This week is Coeliac Awareness Week, so we thought we’d give you an overview to #ShineALightOnCoeliac
Coeliac disease is NOT an allergy or food intolerance. Gluten intolerance is different to coeliac disease, which is a serious autoimmune condition where the body attacks and damages its own tissue within the gut, in response to eating gluten. Gluten is the protein found in wheat rye and barley. It can also contaminate oats but is not naturally present within them. 1 in 100 people in the UK have coeliac disease, but many go undiagnosed. If it’s left untreated it can cause damage to the gut, poor absorption of nutrients and other health complications such as osteoporosis . Symptoms of coeliac disease are common to many other conditions (it’s frequently misdiagnosed as IBS) and it is thought to take on average 13 years  to be diagnosed!
What causes coeliac disease?
The causes are still unknown. There is a genetic component and we know the genes for coeliac disease are present in around 1/3 of the UK population, but in some people, they are expressed and in others, they are not. Your chances of having it increase to 1 in 10 if a first-degree family member has it.
What are the symptoms?
Some people have no symptoms at all, but potential symptoms can be split into a couple of categories:
- Digestive: loose stools, reflux, flatulence, abdominal pain, vomiting, constipation, weight loss
- Non-digestive: iron deficiency, dermatitis herpetiformis (skin rash), osteoporosis/osteopenia, mouth ulcers, headaches, anxiety, depression, fatigue, brain fog
A study in 2019  found around a third of patients present with the classical digestive symptoms outlined above; just over half presented with “non-classical” symptoms; and around 20% presented with no symptoms at all, making diagnosis often difficult.
How is it diagnosed?
If you have any of the above symptoms, it’s essential to have a screen for coeliac disease through your GP, BEFORE making any dietary changes. You can take an online questionnaire which you can print out to discuss with your GP.
The current recommendations by the National Institute of Clinical Excellence (NICE) are to ensure you are eating gluten for 4-6 weeks before your blood test to avoid an inaccurate result . This means consuming around 8-10g of gluten per day, which is the equivalent of around 4 slices of bread.
Your GP should test the following:
- Tissue transglutaminase (TTG).
- Total IgA. This is important to prevent a false negative as if you do not make the usual coeliac antibodies, the blood test will not be positive
If your blood test is positive or raised, you may be referred to a gastroenterologist (a doctor who specialises in the gut), who will complete an endoscopy with biopsies. This involves a small camera entering your gut and tissue samples being taken which are then looked at under a microscope so damage can be assessed. If there is damage to the villi which line the gut, coeliac disease is diagnosed.
Whilst there’s research underway that may be able to develop a test that doesn’t rely on someone having to eat gluten, for now it remains really important to include gluten in the diet until all tests are completed. We know that this can cause some people to feel ill and uncomfortable, but getting accurate test results are essential for your long term health. Your GP may be able to help you manage your symptoms whilst tests are being carried out.
What about the genetic test?
There is a genetic test for coeliac disease, however, it is important to note that this is not diagnostic and often not available on the NHS!
It can be used in a small cohort of patients who have already excluded gluten, and require testing but experience significant symptoms when they reintroduce gluten into their diet. If this test is negative, coeliac disease can be excluded. If the result is positive, it shows you have the potential to develop the disease and it is then recommended to reintroduce gluten for a diagnosis. The genes we look at are HLA DQ-2 and HLA DQ-8.
What is the treatment?
The treatment is a lifelong gluten-free diet. All wheat, rye and barley should be avoided and oats should be gluten-free. There is a protein in oats called avenin, which is similar in structure to gluten, but for most people with Coeliac disease, this does not need to be avoided.
Even tiny levels of gluten can damage the gut in someone with coeliac disease, so it’s important to not only avoid gluten as an ingredient but also to avoid any cross-contamination. This means avoid sharing chopping boards, toasters and spreads with people who have gluten in their diet. Wipe down surfaces and clean cutlery, plates and pans well.
