Sarah Keogh Registered Dietician
April 2024
When you think about coeliac disease you tend to think about gut problems. Bloating, diarrhoea, stomach pain and lots of discomfort. The traditional view of coeliac disease was that it happened to children (who grew out of it) and was all about weight loss and really sick tummies. But we now know that coeliac disease can affect much more than just your gut.
Migraines, fatigue, nerve damage and mouth ulcers are all now recognized as signs that someone should be tested for coeliac disease. In recent years, fertility has also been recognized as something that is also affected by coeliac disease. We know that men and women with undiagnosed coeliac disease are more likely to experience problems with fertility compared to people without coeliac disease.
These problems can include more difficulty starting a pregnancy. Women with undiagnosed and untreated coeliac disease are at a higher risk of having a miscarriage and can have repeated miscarriages. Babies born to women with coeliac disease may also be a lower birth weight or have other problems. Sadly, having undiagnosed coeliac disease increases the risk of having a stillborn baby.
The good news is that once men and women with coeliac disease are diagnosed and are following a strict gluten-free diet, their fertility goes back to normal.
How can coeliac disease affect fertility?
There are several ways that untreated coeliac disease can affect how easy it is for someone to become pregnant or to have a healthy baby:
- Shorter fertile lifespan – girls with coeliac disease who are undiagnosed or who do not follow a gluten free diet can start their periods later than girls without coeliac disease. In fact, coeliac disease is something to rule out if a girl is late starting her periods. This is also true for boys who have delayed puberty. Women with undiagnosed coeliac disease are also more likely to go into menopause earlier than women without coeliac disease. This shortens the overall “fertile” lifespan for women, leaving them less time to become pregnant.
- Nutrient Deficiencies
In people with coeliac disease, gluten causes damage to the lining of the gut. This damage makes it much harder for the gut to absorb nutrients including B vitamins, selenium, zinc and iron. Minerals like zinc and selenium are essential early on in pregnancy to help the developing baby to grow. Iron helps to carry oxygen to the placenta and on to the baby. Folic acid is needed to help prevent neural tube defects like spina bifida. When someone follows a strict gluten-free diet, then their body can absorb the nutrients that they need. This is why it is so important for women who are coeliac to continue to follow a strict gluten-free diet during pregnancy.
- Immune problems
Coeliac disease is an autoimmune disease. This means that the body attacks itself. In the case of coeliac disease, the body makes a chemical called an “antibody” which attacks and damages the lining of the gut when someone with coeliac disease eats gluten. A very similar antibody, also triggered by eating gluten, may cause damage to the developing baby or placenta at a very early stage of the pregnancy. This may explain why women with untreated coeliac disease are more likely to have a miscarriage than women with treated coeliac disease or women who are not coeliac. More research is needed in this area.
What can you do to help fertility in women with coeliac disease?
The most important thing to do is to make sure that you are following a strict gluten free diet. Many people with coeliac disease have never seen a dietitian for advice. If you have never seen a dietitian or if it has been a few years since you were last seen, do ask your GP to refer you to your local HSE dietitian. The Coeliac Society has a specialist dietitian clinic where you can see a CORU Registered dietitian. Make sure you do see a CORU registered dietitian as they are the only nutrition experts in Ireland who are qualified to treat coeliac disease and it is important that you get the right advice at this stage.
Along with following a strict gluten-free diet you may need some additional supplements. Although all women who are thinking about having a baby should take 400mcg of folic acid everyday, women with coeliac disease may sometimes need more. It is important to get your blood folate levels checked as you may need up to 5000mcg of folic acid per day. This is only available on prescription so do talk to your GP and Dietitian about whether or not you need the higher dose.
People with coeliac disease can have difficulty absorbing all of the calcium that they need so it is important to make sure you are eating enough foods that are rich in calcium during your pregnancy. Milk, cheese and yoghurt are all good sources. Calcium-fortified plant milks and fortified tofu are useful sources of calcium. You will also find calcium in tinned salmon and sardines. Although there is calcium in green vegetables, it is very difficult to eat enough of these to get all of the calcium that you need (you would need around 5 bags of rocket a day…). Do talk to your dietitian about calcium in your diet.
I am not coeliac but I am struggling with fertility – what can I do?
Problems with fertility can have lots of causes so it may not be coeliac disease. However, if you have been struggling with fertility it is worth talking to your GP about having a coeliac test. 1.7 in in 100 people in Ireland are coeliac but many are never diagnosed. Do not just cut out gluten “to see”. It is really important to be tested for coeliac disease before you cut out gluten. Although the traditional symptoms of coeliac disease are bloating, diarrhoea and weight loss, many people do not have these symptoms. Depression, migraine, osteoporosis, mouth ulcers, and problems with fertility can all be symptoms of coeliac disease. You may also have constipation, abdominal pain and excess gas. Some people have no clear no symptoms. Remember that coeliac disease does run in families so you have a 1 in 10 chance of being coeliac if a close relative has already been diagnosed.
How do you test for coeliac disease?
Your GP can carry out a simple blood test. If this test is positive your GP will refer you to a gastroenterologist (special gut doctor) for a biopsy. You need to have the biopsy to be diagnosed with coeliac disease: the blood test alone is not enough. It is very, very important that you continue to eat gluten until you have your biopsy. If you cut out some or all gluten before you have your test, then it will come back as negative even if you do have coeliac disease.
For advice and support or to make an appointment to see our dietitian, contact the Coeliac Society of Ireland at info@coeliac.ie or go to www.coeliac.ie.
