The definition of non-coeliac gluten sensitivity goes back to 1986, and there are sporadic reports of this entity but not as strong as in the past few years. Interest has increased after recent advances enabling us to make a clear differentiation between coeliac disease and gluten sensitivity.1 2 3 4
It is now becoming clear that, besides those with coeliac disease or wheat allergy, there are patients with gluten sensitivity in whom neither allergic nor autoimmune mechanisms can be identified.5 6 It has been estimated that, for every person with coeliac disease, there should be at least six or seven people with non-coeliac gluten sensitivity. Gluten sensitivity may therefore affect 6-10% of the general population. This means approximately 4-7 million people in the United Kingdom have this condition, and the vast majority are unaware of their sensitivity to gluten.5 6 7 8 9 10 11 12 13 14 15
Patients with gluten sensitivity have negative immuno-allergy tests to wheat and negative coeliac disease serology; normal endoscopy and biopsy; clinical symptoms that can overlap with those of coeliac disease, irritable bowel syndrome, and wheat allergy; and they show a resolution of symptoms when started on a gluten-free diet.16 17 18 19 20
This patient’s history is a classic example of severe gluten sensitivity. He describes how gluten has affected his digestive system, his skin, his nervous system, muscles and joints, sleep, and mood, and even his so called incurable interstitial cystitis. I met the patient after a long history of ill health. He was frustrated with the lack of a diagnosis to explain his symptoms. He underwent gastroscopy and colonoscopy in 2009. Duodenal biopsy and serology for coeliac disease came back negative.
Despite being highly educated with a degree in biochemistry, he had to give up his career and wait for decades before being diagnosed with gluten sensitivity. This is disconcerting if we think about how many people are possibly experiencing similar symptoms, with the added drawback of poor health literacy. I greatly admire the way he managed to find a solution for the unresolved symptoms he had experienced for decades. Despite the fact that he responded well to a gluten-free diet, it was still important for him, as it is for most patients, to have a diagnosis that can explain the symptoms.
His weight was inversely related to his gluten intake. Although weight loss can be a feature of coeliac disease and gluten sensitivity, it is less common in atypical forms of both conditions.21
Currently there are no laboratory biomarkers specific for gluten sensitivity, and the diagnosis is based on exclusion criteria; elimination of gluten-containing foods from the diet followed by an open challenge is most often used to establish whether health improves with the elimination or reduction of gluten from the patient’s diet.1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 As rightly reflected in a recent BMJ editorial, increasing people’s ability to understand and engage in their healthcare is an international priority. At the same time, however, educating healthcare professionals about this highly prevalent and under-recognised condition is strongly recommended.
Kamran Rostami
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