by eating as many different colours of vegetables and fruits as possible).

Another gluten free source of fibre is pulses such as lentils, beans and chickpeas, these are high in many nutrients and are also a source of protein.

So should you cut out gluten?

If you have a family history of coeliac disease and gut symptoms or other health conditions that you suspect may be linked to gluten, then visit your GP to discuss whether a test for coeliac disease is appropriate. A positive test and subsequent diagnosis of coeliac disease requires lifelong avoidance of gluten.

Coeliac testing does not identify all cases of coeliac disease, in addition a negative test result does not rule out ‘non-coeliac gluten sensitivity’ – you might therefore like to carry out a ‘gluten-free elimination trial’ – this is where you remove all sources of gluten from your diet for at least a month and see how your symptoms are.

It is important to make a note of your symptoms at the start of the trial and perhaps rate them on a scale of 0 to 10 (ie where 0 is as bad as it could be and 10 is as good as it could be). Then at the end of the month, rate your symptoms again and compare the scores. If you feel your symptoms have improved significantly you have two choices:

  • reintroduce gluten and continue to monitor your symptoms – if you experience a flare-up this will suggest that you are reacting to it. Note that you may also get ‘new’ symptoms when you reintroduce gluten, so watch for these too;

or

  • continue to eliminate gluten on the basis that you have improved, in other words you may not feel you need to carry out a trial reintroduction.

Healing the gut

After diagnosis of coeliac disease or gluten sensitivity and removing gluten from the diet, the healing process time depending on the individual. Some people feel significantly better within a few days of starting a gluten-free diet however others may see more of a gradual improvement in their symptoms.

It is estimated that it can take between six months and up to five years (in some cases longer) for the gut damage caused by eating gluten to fully heal. Several factors are thought to be involved in the variable time taken for the gut to heal, including age and severity of gut damage at diagnosis.

When removing gluten from the diet you can help the healing and repair process by:

  • Following an anti-inflammatory diet, rich in fruits and vegetables and low in sugar with healthy fats and protein.
  • Getting 8-10 portions of vegetables and of 1-2 fruit to obtain good levels of fibre (increase vegetables gradually and lightly steamed or in soups may be best initially). Fibre will encourage a healthy balance of gut bacteria which have anti-inflammatory benefits on the gut lining.
  • Consider prebiotic and fermented foods such as chicory, artichoke, apples, kimchi and sauerkraut – again introduce them slowly.
  • Ensure good all-round intake of nutrients (ie vitamins and minerals) which are important for gut repair.

Finally, if going gluten-free, avoid eating highly processed ‘gluten free’ foods that lack essential nutrients and fibre. These may be okay in small amounts on an occasional basis but should not form the basis of breakfast, lunch and supper. Choose foods that are naturally gluten free – for example, sweet potatoes, butternut squash, beetroot, quinoa (rinse it thoroughly before cooking), buckwheat, brown rice and gluten-free oats (oats should be avoided in the first year after diagnosis).

With either of these conditions, a strict elimination is important – small amounts of contaminated food can trigger inflammation. So watch out for contamination from kitchen work surfaces, toasters, food jars (eg spreads may be contaminated if family members are putting knives that have been used on bread into the jar) etc.

Foods to avoid on a gluten free diet

Bread – wheat, rye, spelt, kamut Semolina
Wheat pasta Batter
Cous cous Rusk
Tabbouleh Wheat / rye / barley flour
Pearl barley Commercial gravies
Semolina Worcester sauce (gluten free available)
Beer / lager Soy sauce (Tamari soy is gluten free)
Breadcrumb coatings Baking powder (gluten free is available)

 In restaurants – check ingredients. Beware of soups, sauces and gravies (where flour might be used to thicken, even in tomato sauces). Chips may be coated with flour before frying to help crispiness. Avoid deep fried food as the oil will be contaminated with batter unless a separate fryer is used. Supermarket salads may have wheat in the ingredients list so it is important to take note of labels.

The Coeliac Society has a directory of foods that are certified ‘gluten-free’ and also operates a certification scheme for restaurants that meet certain criteria.


If you have any questions regarding the health topics that have been raised please don’t hesitate to get in touch with me (Clare) via phone; 01684 310099 or e-mail (clare@cytoplan.co.uk).

Clare Daley and the Cytoplan editorial team: Joseph Forsyth


Relevant Cytoplan Products

Gluten Free Secrets by Anette Harbech Olesen and Lone Bendtsen

CoQ10 Multi or Foundation Formula 1 (contains iron). All round multivitamins / minerals containing nutrients important for repair.

Vitamin A – important for immune function, cell growth and differentiation. May be useful to take for 2-4 months as part of a gut repair programme.

Acidophilus Plus – 9 strains of live native bacteria with activity throughout the whole GI tract. Most suited to people under the age of 40 and ideal for long term.

Fos-a-dophilus – Ideal for those over the age of 40, this live native bacteria supplement is high in Bifidobacteria which colonise the large intestine and are most often less easily replenished in those over the age of 40.

Cyto-biotic Active – This is a 9 strain product with activity throughout the whole GI tract. Ideal for all ages.

Aloe Vera Inner Leaf – The inner leaf fillet contains higher levels of salicylates, and a small amount of aloin.

Slippery Elm – A traditional remedy. Slippery Elm produces a thick mucilage that coats the intestinal membranes.

L-Glutamine – an amino acid used as fuel by the intestinal cells.

Phyte-Inflam – contains curcuminoids, gingerols and piperine.

Omega 3 fats in our High Potency Fish Oil, Krill Oil or Omega 3 Vegan– all contain good levels of EPA which support production of anti-inflammatory prostaglandins.


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2 thoughts on “Coeliac disease – symptoms, risk factors & diagnosis

  1. My daughter is Coeliac. My husband has major problems with gluten but has not been diagnosed Coeliac. I wonder if you have any idea how to help him. He had his gall bladder removed 12 years ago (now aged 47). Now, every time he tries to cut out gluten, his tummy bloating improves no end but he gets other horrendous problems after 2 weeks. He gets terrible pain in his shoulders, headaches and terrible fatigue where he feels like he cannot function or go to work. It seems the only way to stop that is to re-introduce the gluten. Then his tummy bloats again and other symptoms. He takes Natures Own Multivit. Any ideas?

    1. Hi Rachel,

      Thanks for your question on our blog. Your husband’s symptoms when he removes gluten could be a ‘withdrawal’ reaction. Wheat proteins may have addictive properties in some people – they have been called ‘gluteomorphins’ due to endorphin-like effects on the brain. The symptoms should pass within a few weeks.

      You may be interested in the books ‘Wheat Belly’ by Dr William Davis and ‘Grain Brain’ by Dr David Perlmutter which explains these effects. In his book William Davis suggests that around 30% of people who stop eating wheat/gluten experience withdrawal reactions – extreme fatigue, mental fog, irritability, difficulty functioning at work and depression in the first few days or weeks. The symptoms disappear if it is reintroduced. This kind of reaction suggests that as well as having an effect a person’s gut, gluten may be having wider effects including on the brain.

      So I would suggest that your husband chooses a quiet time at work and tries again. Eating an anti-inflammatory diet – healthy fasts, plenty of vegetables, low in sugar and other stimulants, and drinking plenty of fluids is recommended.

      We do offer a free health questionnaire service that he may be interested in. If he completes and returns a health questionnaire we will send some written diet and supplement recommendations.

      All the best,
      Clare

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