Head to Instagram and you’ll find over 14 million #glutenfree posts and that’s no surprise when we realise that over 500,000 people in the UK alone are believed the suffer from coeliac disease without knowing it. Coeliac disease is an autoimmune condition which means it develops when your body decides that healthy cells are foreign and so it sends antibodies out to ‘protect’ your body.
When someone has coeliac disease their body triggers an immune response to gluten entering their systems. During this process, antibodies are released that damage the lining of their gut and can cause a number of unpleasant symptoms, some of which are not even tummy-related.
It’s a common disease with a prevalence of about one in 100 in the UK
The problem with coeliac disease, explains Norma McGough, director of Coeliac UK, is that it often goes undiagnosed or misdiagnosed. McGough explained ‘It’s a common disease with a prevalence of about one in 100 in the UK but we’ve only got one-quarter of those people currently medically diagnosed.’ This means that there are still around half a million people in the UK who have coeliac disease but don’t know it.
So what does having this condition mean? According to McGough, coeliac disease can be hugely detrimental if left untreated, allowing a number of problems to develop. ‘It can result in children missing school, adults missing work and having days off for various reasons… there are links with depression and I think in terms of your ongoing health, coeliac disease can have a big impact on an individual’s life.’
Symptoms are very often gut related… they can be symptoms like nausea, diarrhoea, stomach pains and even constipation
But it’s not all bad. Unlike other autoimmune diseases, there is a simple treatment for coeliac disease that works – sticking to a gluten-free diet. ‘Symptoms can be reversed by identifying what the problem is and treating it properly by cutting gluten entirely from the diet.’
Coeliac disease is a problem that affects the gut and so we often associate the condition with gastrointestinal symptoms. However, the range of symptoms that coeliac disease is thought to cause is hugely varied. Here are some of the signs and symptoms to look out for.
1. Gastrointestinal problems
‘Symptoms are very often gut-related,’ said McGough. ‘Nausea, diarrhoea, stomach pains and even constipation.’ While these are the symptoms that most people associate with the condition, they often go misdiagnosed as IBS. Research has shown that 11 percent of the population globally have IBS but this diagnosis can lead coeliacs to live life untreated and as such their symptoms will not disappear.
when your body isn’t getting the right nutrients this can result in chronic fatigue
McGough revealed that one in four of those diagnosed with coeliac disease had been previously wrongly diagnosed with IBS.
2. Mouth ulcers
While this is a symptom that might not spring to mind when we think of gut problems, mouth ulcers are a common symptom of coeliac disease. In fact, they’re a common symptom of autoimmune problems such as coeliac disease because they indicate a generally rundown system.
The dietician revealed that this is a symptom to be particularly aware of, especially if they’re serious. ‘I’m talking about mouth ulcers that have a particularly detrimental impact because the whole mouth is covered. They’re particularly large and sore and its an ongoing problem for coeliac undiagnosed, not just the odd mouth ulcer.’
‘One of the problems with the under-diagnosis of coeliac disease is many of the symptoms are what you might class as every day and can be associated with other things.’ Tiredness is one example of this. Extreme fatigue can be a result of the other symptoms such as when your body isn’t getting the right nutrients because of the reaction its having to gluten.
If you find that you have extreme tiredness, Coeliac UK would recommend that you contact your GP so that they can test your blood and whether gluten is causing these issues.
one in four of those with coeliac disease had been wrongly diagnosed with IBS
4. Skin rashes
Or more specifically dermatitis herpetiformis, often referred to as ‘DH’, a skin condition linked to coeliac disease. ‘It’s an auto immune condition and causes tiny little blisters to develop. They occur mostly on the elbows and knees but can be anywhere,’ says McGough. Both itchy and stinging at the same time DH responds to a gluten-free diet often by clearing up.
Diagnosis of DH is confirmed by a simple skin biopsy test and if you’re found positive you’ll be referred to a gut specialist.
5. Anaemia and vitamin B deficiencies
Coeliac disease damages the lining of your gut which can mean your body doesn’t properly absorb the vitamins and nutrients that it needs from the foods you eat. Anaemia can occur when your body doesn’t absorb the right amount of iron in particular, which can lead to anaemia. But while not everyone with anaemia will have coeliac disease, it can often be a key giveaway as can deficiencies in B vitamins. While you would have to have a blood test to know whether or not you’re anaemic, signs to look out for are tiredness, shortness of breath, paleness and a tingling along with a crawling feeling in the legs. McGough explained also that ‘nutritional deficiencies such as those in iron and vitamin B are due to gut damage which then results in malabsorption of nutrients from the food you eat.’
