My daughter had digestive problems for years. We all knew it and become very used to it. She complained of bloating and diarrhoea, on and off, especially after eating bread and it wasn’t until she had been at university for a few months that she felt she could no longer bear it.

The GP was very helpful and sent her for blood tests which showed her to be very deficient in vitamin B12 – often caused by frequent diarrhoea. She had monthly injections to correct this and a referral to a specialist to investigate the cause of the diarrhoea and bloating. During this time, we did a lot of research and learned all about Coeliac disease and gluten intolerance – the two most likely causes of her problems.

Coeliac disease MUST be taken seriously

We discovered that Coeliac disease is a big deal, but not many people (including us) are aware of that fact. It can be very serious if left untreated and most people aren’t diagnosed until they are in their 50’s when most of the damage had already been done, so early diagnosis is important.

‘Underdiagnosis is a big problem and research suggests around 500,000 people have not yet been diagnosed’. Coeliac UK

There are many similarities between gluten intolerance and Coeliac disease.

Firstly, the symptoms are very similar. Secondly, the severity of the symptoms does not necessarily correspond to the severity of the cause. It’s important to know that it is possible to have only mild, or even no symptoms with Coeliac disease. So, if your child has occasional diarrhoea which is not that bothersome then it is still important to get tested.

GLUTEN INTOLERANCE V COELIAC DISEASE

Common symptoms: 

  • Bloating
  • Diarrhoea
  • Failure to thrive (in younger children)

The difference between the two conditions is VERY important.

Intolerance

With an intolerance, the sufferer should avoid eating gluten (wheat, barley and rye), to reduce the symptoms, but if they eat small amounts of it the only consequence is that the symptoms will return.

Coeliac Disease – an auto-immune disease

With Coeliac disease, ANY gluten in the gut can cause very serious long-term problems. Sufferers must avoid eating even the tiniest amount of gluten for the rest of their lives. It is an auto-immune disease, not an intolerance or allergy. It can also be genetic, so if you have relatives with the illness, whether you have symptoms or not, it is worth getting tested. Equally, if it doesn’t seem to run in the family you should still get tested if you have symptoms.

Diagnosis

Unfortunately getting a diagnosis for Coeliac disease is not always straightforward. For an accurate result, it is vital that you have eaten gluten regularly in the weeks leading up to the test. Not surprisingly most sufferers will have avoided gluten for some time, due to the unpleasant symptoms, so they may get a false negative result. Equally many people avoid getting the test at all because they can’t face the ‘gluten challenge’ in the weeks beforehand. They prefer to go without a diagnosis, not realising the consequences.

But what most of us don’t realise is how important it is to get diagnosed to avoid problems later in life.

Luckily for us, my daughter’s tests showed her to have a gluten intolerance and not Coeliac disease. We have managed to control her symptoms with a very carefully monitored diet. This has meant a very steep learning curve for us all to recognise the phenomenal amount of foods that gluten is in. It is not just wheat, barley and rye. Even stocks and ketchups, gravy granules and soy sauce and lots of ready-made meals and puddings contain gluten.

But if you, or your child, are found to have Coeliac disease then it is SUCH a good thing that you have found out, no matter what age you are. Avoiding gluten removes the risks of the disease which is very reassuring. Also, there is a huge amount of amazing gluten-free food and recipes around. Having too much gluten in your diet is a big subject at the moment, and many people are looking for gluten-free alternatives even though they do not have a medical reason to do so.