Frequently Asked Questions
FREQUENTLY ASKED QUSTIONS
Most frequently asked questions and answers
Coeliac disease is an autoimmune disease that mainly affects the gut or digestive system. People with coeliac disease have an abnormal reaction to gluten. Gluten is a protein found in many foods. When people with coeliac disease eat gluten, it causes damage to the lining of their gut. It can also affect other parts of the body including bones, skin and the nervous system.
The damage that gluten causes to the gut means that it is harder for people with coeliac disease to absorb nutrients from their food. Cutting out gluten completely helps the gut to heal and to go back to normal.
Dermatitis Herpetiformis is how coeliac disease can show up on the skin. Dermatitis Herpetiformis is an extremely itchy skin rash that comes up as blisters. However, as it is very itchy, people usually scratch it and it looks like lots of scabs on the skin. It can often look like chicken pox but it is not contagious. The rash usually occurs on the outsides of the elbows, knees or buttocks and is usually found on both sides – that is, on both arms or both legs. However, the rash can appear on any part of the body. About 10% of people with coeliac disease will have dermatitis herpetiformis. As dermatitis herpetiformis is part of coeliac disease, the treatment for dermatitis herpetiformis is a strict gluten free diet. It can take up to two years on the diet for the rash to fully clear. Many people with Dermatitis Herpetiformis will take a medicine called Dapsone, which helps to manage the rash and especially the itch. Dermatitis Herpetiformis is diagnosed with a skin biopsy.
It is estimated that 1 in 100 people in Ireland have coeliac disease. However, more recent studies from other countries suggest that it may be closer to 1 in every 75 people. If someone has a close family member with coeliac disease (e.g. a sister, brother, parent or child) then the chance of having it is 1 in 10.
Many people with coeliac disease do not know that they have it. We think that around two thirds of people with coeliac disease in Ireland do not know that they have it.
The symptoms of coeliac disease can be very different between one person and the next. The most common symptoms are in the gut and can include diarrhoea, constipation, bloating and abdominal/tummy pain. Sometimes people think that they have irritable bowel syndrome.
Lots of people with coeliac disease will also have fatigue, iron or other nutrient deficiencies and excess wind/flatulence. However, coeliac disease can affect many different parts of the body. So some people can have severe headaches, mouth ulcers, poor enamel on teeth or short stature. Symptoms can vary depending on someone’s age and not everyone will have the same symptoms. Some people with coeliac disease may have no symptoms are only found to be coeliac when they are being tested for something else.
Babies with coeliac disease will not show symptoms of coeliac disease until they have started eating gluten – usually around six months of age. If a baby does have coeliac disease they may have diarrhoea or loose, pale stools; vomiting, anaemia, be very cranky and difficult to soothe; have a bloated belly and lethargy/low energy. Babies and young children may also have wasted buttocks.
The most important thing to remember about testing for coeliac disease is that people MUST be eating gluten at the time of the test. If someone has cut out gluten before the test, then the tests will come back negative even if the person does have coeliac disease.
Never cut out gluten “just to see” if someone might have coeliac disease. Always test first. Gluten and wheat can cause problems for some people who do not have coeliac disease so feeling better without gluten doesn’t mean that the person does have coeliac disease. It is important to have a medical diagnosis as there is rarely a need for someone who does not have coeliac disease to follow a strict gluten free diet.
If someone has cut out gluten already, then they must eat gluten again for six weeks before being tested.
Testing begins with a blood test that your GP can carry out. The blood test is a screening test. This means that it tells you that you might have coeliac disease. The blood test alone does not diagnose coeliac disease. Coeliac disease is diagnosed with a biopsy.
The gold standard of testing for coeliac disease is a biopsy. This is where a tiny piece of the upper gut (small intestine) is removed (this is painless) and checked under a microscope. People who are being tested for coeliac disease will have a scope to collect the biopsy. A scope is a flexible instrument that goes through the mouth and stomach and into the gut. It has a camera so the doctor can see the gut and it can also remove a tiny part of the gut to be checked.
In some children a blood test can be used to diagnose coeliac disease without a biopsy. However, this must be done by a gastroenterologist who is experienced in managing coeliac disease in children. This can happen where a child has a very high result on their coeliac blood test along with very severe symptoms of coeliac disease. However, for adults, a biopsy is always required.
It is best to continue to eat gluten until someone has been fully tested for coeliac disease. However if someone has already cut out gluten, then they do need to eat at least 2 slices of ordinary bread everyday for six weeks before being tested. This can be difficult as people often feel very unwell when they go back onto gluten.
Gluten is the trigger for all of the problems of coeliac disease – tummy pain, osteoporosis, bloating, diarrhoea, headaches etc. When someone with coeliac disease cuts out all gluten, they feel much better and their symptoms resolve. This includes the damage to the gut and the substance in the blood that is checked with the blood test.
This means that when the doctor goes to check if the person has coeliac disease, there is nothing to see – all the tests come back as normal. This can mean a long delay before someone is correctly diagnosed with coeliac disease. It also means that someone can miss out on getting all of the information they need to treat and manage their coeliac disease correctly.
At the moment, there is no cure for coeliac disease. The only treatment is a strict gluten free diet.
No. Coeliac disease is an auto-immune disease triggered by an abnormal reaction to gluten. A wheat allergy is where someone is allergic to proteins in wheat. Both groups do need to avoid wheat but people with coeliac disease also need to avoid barley and rye as they contain gluten.
Yes. Coeliac Disease is a genetic disease, which means that it often “runs in” families. If a close family member (sister, brother, parent, or child) has coeliac disease, then there is a one in ten chance that other family members will also have coeliac disease.
In past, coeliac disease was seen as a disease that only affected children. However, we now know that people do not “grow out” of coeliac disease and it can affect people at any age.
When someone with coeliac disease eats gluten, it triggers the full auto-immune response in the body. However, not everyone feels this in the same way. Some people will feel very sick soon after eating gluten and may vomit or have diarrhea. This can last for several days. Other people with coeliac disease do not feel sick straightway but if they continue to eat gluten, they can see damage coming to the lining of their gut all over again.
It is important to remember that someone who gets a mild reaction, or no immediate reaction, to eating gluten still has full coeliac disease. There is no such thing as being “slightly” coeliac. Everyone who is diagnosed with coeliac disease needs to avoid all gluten, all the time, regardless of how they feel when they eat it.
Some people with coeliac disease do not immediately feel sick when they eat gluten – this can be as many as 60% of people with coeliac disease. However, the damage that coeliac disease can cause in the body still happens. People who have coeliac disease and do not follow a gluten free diet can have a higher risk of osteoporosis, problems with fertility, including more miscarriages, nerve damage, and poor enamel on teeth among others. It is important for long-term health that someone who has been diagnosed with coeliac disease follows a strict gluten free diet all the time.
Unfortunately even a tiny amount of gluten can trigger the full auto-immune reaction of coeliac disease. People with coeliac disease will have a reaction if as little as 20 “millionths” of their food has gluten. This is often written as 20 parts per million or 20ppm.
If a parent has coeliac disease then there is a one in ten chance of their child developing coeliac disease. However, this should not affect weaning and babies should be weaned according to guidance by the HSE. Studies looking at when gluten is introduced to babies who are at a higher risk of developing coeliac disease do not seem to show any effect of delaying gluten. Recent guidelines state that gluten can be introduced to these babies between 4 and 12 months (i.e. from 17 weeks).
To join the Coeliac Society, you can go to our website at www.staging8.coeliac.ie and click on the “join us” button. You can also email us at firstname.lastname@example.org or call us on 01 8721471.