COELIAC disease is a common condition, affecting 1 per cent of people. It is an autoimmune disorder caused by the body’s response to gluten found in wheat, barley and rye.
Ingestion of gluten in someone with coeliac disease causes the intestines to become inflamed, leading to malabsorption of nutrients. Symptoms include: diarrhoea; bloating; wind; abdominal pain; mouth ulcers; tiredness; and sometimes, unexpected weight loss.
The risk factors for coeliac disease include having a first-degree relative with the condition, type 1 diabetes mellitus, an autoimmune thyroid disease, Down’s syndrome or Turner syndrome.
The complications, as a result of malabsorption, include anaemia (due to iron, vitamin b12 and folic acid deficiency) and osteoporosis (due to calcium deficiency, as well as other nutrients).
Dermatitis herpetiformis (DH) is very itchy and persistent blistering skin eruption caused by allergy to gluten. It affects around one in 3,300 people, and one in 10 of them have a family history of it, or of coeliac disease.
The red rash occurs most commonly on the elbows, knees, shoulders, buttocks and face.
The treatment of coeliac disease and dermatitis herpetiformis is life-long avoidance of gluten-containing food. Alongside this, information, advice and support can contribute to ensuring that people with the condition have more positive outcomes.
While for most people, adherence to the specialist diet will quickly improve their symptoms, between 5 to 30 per cent will still have ongoing symptoms and for some, symptoms may persist for up to 12 months.
A large selection of staple gluten-free products is available on the NHS, and in Scotland the pharmacy gluten free food service means that patients no longer have to visit their GP to order their gluten free products.
It can be easy to forget the personal impact coeliac disease has on people with the condition, however research shows that it is significant.
People with coeliac disease experience grief due to the loss of their previously unrestricted diet, it also results in changes to their personal and social identities, with consequent loss of social confidence and social activities.
However, this grief is generally mitigated over time as adjustments are made, and creating (or becoming part of) a coeliac community has been identified as a strategy to help those with coeliac disease to re-establish their identities and increase social recognition and acceptance of the condition.
The restrictions on food choice which affect them also affect behaviour of others towards them. Little wonder then that in another study, around 20% of people who took part experienced some level of psychological distress such as anxiety, stress or depression with these issues seen more in women than men.
While changing the diet may seem like a relatively simple step, it’s important to bear in mind the bigger picture and also that while coeliac disease affects an individual, this also impacts on the entire family and how the family responds can affect quality of life.
But, while there is a role in supply of product, is there a role for community pharmacy in helping identifying people with coeliac disease?
Given that gastrointestinal symptoms are one of the most common reasons for people seeking advice or remedies from a pharmacy, there is potential for pharmacy teams to identify people who may be suffering from coeliac disease, but who are unaware.
However, a number of conditions share some similar symptoms to coeliac disease, so these need to be ruled out, for example, Crohn’s disease, ulcerative colitis, gastrointestinal cancer and irritable bowel syndrome (IBS). Careful questioning of patients who present in the pharmacy with gastrointestinal symptoms could help identify which patients need to be referred to the GP for further investigation (if there are red flag symptoms), and who can could be safely treated in the pharmacy.
It’s also important to consider that some patients who have self-diagnosed IBS may in fact be suffering from coeliac disease.
Claire Monks, Marketing Manager at Juvela, explains the importance of getting the diagnosis right: “It is now widely recognized that the symptoms of coeliac disease are very similar to those of IBS, and this may explain why some people take many years to get a proper diagnosis.”
“Getting the correct diagnosis is key both for the patient and commissioners, as the longer diagnosis is delayed, the longer people will feel unwell and incur repeated visits to their GP, and the greater the risk of other costly long-term complications such as coeliac disease related osteoporosis.”
Incredibly, only 24% who have coeliac disease have been diagnosed, so there are around 500,000 who have the disease, but are unaware.
Unlike IBS, which is based on symptoms alone, the diagnosis of coeliac disease involves a blood test to identify the presence of antibodies, after which a gut biopsy may be carried out.
NICE guidance is that there should be serological testing for coeliac disease for people with any of the following:
- Persistent unexplained abdominal or gastrointestinal symptoms.
- Faltering growth.
- Prolonged fatigue.
- Unexpected weight loss.
- Severe or persistent mouth ulcers.
- Unexplained iron, vitamin B12 or folate deficiency.
- Type 1 diabetes (at diagnosis).
- Autoimmune thyroid disease (at diagnosis).
- Irritable bowel syndrome (in adults).
- First-degree relatives of people with coeliac disease.
The results of a proof of concept study to test the feasibility of involving community pharmacies in active case finding of patients with coeliac disease have recently been published.
Customers accessing over-the counter and prescription medicines indicated in the treatment of possible symptoms of coeliac disease over a 6-month period were offered a free point of care test.
The Simtomax® test, measured both total immunoglobulin A (IgA) and IgA tissue transglutaminase antibodies (IgA tTGA),
with a finger prick of blood, and of the 551 individuals tested, 52 (9.4 %) tested positive.
However, while the study did identify people with coeliac disease, it’s important to note that current NICE guidance is that all serological tests should be undertaken in laboratories with clinical pathology accreditation (CPA) or ISO15189 accreditation.
Notwithstanding the fact that point of care testing is at the early stages for use in detecting coeliac disease, pharmacists and their teams can help identify those with symptoms that need further investigation.
Juvela’s Claire Monks believes that pharmacy teams have an important role to play not only in diagnosis, but also in the management of this long-term chronic condition: “Pharmacists are the frontline healthcare professionals who are uniquely placed to help both identify potential undiagnosed people with coeliac disease, as well as through the GFFS provide ongoing support. Poorly managed coeliac disease can lead to complications with costly investigations. With an annual health check patients can be more efficiently referred.”
Pharmacy teams can also help signpost people with coeliac disease, and especially those newly diagnosed, to self-help groups and resources that can make their life easier, including recipes and how to make the most of their gluten free foods.
With an average of 11 people diagnosed with coeliac disease per pharmacy, and a potential 34 people as yet undiagnosed, understanding, advising, and supporting those with the disease and helping to identify those as yet undiagnosed should be part of every pharmacists’ repertoire of professional skills.
Register with Coeliac UK
- People at increased risk or with symptoms of coeliac disease are offered a serological test for coeliac disease.
- People with a positive serological test for coeliac disease are referred to a specialist and advised to continue with a gluten-containing diet until diagnosis is confirmed. Statement 3.
- People referred to a specialist who need an endoscopic intestinal biopsy to diagnose coeliac disease have it within 6 weeks of referral.
- People newly diagnosed with coeliac disease discuss how to follow a gluten-free diet with a healthcare professional with specialist knowledge of coeliac disease.
- People with coeliac disease are offered an annual review.
 NICE CKS: Coeliac disease.
 Is it coeliac disease? Coeliac UK.
 Coeliac disease: recognition, assessment and management. NICE 2015
 Dermatitis herpetiformis. British Association of Dermatologists, 2016.
 Early detection of coeliac disease in community pharmacies – a proof of concept study.
 Rose, C. and Howard R. 2013 Living with coeliac disease: a grounded theory study. J Hum Nutr Diet. 2014 Feb;27(1):30-40. doi: 10.1111/jhn.12062. Epub 2013 Mar 21.
 Ford, S., Howard, R. and Oyebode, J. (2012), Psychosocial aspects of coeliac disease: A cross-sectional survey of a UK population. British Journal of Health Psychology, 17: 743–757. doi:10.1111/j.2044-8287.2012.02069.x