Some people are surprised when they are not diagnosed as having coeliac disease, a condition caused by an autoimmune reaction to the presence of gluten in the gut. In such cases, it may well be that gluten, a protein found in the cereals wheat, barley and rye, is the cause of their symptoms but it is not an autoimmune reaction that is causing them.
NCGS produce similar external symptoms to coeliac disease, and all of these conditions are caused by a reaction to gluten in the diet.
NCGS is a term used to describe the condition of people who cannot tolerate gluten in their food and experience symptoms similar to those who have coeliac disease – but without the same kind of intestinal damage as occurs in coeliac cases.
In coeliac disease the immune system directs antibodies to attack gluten, causing damage to the lining of the small intestine, where 90% of digestion and absorption of food occurs. The external symptoms are many and varied, including fatigue, malabsorption of nutrients, diarrhoea, bloating, rashes and constipation, among others.
Anyone who thinks they may have coeliac disease needs to get a blood test as a first step towards diagnosing the condition. A negative result can be confusing if a person believes that gluten is causing their symptoms. It could be that, although the person does not have coeliac disease, they do suffer from non-coeliac gluten sensitivity.
NCGS affects an estimated 18 million people in the United States – more than six times the number of people who have celiac disease.
NCGS is the name of the condition when a person experiences a reaction to gluten in their food but does not have coeliac disease, which, as we have seen, is an autoimmune condition that causes long-term damage to the intestine. Coeliac disease is always permanent.
The exact causes and origin of NCGS remains unclear. Research suggests that this condition is neither an autoimmune reaction like coeliac disease nor an allergic reaction as in, say, wheat allergy. Autoimmune antibodies like in coeliac disease are not involved, but immunological mechanisms may play some part.
Some research suggests that gluten alone may not be responsible for the symptoms produced by the condition known as gluten intolerance or sensitivity. Instead, it is possible that FODMAPs, a group of poorly digested carbohydrates, may be causing the symptoms. Wheat, barley and rye – the cereals that contain gluten – are all high in FODMAPs.
Another possibility is that amylase-trypsin inhibitors (ATIs), molecules found in wheat, barley, and rye, may be sparking the reaction that occurs in those with gluten sensitivity.
Like coeliac disease, gluten sensitivity is frequently misdiagnosed because it can manifest itself in such a wide array of symptoms. Here are some of the main symptoms of gluten sensitivity:
This is a feeling of being swollen or full of gas after eating, and it is a very common symptom for gluten sensitivity. In fact, one study showed that 87% of people who were suspected to have this condition experienced bloating on a regular basis.
Occasional diarrhoea is typically nothing to worry about, but if it happens regularly it might be a symptom of gluten sensitivity related to inflammation in the gut. More than 50% of people who have gluten sensitivity experience regular diarrhoea.
Not as common as diarrhoea but about 25% of people with gluten sensitivity suffer constipation.
Though abdominal pain and cramping can be linked to many health problems, it is the single most common symptom of NCGS, affecting up to 83% of sufferers.
Migraines affect more than 20% of people at some point in their lives, but research suggests that gluten-intolerant people are more prone to migraines than others.
Some studies show that 60% to 82% of gluten-intolerant individuals experience frequent tiredness and fatigue.
NCGS can contribute to skin problems like psoriasis, alopecia and chronic urticaria as well as a blistering skin condition known as dermatitis herpetiformis.
Some research suggests that people with gluten-related disorders have an over-sensitive nervous system which may contribute to joint and muscle pain. Gluten can also trigger inflammation in people who are sensitive to it, adding to widespread joint pain.
Numbness or tingling in the arms and legs is a surprising symptom of NCGS. The exact cause is unknown, but it may be related to antibodies produced by the immune system in cases of gluten intolerance.
This symptom affects roughly 40% of people with NCGS and the exact cause for it is unknown. Brain fog is an inability to think clearly that also has a cloudy aspect to it and a feeling of mental fatigue.
These symptoms and others including nausea may appear in any combination, making it extremely difficult to accurately diagnose gluten sensitivity. If you’re concerned that you have some of the symptoms on this list, it may be worth talking to your doctor. You might need blood tests or other clinical exams to determine whether you have coeliac disease and, if not, whether it might be gluten sensitivity.
No tests for NCGS have yet been accepted by the medical community as reliable. This means that the way to diagnose NCGS is by a process of exclusion, eliminating gluten from the diet.
If tests for coeliac disease and wheat allergy have both turned out negative, your doctor will probably recommend a gluten elimination diet. If symptoms improve, then you are likely to have a non-coeliac gluten sensitivity.
Please note that for before testing for coeliac disease, it is important not to change your diet so that the autoimmune reaction to the presence of gluten is still taking place.
If you have tested positive for coeliac disease or you have been diagnosed as gluten intolerant, the only effective course of action is to follow a strict gluten free diet, which will lead to a disappearance of the symptoms. You will no longer be able to eat foods that contain barley, rye, wheat, including farina, graham flour, semolina, durum, couscous and spelt.
You will need to learn which foods contain gluten, and must take some time reading labels on processed and packaged food for indications. If a food contains wheat, rye or barley in some form, then gluten will be present. Take care with cross-contamination in foodstuffs or when eating outside the home.
When buying packaged gluten free foods, look for products labelled “certified gluten free” to ensure the utmost safety. All Schär products are certified gluten free and made with quality ingredients.
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