6. Poor coordination and balance
Neurological problems such as a condition called ataxia are another surprising symptom that your body simply can’t do gluten. According to the NHS, ataxia is a term for a group of disorders that affect coordination, balance and speech and can result in problems with balance and walking, vision and even speaking and swallowing. ‘It’s an interesting area because neurological problems associated with coeliac disease highlight the wide range of manifestations and symptoms that can be triggered by gluten,’ said McGough.
While of course not all neurological problems can be treated with a gluten-free diet, ‘there is some evidence and work ongoing at the moment which shows that some individuals with problems like ataxia can be treated with a gluten-free diet if the problem is caught early enough. This is known as gluten ataxia.’
in the case of repeated miscarriages and problems with infertility… it’s worth screening for coeliac disease
7. Weak bones and osteoporosis
Osteoporosis is a condition that weakens bones making them fragile and more likely to break. It’s a common condition that according to the NHS affects over three million people in the UK and more than 500,000 people in this country receive hospital treatment for fragility fractures.
While for many people osteoporosis is not related to coeliac disease it can be a long-term complication of the disease if it goes untreated, ‘and yet once established on the gluten free diet and sticking strictly to it, that can make a huge difference to bone health and bone density,’ McGough asserts.
According to coeliac UK depression is another symptom of coeliac disease that it could be important not to ignore. While experts are still uncertain about the exact relation of depression and the autoimmune disease McGough said ‘If you’re unwell physically but you can’t put your finger on exactly what’s wrong and you’ve been back and forth to the doctor and they haven’t either then there is a potential for you to be feeling depressed.’
But while there are many individual studies highlighting the risk of depression for coeliacs, McGough asserted that there is still a lot of work to be done, ‘there is still no clear picture about why this is.’
While we used to consider it a disease of childhood… today the peak diagnosis age is around 50
9. Multiple miscarriages
This is a symptom that might shock some people, and again McGough stated that we are still not fully sure of the reasons for this association. ‘It’s certainly something that there should be awareness of,’ said McGough, ‘in the case of repeated miscarriages and problems with infertility that have been checked out then certainly it’s worth screening for coeliac disease.’
While the evidence base is limited, McGough explained that ‘there are studies that indicate that in undiagnosed, untreated coeliac disease there is this link with infertility problems. Therefore it’s certainly prudent to do a blood test for coeliac disease.’
10. Sudden weight loss
You might wonder how sudden weight loss can occur from a life-long condition but McGough explained that much like some of the other symptoms this is related to the autoimmune nature of this condition. While the disease can be triggered in childhood, certain symptoms may not manifest until adulthood. ‘We used to think this was a disease of childhood and we didn’t realise that people were going through their lives with undiagnosed coeliac disease… today the peak diagnosis age is around 50.’
Autoimmune diseases can result in the loss of hair
‘It’s possible that if you have undiagnosed coeliac disease and feel particularly stressed or had some other unrelated illness it might weaken your immune system and then exacerbate the symptoms.’ This could result in more malabsorption of nutrients in your gut and result in unexpected weight loss. ‘
11. Hair loss
Autoimmune diseases can result in the loss of hair. ‘In undiagnosed coeliac, disease alopecia [the medical term for hair loss] might be something that occurs but it may just be patchy hair loss as opposed to significant loss.’
While it isn’t a symptom that is as typical as gut problems, mouth ulcers, anaemia and tiredness it is listed as something to be aware of on Coeliac UK’s website.
12. Tooth damage
Again this symptom is a little rarer than most and is typically identified in children. ‘Tooth damage from undiagnosed coeliac disease a particular sort of discolouration and grooving of the enamel ‘ And while you might not be able to easily notice it in yourself it is something that your dentist would be able to identify.
‘Coeliac UK has had links trying to raise awareness of coeliac disease to health care professionals in order to try to address this,’ said McGough.
What do I do if I think I have coeliac disease?
‘The most important piece of advice I can give you is not to change your diet and see if it makes a difference. You should go to your GP or doctor and have a test,’ warns McGough. If you stop eating gluten and then go and have a test the results can come back false.
‘The screening test is the first step on the journey to diagnosis and you have to be on the gluten-containing diet when you have that test because otherwise, it’s a complete waste of time.’ Then to confirm your diagnosis you will be referred for an endoscopy which will determine whether or not you have the disease.
‘The gluten damages the lining of the gut and starts to cause the symptoms of coeliac disease and when you have an endoscopy a tiny, tiny piece of the lining of the gut will be sampled and then that can be analysed and the appearance of that can confirm diagnosis of coeliac disease.’
The charity has also just launched their Gluten Freevolution campaign which aims to grow the options of gluten-free foods available for people with coeliac disease when they’re eating outside the home. Click here for more info. Check Healthista.com throughout Coeliac Awareness Week (May 8th-15th) for more useful stories to help you if you’re thinking about going gluten-free.