Coeliac disease FAQs
Frequently Asked Questions
What is coeliac disease and dermatitis herpetiformis?
Coeliac disease is caused by a reaction of the immune system to gluten. The symptoms include:
- mouth ulcers
- sudden weight loss
Once diagnosed, it is treated by following a gluten-free diet. Dermatitis herpetiformis is the skin manifestation of coeliac disease.
How common is coeliac disease?
It is thought that one in 100 people in the UK has coeliac disease but only 36% of these people are diagnosed. We estimate there are nearly half a million people who have coeliac disease but aren’t yet diagnosed.
What are the symptoms of coeliac disease?
The symptoms of coeliac disease vary from person to person and can range from very mild to severe. Common symptoms include:
- frequent bouts of diarrhoea or loose stools
- nausea, feeling sick and vomiting
- stomach pain and cramping
- lots of gas and bloating
- feeling tired all the time, ongoing fatigue
- anaemia (you would be told if you’re anaemic following a blood test)
- weight loss (although not in all cases)
- regular mouth ulcers
- constipation or hard stools
- skin rash (dermatitis herpetiformis, the skin manifestation of coeliac disease).
If you have any of these symptoms, you can take our online assessment which is a short questionnaire on symptoms and other risk factors for coeliac disease.
What are the symptoms in babies?
In babies, symptoms may develop after weaning onto cereals that contain gluten.
Symptoms in babies include:
- bloated tummy
- diarrhoea and other gut symptoms
- faltering growth or a change in growth pattern
Find out more about coeliac disease in children here or you can call our helpline and speak to one of our dietitians.
What are the tests for coeliac disease?
The first test for coeliac disease is a blood test done by your GP that looks for antibodies that the body makes in response to eating gluten. If the blood test is positive, your GP will then refer you to a hospital specialist (gastroenterologist) for an endoscopy with biopsy.
In some cases, an endoscopy might not be needed to diagnose coeliac disease. Guidelines published in June 2020 in response to the Covid-19 pandemic recommend that some adults can be diagnosed without the need for a biopsy if they:
- are 55 years or younger
- don't need an endoscopy to rule out another condition
- have symptoms of coeliac disease
- have very high antibody levels (if IgA tTG is at least 10 times the upper limit of normal)
- and have a second positive antibody blood test (EMA or IgA tTG if EMA is not available)
If you have any concerns about testing, the best thing to do is to talk with your healthcare team.
You can also take Coeliac UK’s online assessment to find out if your symptoms may be caused by coeliac disease.
How long do I have to eat gluten before being tested?
The recommendation is to eat some gluten in more than one meal every day for at least six weeks before getting tested for coeliac disease. Find out why you should keep eating gluten throughout the diagnosis process.
Why do I have to be eating gluten to be tested?
The blood tests look for antibodies that your body produces when you eat gluten so if you are not eating gluten you will not be producing antibodies and so the result will come back negative.
It is recommended that you eat some gluten in more than one meal every day for at least six weeks before testing.
Can you recommend a coeliac disease specialist consultant for me to see?
Is there a cure for coeliac disease?
Coeliac UK funded the initial project of Professor Bob Anderson which identified the most important gluten peptides causing problems for people with coeliac disease. This research formed the basis of further research and eventually the development of the NexVax2 vaccine. Work in this area is ongoing, the availability of a vaccine is still many years away whilst the essential process of testing for safety, dosage, effectiveness and possible side effects are determined.
Coeliac UK has also funded research which provides a greater understanding of the disease process in coeliac disease and research which can potentially identify new targets for treatment or a cure.
Is coeliac disease the same as an allergy to wheat?
Coeliac disease is not the same as an allergy to wheat. Coeliac disease is a well defined, serious illness where the body’s immune system attacks itself when gluten is eaten. This causes damage to the lining of the gut and means that the body cannot properly absorb nutrients from food.
Coeliac disease is not a food allergy or intolerance, it is an autoimmune disease.
Wheat allergy is a reaction to proteins found in wheat, triggered by the immune system and usually occurs within seconds or minutes of eating.
If I have coeliac disease, are my children more likely to also have it?
Coeliac disease does run in families but not in a predictable way. Around one in ten close relatives of people with coeliac disease (for example, father, mother, son, daughter) will be at risk of coeliac disease.
So if you have a relation with coeliac disease you should be aware of the symptoms.
Can only children get coeliac disease?
Coeliac disease can develop and be diagnosed at any age. It may develop any time from after weaning to later in life and any time between. Coeliac disease is most frequently diagnosed in people aged 50-70 years old. Delayed diagnosis is common, Coeliac UK research shows the average time it takes to be diagnosed is 13 years.
What happens if someone with coeliac disease eats gluten by mistake?
The reaction to eating gluten varies from person to person. In some people, it may trigger symptoms that last several days, while others might not experience any symptoms at all. The amount of gluten someone eats affects the degree of gut damage and your individual sensitivity to gluten affects the symptoms you may or may not experience. You may also find that your symptoms differ in type and/or severity compared to before you were diagnosed.
If a mistake is made and you have gluten by accident, it is unlikely to cause any long term gut damage, although you may suffer from diarrhoea, abdominal pain or vomiting so it is important to stay hydrated by drinking lots of water. You may find taking medication to treat constipation, diarrhoea or headaches can ease your symptoms. Speak to your GP or pharmacist for further advice.
I have coeliac disease, when should I wean my baby?
Babies who have an increased risk of coeliac disease should be weaned in the same way as any other child.
Find out more about feeding your baby here.
I have just been diagnosed with coeliac disease, how can I join Coeliac UK?
Coeliac UK gives you up to date information and support about your diet and health and as a Member, you will also have access to a range of exclusive services. You can join online or contact our Membership Team on 0333 332 2033 or firstname.lastname@example.org.
On receipt of your application we will send out your Welcome Pack which includes Your Gluten Free Life booklet, a Gluten Free Checklist, offers and product information and your Food and Drink Guide.
Is there any advice for people with coeliac disease who are pregnant?
Pregnancy holds no greater risks for women diagnosed with coeliac disease than those without, but it is important you follow a strict gluten free diet and make sure you get a good intake of calcium and iron.
It is also important that people with coeliac disease are followed up regularly, particularly at times of stress, such as pregnancy.
Surely a breadcrumb wouldn’t hurt someone with coeliac disease?
Even very small amounts of gluten can be damaging to people with coeliac disease. Therefore, taking sensible steps to avoid cross contamination with gluten is important.
Can you ‘grow out’ of coeliac disease?
Coeliac disease is a lifelong autoimmune condition and the gluten free diet is the only treatment for it. If gluten is introduced back into the diet at a later date, the immune system will react and the gut lining will become damaged again.
Once you develop coeliac disease, you must avoid gluten for the rest of your life.
What is osteoporosis?
Osteoporosis is a condition where the body's bones become brittle and are more likely to break. People with coeliac disease may have low bone mineral density (BMD), which is what is used to diagnose osteoporosis.