Your GP or gastroenterologist should refer you to a dietitian after diagnosis where you can receive individual advice and education. The British Society of Gastroenterology recommends an annual review via your GP, gastroenterologist, or dietitian where you’ll have a blood test, your symptoms reviewed, and your diet assessed . For children they require follow up 6-12 months after diagnosis and then annually, as well as having their growth and development monitored.
@coeliacuk provides advice and support to help individuals live well whilst gluten-free, and we recommend that anyone with a new diagnosis joins as a member to access a welcome pack, food and drink guide and access to the award-winning digital app.
Conditions linked to coeliac disease
Studies suggest that when diagnosis of coeliac disease is raised, the chances of developing other autoimmune disorders increase. People with Type 1 diabetes and autoimmune thyroid disease have a higher risk of having coeliac disease .
Dermatitis herpetiformis is a skin condition linked to coeliac disease . It presents as red, raised patches of skin that are often very itchy and can have blisters that burst upon scratching. It is commonly found on the elbows, knees and buttocks although it can appear anywhere on the body. Diagnosed by a skin biopsy, the treatment is a lifelong gluten-free diet, as with coeliac disease, although it can take a couple of years for skin symptoms to improve.
Osteoporosis risk increases the longer someone remains undiagnosed or untreated, as the body may not be able to absorb calcium properly. People with coeliac disease have higher calcium requirements, and their dietitian will be able to assess their intake and make recommendations on how to meet these raised requirements.
Your dietitian will also look at your dietary sources of iron as someone with coeliac disease is at higher risk of anaemia which can lead to fatigue.
Coeliac disease and the gut microbiome
It has been suggested that the gut microbiome (the trillions of micro-organisms living within our gut) is involved in the development of coeliac disease . It’s still early days in terms of research but alterations in the gut microbiota have been linked with other autoimmune conditions, and intestinal dysbiosis (imbalance) is common in coeliac disease, with some studies suggesting the bacteria we have (or don’t have) may have an impact on the symptoms displayed .
Following a gluten-free diet has been linked to lower intakes of fibre, which we know feed our gut microbes. Therefore, optimising the diet for gut health and overall health is important.
We have team members here at The Gut Health Clinic who can assess you for coeliac disease and liaise with your GP if you’re displaying symptoms but not yet seen them. Upon a diagnosis, our team will guide you through both the gluten-free diet and extra nutritional requirements, as well as discuss how you can optimise your gut health to support you for the long term. If you’re displaying any of the symptoms of coeliac disease get in touch with your GP or book a session with one of the team today.
- Ludvigsson JF, Bai JC, Biagi F, et alDiagnosis and management of adult coeliac disease: guidelines from the British Society of GastroenterologyGut 2014;63:1210-1228.
- 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.
- Caio, G., Volta, U., Sapone, A. et al. Celiac disease: a comprehensive current review. BMC Med 17, 142 (2019). https://doi.org/10.1186/s12916-019-1380-z
- 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).
- Cohn A, Sofia AM, Kupfer SS. Type 1 diabetes and celiac disease: clinical overlap and new insights into disease pathogenesis. Curr Diab Rep. 2014;14(8):517. doi:10.1007/s11892-014-0517-x
- Reunala T, Hervonen K, Salmi T. Dermatitis Herpetiformis: An Update on Diagnosis and Management. Am J Clin Dermatol. 2021 May;22(3):329-338. doi: 10.1007/s40257-020-00584-2. PMID: 33432477; PMCID: PMC8068693.
- Valitutti F, Cucchiara S, Fasano A. Celiac Disease and the Microbiome. Nutrients. 2019 Oct 8;11(10):2403. doi: 10.3390/nu11102403. PMID: 31597349; PMCID: PMC6835875.
- Wacklin P, Kaukinen K, Tuovinen E, Collin P, Lindfors K, Partanen J, Mäki M, Mättö J. The duodenal microbiota composition of adult celiac disease patients is associated with the clinical manifestation of the disease. Inflamm Bowel Dis. 2013 Apr;19(5):934-41. doi: 10.1097/MIB.0b013e31828029a9. PMID: 23478804.