Non-Coeliac Gluten Sensitivity - what it is, what it isn’t and what you need to know about this emerging condition
Cakes, fresh bread, biscuits, pasta, pizza – lets face it, most of us wouldn’t voluntarily give all of these up indefinitely would we? But for some people, these foods, at least in their traditional form, are permanently off the menu. I am of course referring to those with Coeliac Disease, an autoimmune condition where eating gluten, a protein found in wheat, barley and rye, causes the body to attack its own tissues and leads to serious damage of the small intestine. Left untreated this damage can lead to more serious complications such as malabsorption of important nutrients, the brittle bone disease osteoporosis, lactose intolerance, fertility problems, and increases the risk of developing some forms of cancer. The good news however, is that we know how to test for the condition and that by avoiding gluten-containing foods, those with coeliac disease can be practically spared from the complications associated with it. For many a diagnosis is usually welcome as it typically follows months or even years of unpleasant symptoms including diarrhoea, constipation, bloating, nausea, vomiting, constant mouth ulcers, tiredness and unsurprisingly, depression.
There are however, a growing number of individuals who experience all of the above symptoms and are utterly convinced they have coeliac disease only to find that when tested for the condition their results come back negative. Some people are told they simply don’t meet the ‘gold standard’ for coeliac diagnosis which can, I grant, sound a little patronising and almost as though you didn’t quite win first prize. This gold standard does in fact relate to two types of testing, the first is a blood test that looks for specific antibodies which is then confirmed by the second, a biopsy of the gut where a sample is viewed under a microscope to look for damage caused by the gluten. Even if initial blood tests give a negative result but the gut is subsequently found to be damaged, a diagnosis of coeliac disease may still be given.
So what exactly is going on with these particular people, is it another condition, are they allergic to wheat, maybe intolerant to other foods instead, Irritable Bowl Syndrome, or maybe it’s “all in their head”? While the causes of the unpleasant symptoms seen in these people are many and varied doctors have begun to realise there is in fact one common denominator – gluten. These people are not suffering from coeliac disease but may be suffering from an emerging condition doctors are calling Non-Coeliac Gluten Sensitivity (NCGS).
Below we’ll take a look at what we do, and do not, know about this emerging condition. It’s very important to note however that we’re only just starting to understand NCGS and there is currently no agreed way to test people for the condition. Even the name of the condition itself may be subject to change.
The take-home message of this article really should be that, if you find yourself at a loss, knowing gluten really does seem to make you ill yet doctors confirm you don’t have coeliac disease, you are not forgotten and that there are plenty of doctors who are ‘fighting your corner’ and taking you seriously and hopefully the information in this article will offer some hope to such people.
Non-Coeliac Gluten Sensitivity (NCGS)
What is it?
There is, as yet, no definitive definition of non-coeliac gluten sensitivity as research into the condition is very much in its infancy. NCGS appears to be a condition linked to gluten that causes the same gastrointestinal pain, discomfort and associated symptoms seen in coeliac disease but where the lining of the small intestine is not damaged. Like coeliac disease, symptoms of NCGS are alleviated by removing gluten from the diet.
What are the symptoms?
The symptoms of NCGS are very similar to those seen in Irritable Bowel Syndrome (IBS) and almost identical to those seen in coeliac disease which, as you can imagine, makes diagnosing the condition incredibly difficult.
- Abdominal pain
- Diarrhoea and/or constipation
- Nausea and vomiting
- Weight loss
- Mouth ulcers
How is it different from coeliac disease?
To date, diagnosis of coeliac disease has always been confirmed via taking a small sample of your intestines and looking for the damage caused by gluten under a microscope. However, people suspected of having NCGS usually have the symptoms of coeliac disease but do not have a damaged gut. Since those with NCGS do not have the damaged gut seen in coeliac disease, which can lead to other complications such as osteoporosis and fertility problems, it’s hoped they will not develop these associated complications but more research is needed. Those with NCGS will return a negative result if tested for coeliac disease via a blood test.
How is it different from IBS?
It might be tempting to assume that if you have IBS you were misdiagnosed and do in fact have NCGS but research has shown this may be true for only a certain number of IBS sufferers. One study for example found that only a third of people diagnosed with IBS actually had NCGS (still arguably a significant proportion of course). What sets NCGS apart from IBS is that symptoms disappear almost entirely when gluten is removed from the diet. The same study also found that those with NCGS tend to lose more weight and suffer from iron-deficiency anaemia than those with IBS and are more likely to have suffered from food allergies as a child.
How is it diagnosed?
There is no set diagnosis method for NCGS to date but for the purposes of research a process of elimination approach has been adopted in order to learn more about the condition. This requires that coeliac disease be ruled out first via blood tests and gut biopsy. Wheat allergy, where specific immune reactions occur in response to wheat, is then ruled out via blood tests and skin-prick allergy testing and finally a 6-12 month gluten challenge must then be carried out. A gluten-challenge is where gluten is eaten, symptoms are recorded and then gluten is removed from the diet. If symptoms improve gluten is then slowly and carefully reintroduced into the diet. If symptoms then become worse again and cannot be attributed to any other factor, NCGS is diagnosed.
Why didn’t my doctor tell me about this condition?
Put very simply, your doctor is highly unlikely to have known about Non-Coeliac Gluten Sensitivity. The condition, and indeed its name, is so new that even specialists researching it have only just begun to understand what NCGS actually is.
Is there any way I can find out if I have Non-Coeliac Gluten Sensitivity?
Whilst there are a number of tests available via the NHS and privately that can offer some insight into food sensitivities, there is currently no clinical test for NCGS. This unfortunately means there is no option available to your GP which will enable them to help you diagnose NCGS. Researchers are working hard though to create a way to conclusively diagnose the condition.
If you frequently suffer from the symptoms listed above and are worried you may have coeliac disease, IBS or NCGS there are still a number of things you can do:
- First consult your doctor and tell them about your concerns, be sure to discuss the possibility of coeliac disease. If your family has a history of coeliac disease or dermatitis herpetiformis (a blistering skin condition), you should be tested for coeliac disease.
- If you have ruled out other conditions with the help of your doctor you may be diagnosed with Irritable Bowel Syndrome which can be managed with dietary changes, stress management techniques and some medicines. If you find managing your IBS difficult or would like more comprehensive support and advice you can consult a Registered Nutritionist (see the footnotes below for details on how to find one).
- If your symptoms remain hard to manage, you’re underweight or are unintentionally losing weight ask your doctor for a referral to a dietitian who is qualified to offer the therapeutic dietary advice you may need.
If you’re convinced gluten is the problem remember it’s never a good idea to remove a whole food group from your diet without professional guidance. If a gluten-free diet is something you’d like to explore the best people to turn to are Registered Dietitians or Registered Nutritionists (details given below in the footnotes).
If you would like to seek further advice and support you can speak with a Registered Dietician or Registered Nutritionist. In most cases a referral from your doctor is needed for you to consult a dietitian but further information is available from the British Dietetic Association.
If you would like to consult a Nutritionist you can search the UK Register of Nutritionists by visiting the Association of Nutrition website.
For information about Coeliac Disease visit the Coeliac UK website.
For more information about Irritable Bowel Syndrome visit the IBS Network website.
- Non-celiac gluten sensitivity - (Lundin & Alaedini, 2012), available here.
- Non-celiac wheat sensitivity diagnosed by double-blind, placebo controlled challenge: Exploring a new clinical entity - (Carroccio et al., 2012), available here.