How is Coeliac disease treated?
The gluten-free diet
Currently, the only effective treatment for coeliac disease is the gluten-free diet. As the name suggests, the gluten-free diet involves strict avoidance of gluten, a composite of proteins found in grains such as wheat, barley, and rye. Removing dietary gluten prevents the abnormal immune reaction that causes coeliac disease symptoms and allows the bowel to heal (i.e. mucosal healing).
Gluten is found in a multitude of food products and following the diet can be challenging, particularly in the beginning. It can take some time to feel confident, particularly when eating out of the home and in unfamiliar places. Fortunately, knowledge of coeliac disease and gluten-free food options are becoming more widespread.
Most people that adopt the diet can expect to experience an improvement in their symptoms which for some people can occur within a few weeks. It is essential to follow the diet closely as gluten exposure can cause symptoms to re-emerge. It only takes exposure to small amounts of gluten to damage to the bowel and increase the risk of long-term complications, even if you are symptom-free.
- Wheat (including wheat starch and other wheat derivatives such as spelt, durum, bulgur, semolina etc.)
- For people with coeliac disease living in Australia and New Zealand, the Food Standards Code also excludes oats as part of the gluten-free diet. This is in contrast to other regions such as the US, Europe and the UK where contamination free oats are allowed in the gluten free diet.
Common gluten-containing foods include-
- Pastries and baked goods
- Breakfast cereals
Maintaining optimal gluten-free diet adherence
The rate of gluten-free diet adherence is often sub-optimal, with strict adherence rates variable and ranging from 40% to 90% of individuals, depending on the group studied and the definition of adherence. Although the availability of gluten-free food options has improved in recent years, a significant number of people still report sub-optimal adherence.
Research has found better gluten-free diet adherence to be associated with
- Membership of a coeliac disease patient advocacy group
- Better knowledge regarding gluten-free eating and potential sources of gluten exposure
- Confidence in eating gluten-free outside the home (e.g. at work, when travelling, dining out, social events)
- More favourable view of the outcome of adherence (i.e. stronger beliefs in the benefits of the gluten-free diet)
- Belief that the gluten-free diet is important to one’s health
As these findings suggest, those that are better at following the gluten-free diet tend to have a good base knowledge of gluten-free eating, understand and value the purpose of the diet, and are able to maintain the diet in situations that are not always easy. Fortunately, these factors relate to knowledge and skills that can be developed and refined with time and experience.
While strict gluten-free eating is essential for preventing symptoms and long-term complications, good dietary management also encompasses your emotional health. Gluten-free eating can be challenging but should not feel restrictive or take the joy out of food.
There are many things you can do to make the experience feel less restrictive and more enjoyable. Awareness of coeliac disease has risen considerably in recent years and this has brought forth an abundance of gluten-free cookbooks and, for most people, gluten-free products to explore. Coeliac disease patient advocacy groups can be an excellent, reputable source of information regarding gluten-free cooking and dining out.
There are also countless coeliac disease social media communities dedicated to sharing experiences and gluten-free eating tips. Connecting with others going through the same experience can also help you feel less isolated, particularly if you have been diagnosed recently. It is important to bear in mind though that, by their nature, social media (and the internet, generally) contains information of varying quality and accuracy. If you are unsure about the credibility of a given source of information, ask a member of your healthcare team.
The gluten-free diet remains the only safe and relatively effective long-term treatment for coeliac disease. Supplements may be useful if there are nutrient deficiencies. Refractory coeliac disease (i.e. persistent illness despite adherence to the gluten-free diet) is a rare complication of coeliac disease (affecting less than 1% of all cases) and often requires treatment with immunosuppressive drugs (e.g. azathioprine), corticosteroids (e.g. budesonide) and in some cases biological agents or chemotherapy.
Some people with coeliac disease will also exhibit dermatitis herpetiformis, a skin condition causing raised, very itchy bumps over the elbows, knees, buttocks and shoulders. A medication called Dapsone is used to quickly settle down the rash and the gluten-free diet remains the long-term treatment to help control it.
Coeliac disease can cause malabsorption of food components, resulting in nutritional deficiencies. Similarly, those that are strictly adherent to a gluten-free diet and have a healthy bowel may suffer nutritional deficiencies related to eating a highly restricted, unbalanced diet. Additional supplementation may be beneficial, depending on your diet and current disease state. Following your diagnosis, you should make an appointment with your general practitioner to test for nutritional deficiencies.
Potential deficiencies include-
- Vitamin D
- Vitamin B12
Supplementation can be helpful in some situations. Consultation with your doctor and an accredited dietitian can reduce the risk of nutritional deficiencies by ensuring that the underlying disease is under control (i.e. mucosal healing, no malabsorption) and that your diet is nutritionally balanced.
Getting ‘glutened’ – dealing with the symptoms of gluten exposure
The risk of accidental gluten exposure is reduced in those with good knowledge of gluten-free eating. Nonetheless, accidental gluten exposures can and do occur – often due to factors that are out of your control. Reactions to gluten exposure commonly affect the gastrointestinal tract, and include nausea, vomiting, bloating, abdominal pain and diarrhoea. Headache and lethargy are also common. These reactions vary considerably between people in terms of severity, type and onset, with some people being more sensitive than others.
Symptoms generally commence several hours after exposure but for some they can occur within 30 minutes and for some they are delayed by many hours. The amount of gluten consumed will also affect the severity of the reaction. Symptoms after gluten mostly settle within 1-2 days and avoidance of further gluten exposure.
When possible, try to identify the situation that led to the “glutening” so it can be avoided in the future. Being “glutened” can be very stressful and to aid recovery, it is important to ensure adequate rest and fluid intake.
- Rest. Taking a brief break from work or other obligations can allow you the time you need to recuperate without additional stressors. Consider reaching out to friends or family members if you are unwell and struggling with errands or other responsibilities.
- Hydration. Symptoms such as diarrhoea and vomiting can cause a loss of fluids and cause dehydration. Water and electrolyte replacement preparations (e.g. sports drinks) can help with this.
More severe symptoms can sometimes be helped by additional treatments. For example, for severe vomiting, doctors sometimes prescribe anti-vomiting medications such as ondansetron wafers (e.g. Zofran).