An interview with Norma McGough, Director of Policy, Research and Campaigns at Coeliac UK, debunking some of the common myths surrounding coeliac disease and helping to raise awareness of the condition.
Cases of coeliac disease have been steadily rising for the past decade. What do you think is driving this increase?
The increase is due to greater awareness of coeliac disease, its symptoms, and the process for diagnosis of coeliac disease. Over the last couple of decades, there’s been a significant increase in diagnosis and diagnosis rates of coeliac disease because of the availability of blood tests that GPs can use to screen for coeliac disease in a primary care setting. The blood tests detect specific IgA antibodies, which are produced by patients with coeliac disease in response to eating gluten.
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What’s the difference between coeliac disease and gluten intolerance?
In gluten intolerance or sensitivity people may have the same symptoms as in coeliac disease. These include gut problems, stomach pains, nausea, vomiting, diarrhea or constipation, or excessive wind and bloating. With gluten intolerance, however, there is no immune-mediated reaction or associated production of antibodies as in coeliac disease which is an autoimmune condition.
In addition, coeliac disease is characterized by specific genetic types and typical damage to the lining of the small bowel which heals once gluten (found in food containing wheat, barley, and rye) is eliminated from the diet.
A recent press release by Coeliac UK states that it takes an average of 13 years to receive a diagnosis of coeliac disease in the UK. Why is this?
The press release was based on research from the University of Oxford, Health Economics Research Centre reporting that from the time patients first went to their doctor with the symptoms of coeliac disease, on average, it took 13 years for people to get a confirmed diagnosis.
That’s an average figure, so some people may have taken longer than 13 years. Often, patients go back and forth having investigations or treatment for other conditions and seeing their doctor because they are unwell with the symptoms of coeliac disease.
These findings highlight the issues surrounding the under diagnosis of coeliac disease, because having stomach pain, having excessive wind and having diarrhea are general symptoms that everybody gets at some point in their life. When these symptoms occur regularly or become an ongoing issue, that should trigger you to think, “I need to go to the doctor and get these symptoms checked”.
We need to educate GPs to make sure that they are aware of the generality of the symptoms and also that a simple blood test, which is cost-effective for the NHS can be used to screen for coeliac disease and to at least eliminate coeliac disease as being the cause of those symptoms.
Another problem, which was highlighted by our awareness campaign back in May, is research that shows that one in four people diagnosed with coeliac disease have previously been treated for IBS. NICE, the Nation Institution of Health and Care Excellence, a body that provides clinical guidance to the NHS, issues guidelines for both IBS and coeliac disease, that state a doctor should screen for coeliac disease before confirming a diagnosis of IBS. Based on available research, this is still not happening.
We have an ‘Is it coeliac disease?’online survey on our website that people can use to help them decide whether to go to the doctor about their symptoms. It’s worth going through it if you’re suffering from some of the symptoms and thinking, “Oh, I don’t know if it warrants going to the doctor.”
The current blood tests for coeliac disease often produce false negative results. Why is this and what other diagnostic options are available for those who have all the symptoms of coeliac disease?
There are two blood tests that are recommended for screening for coeliac disease, both of which detect IgA antibodies, one of them detects tissue transglutaminase antibodies, and the other detects endomysial antibodies. They are both specific to coeliac disease but most GPs in UK will use the tissue transglutaminase antibody test. NICE sets out information about the use of these antibody tests in screening for coeliac disease in the NICE clinical guideline on coeliac disease (NG20), produced in 2015.
For the screening tests to work, people need to be on a gluten containing diet because gluten triggers the abnormal immune response that produces the antibodies that are the markers of coeliac disease. Once on a gluten free diet, which is the treatment for coeliac disease, the antibodies disappear, so it is important to continue to eat a normal diet that contains gluten whilst going through the screening and diagnosis process, otherwise you could get a false negative result.
Even if gluten intake has been reduced but not eliminated, in response to feeling ill, it could still affect the results of the blood test. The advice from NICE is to have 6 weeks of a normal, gluten containing diet prior to testing.
There is another condition, where people have IgA deficiency. This makes it difficult to test for coeliac disease using the recommended antibody tests. Instead, IgG antibody tests may be used. NICE therefore recommends that when the doctor is screening for coeliac disease they also check for IgA deficiency at the same time.
Gut symptoms are typical for coeliac disease, but there are many other manifestations. One symptom, which you would need to have a blood test for, is anaemia, iron deficiency anemia, or folic acid or B12 deficiency.
There could be other manifestations or symptoms. People with coeliac disease complain of extreme fatigue or tiredness, which is not a symptom that is unique to coeliac disease but is typical. In children, changes in growth could indicate that there’s some malabsorption, and the nutritional deficiencies as a result of that malabsorption cause a change in growth.
How long does it take for the symptoms of coeliac disease to abate after gluten is removed from the diet?
After gluten is removed from the diet, generally speaking, people start to feel better within days. However, this depends on a number of factors and can vary from person to person. Some research studies suggest that it can take some people up to five years for complete gut healing, but for the majority of people it takes up to two years.
What are some unexpected dietary sources of gluten?
Gluten is found in the grains wheat, barley, rye and some people may also be sensitive to gluten free oats. Obvious sources of gluten include flour based foods eg bread, pasta, cakes, biscuits and crackers. Beer contains gluten, which is unexpected for some people due to the fact that brewing uses barley malt. However, there are gluten free versions available. Other food products that may contain gluten are gravies and stock cubes, or seasoning mixes.
