Coeliac disease (CD) is not a minor ‘intolerance’ to gluten, it is an autoimmune condition where the body’s immune system attacks the small intestine, reducing the ability of the body to absorb nutrients from food. If left undetected, CD has the potential to cause significant long-term health complications. CD is one of the most common life long disorders in North America and Europe and only 1 in 8 coeliacs are ever diagnosed. These are disturbing facts.
Diagnosis of CD currently requires a positive blood test and then subsequently the detection of damage to the small intestine via an endoscopy.
The first problem is that less than 50% of coeliacs are presenting with the classical symptoms of diarrhoea and abdominal cramping. The majority of coeliacs are ‘silent’ in their presentation – no overt digestive symptoms but are presenting with signs and symptoms including iron deficiency anaemia, osteoporosis, arthritis, neurological degradation, depression, fertility issues, migraines and chronic kidney disease. This point alone, is likely to be having a significant impact on whether testing for CD is even to be considered.
The next potential issue is with the blood testing itself. The standard NHS test for CD is good if you are presenting with significant damage to the small intestine and your immune system is functioning properly. We know however that damage to the small intestine is a gradual process that can take years or even decades to manifest, the immune system is often underperforming and the markers being measured for are not broad enough. This can lead to very high rates of false negative results (up to 70%), which is a dangerous outcome if the result is that you are told that it is fine to consume gluten, when in fact it is not! Remember you have to be eating gluten and not taking any steroid or immune suppressing medication for any blood test to have half a chance of picking up an issue.
Finally, it is possible to have positive blood markers for CD and no damage to the small intestine – ‘latent’ CD (over and above the fact that the biopsies can often miss the ‘damaged’ areas of the small intestine).
Is it any wonder that CD is such a poorly diagnosed and managed condition?