This article was written by specialist gastroenterology dietitian – Cristian Costas
It’s Coeliac Awareness Week on the 9th of May 2022. Whilst Coeliac Disease is a condition that has been around for centuries- with clinical signs and symptoms of it dating back to 250 A.D , unfortunately to this day, it is still not a well understood condition. This article will highlight 5 key things most people do not know about coeliac disease in an attempt to raise awareness of the condition and help more people get diagnosed.
#1: Coeliac Disease is not an allergy or an intolerance
It is actually an autoimmune condition where the body attacks itself when gluten is eaten and this causes physical damage to the small intestine, which in turn can lead to symptoms and long-term complications if not treated .
With an allergy or an intolerance there is no gut damage and this is one of the reasons why the term ‘gluten intolerance’ is not interchangeable with coeliac disease.
#2: People with Coeliac Disease don’t only have gut symptoms
Historically people with Coeliac Disease have been expected to present with classical symptoms of unexplained weight loss, abdominal pain, bloating and diarrhoea. However, an increasing number of patients present with non-digestive symptoms.
A recent study  found that only around 27% of patients present with these classical symptoms, whilst around 52% of patients present with non-classical symptoms like constipation, anaemia, neurological disorders, osteoporosis and dermatitis herpetiformis (a type of skin rash).
Furthermore, people can also present with fatigue, mouth ulcers, headaches and brain fog, amongst other symptoms. This study also identified that around 21% present with no symptoms, which makes the diagnosis even harder. Due to these digestive and non-digestive symptoms and since the symptoms can be similar to other conditions like irritable bowel syndrome, it can take a long time to get diagnosed. Currently it takes on average 13 years  to get a diagnosis of coeliac disease and around 64% of people with coeliac disease remain undiagnosed .
#3: Gluten has to stay in your diet to get diagnosed
One of the reasons why many people still remain undiagnosed is because of the challenges with the diagnosis. According to the National Institute of Clinical Excellence [NICE] people with coeliac disease should have gluten in their diet at least once a day for 6 weeks prior to any coeliac disease test . The initial screening point for most people with coeliac disease tends to be a coeliac disease antibody test called an Immunoglobulin A Tissue Transglutaminase (IgA TTG) which can be requested by your GP.
However, for many people, keeping gluten in the diet for this long can be painful and debilitating, which can in turn make it very difficult to complete the gluten challenge. This can be even harder for certain patients that may then also be asked to do another gluten challenge so they can have an endoscopy test that takes a sample of the small intestine (a biopsy) to confirm coeliac disease-related gut damage. Despite these challenges, it is always important to get the right diagnosis.
Removing gluten from the diet without consulting with a doctor first can lead to missing a diagnosis of coeliac disease – or an alternative diagnosis.
#4: Even a crumb of gluten is harmful for people with Coeliac Disease
Unfortunately, the gluten free diet is the only treatment available. There are no alternative medications that can be taken to stop gluten from causing gut damage. Furthermore, it takes as little as 10-50mg of gluten to cause damage to the small intestine , which means that people with coeliac disease in essence need to avoid less than a crumb of gluten for life, which is by no means easy.
This involves constantly being vigilant to avoid gluten containing grains (mainly wheat, barley, rye and contaminated oats) from an ingredient point of view as well as from a cross-contamination point of view to ensure they have not come into contact with gluten free food in the cooking or manufacturing process. This makes eating out a true challenge too, as cooking methods always need to be enquired about to guarantee safety and research has shown that having to follow such a strict diet for life has an increased psychological burden compared to many other medical conditions .
#5: Coeliac Disease is a serious condition
As simple as it may sound to ‘just follow a gluten free diet’, coeliac disease management involves much more than this. Due to the damage that gluten can cause to the small intestine, people with coeliac disease are at higher risk of developing complications like osteoporosis and small bowel cancer (amongst others), which is further increased if the condition remains untreated . This is why this condition requires support from a dietitian to ensure the diet is implemented in the right way as well as having medical follow-up with a doctor for additional blood tests and investigations that may be required. According to the British Society of Gastroenterology, people with Coeliac Disease should be followed-up annually and also have an annual blood test .
I hope this article has helped raise awareness of a condition that is often misunderstood. A lack of awareness of this condition can result in more people with coeliac disease not getting encouraged to get diagnosed and it can also result in more people not receiving the necessary support they need once diagnosed.
- Gasbarrini GB, Mangiola F, Gerardi V, et al. Coeliac disease: an old or a new disease? History of pathology. Intern Emerg Med. 2014;9(3):249-256.
- Ludvigsson JF, Bai JC, Biagi F, et al. Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology. Gut. 2014;63(8):1210-1228.
- Caio G, Volta U, Sapone A, et al. Celiac disease: a comprehensive current review. BMC Med. 2019;17(1):142. Published 2019 Jul 23.
- Gray AM and Papanicolas IN. Impact of symptoms on quality of life before and after diagnosis of coeliac disease: results from a UK population survey. BMC Health Serv Res. 2010;10:105.
- West J, Fleming KM, Tata LJ, et al. Incidence and prevalence of celiac disease and dermatitis herpetiformis in the UK over two decades: population-based study. Am J Gastroenterol. 2014;109(5):757-768.
- National Institute for Health and Care Excellence. Coeliac disease: recognition, assessment and management. NG20. 2015 https://www.nice.org.uk/guidance/ng20 (accessed 17 April 2022).
- Catassi C, Fabiani E, Iacono G, et al. A prospective, double-blind, placebo-controlled trial to establish a safe gluten threshold for patients with celiac disease. Am J Clin Nutr. 2007;85(1):160-166.
- Shah S, Akbari M, Vanga R, et al. Patient perception of treatment burden is high in celiac disease compared with other common conditions. Am J Gastroenterol. 2014;109(9):1304-11