Soups might contain barley or wheat. Soy sauce may also contain gluten as it contains wheat but you can get gluten free soy sauce. When buying pre-packed foods nowadays, under allergen labelling legislation, gluten has to be labeled if present as a deliberate ingredient in the ingredients list as wheat, barley, rye, or oats.
Even chocolate can be contentious, not because flour would be added to chocolate, but rather because there may be cross-contamination in the way the chocolate is manufactured or packaged.
A range of flour based gluten free alternatives to bread make life a lot easier for people with coeliac disease managing a gluten free diet. An important rule of thumb is if you are wanting to bake or use a flour, you must always choose a flour that’s labelled gluten free to make sure that it does not contain gluten. You want to make sure it’s gone through the necessary quality controls and separation to make sure that it’s not contaminated with wheat flour.
Conversely, there are products that don’t contain any gluten, but people think that they do. For instance, people always think mustard contains gluten. There are some ready-made mustards that might have wheat as an ingredient, but most mustards don’t have gluten. Also, vinegar is generally falsely considered to contain gluten because it’s made by a fermentation process using a barley ingredient.
Should patients with coeliac disease check for gluten in cosmetics and personal hygiene products too?
No, because the gluten needs to be eaten to be a significant issue and the idea of needing to select gluten-free washing up liquid or gluten-free toothpaste is a myth. The trouble is you could have a reaction to cosmetics or products and think that it’s due to gluten because you can be sensitive to ingredients but not gluten.
There is an international standard which is 20 parts per million or 20mg/kg or less to be considered gluten free. That’s a legal standard which is used in many other countries including the USA and Europe not just the UK.
What are the main health complications of coeliac disease if left unmanaged?
The main problems and complications associated with coeliac disease if it’s not treated or diagnosed, is that you have ongoing gut damage and malabsorption of the nutrients in your food, causing nutritional deficiencies like anaemia and also resulting in osteoporosis due to chronic calcium malabsorption.
As we get older, osteoporosis becomes a more common problem. We reach peak bone health in our 30s. From then on, we all start to attain thinner bones. With coeliac disease, if people are diagnosed later in life, after they’ve reached peak bone mass, it’s going to be more difficult for them to achieve a healthy bone density in older age, because they’re already starting off from a lower level.
About 40 percent of adults will show signs of osteopenia, which is thinning of the bones, or osteoporosis, at diagnosis. That is a big issue, but being on the gluten free diet strictly for a year has been shown to improve bone density.
There are other manifestations and complications in coeliac disease. These include neurological conditions which are rare and more associated with later diagnosis but can manifest as problems with coordination, peripheral neuropathy, tingling and sensitivity, or lack of sensitivity.
Involvement of neurologists, diagnosis and strict adherence to a gluten free diet has been shown to improve symptoms if identified early enough. There is also a rare form of coeliac disease which does not respond to the diet called refractory coeliac disease which requires specialist treatment and is associated with an increased risk of malignancy.
If you could send one message to someone struggling with a recent diagnosis of coeliac disease, what would it be?
I’d say don’t panic. There is plenty of support available and you are not alone. Joining a charity such as Coeliac UK can also help. We have a wealth of information and support that can help. It’s a steep learning curve after diagnosis, but the more you understand about coeliac disease, and the gluten free diet, the better you’ll cope.
Please can you tell us about Coeliac UK and how people can get involved in the charity?
Coeliac UK is a national charity for people who are living without gluten in their diet, whether it’s due to coeliac disease or other medical condition requiring gluten free diet. We know that 1 in 100 people in the UK have coeliac disease, although there’s half a million that have coeliac disease and don’t know it.
At Coeliac UK, we provide information via our helpline and website. We can also provide information packs for people, if they prefer that.
We have apps too, which can help people to manage their gluten free diet and understand more about their coeliac disease. You can use this to scan or look up foods when shopping to check if they contain gluten.
There are hundreds of products listed, not just products that are labeled gluten free but products that don’t have gluten in, that will help to reassure when shopping. We also have a food and drink guide, which is a printed copy to help with that, and other information around the gluten free diet.
We have things like a venue guide online, which is also available on the app. We have a recipe database, if you’re wondering about how to bake a cake gluten free. We also have community support, whether it’s online on the social media platforms like Facebook or Twitter.
We also have community support in terms of local groups. We have 65 local groups across the UK, and that may appeal to some people to go for coffee mornings or meetings where there’ll be presentations about coeliac disease, or just get-togethers to be able to share information and support each other.
Finally, one of our main goals is to fund research. Research has been pivotal in what we do, because it’s important to keep improving the knowledge base around coeliac disease and the gluten free diet. Therefore, we also have members who are healthcare professional who are particularly interested in coeliac disease, as well.
We take part in events that are run by other people, but we also have our own events where we have local food fests, so that food manufacturers producing the gluten free products can exhibit. This might be useful when you’re newly diagnosed, to understand exactly what products are available, not just within retail.
Where can readers find more information?
- The Coeliac UK helpline number is +443333322033
- Coeliac disease online assessment tool – isitcoeliacdisease.org.uk
- Coeliac UK website
- Gluten-free diet information sheet by Coeliac UK
- Gluten-free food checker app by Coeliac UK
About Norma McGough
Norma began her career as a registered dietitian in the National Health Service (NHS). In the last 20 years, she has worked in the voluntary sector, leading teams at both Diabetes UK and Coeliac UK. Norma has been working at Coeliac UK since 2003 and is currently Director of Policy and Research.
As a member of the senior management team, her role is pivotal in the strategic development of the charity’s knowledge base. Norma also plays a key representational role among key stakeholders in the health and food sectors.