Coeliac Disease FAQs

Being diagnosed with coeliac disease can be quite daunting, and it’s very likely that you’ll have a lot of questions. But have no fear, my coeliac disease FAQs are here!

While not everyone on a gluten free diet has coeliac disease, it’s very important to be aware of the condition and what it is.

Here I outline common questions about coeliac disease, including what the condition is, how it’s diagnosed and any potential cures.

If you are at all concerned you may have coeliac disease, please speak to your GP and seek professional, medical guidance. 

I’ve also got a separate Gluten Free Diet FAQs page for those who want to learn more about the condition itself.

Got a specific question? Use the Table of Contents below to jump straight to your answer.

What is coeliac disease?

Coeliac disease (or celiac disease in the US) is an autoimmune condition where the body’s immune system attacks the lining of the small intestine when you eat gluten.

This can result in a whole range of symptoms, from classic ‘stomach problems’ like diarrhoea and vomiting to lesser-known issues like nerve problems, anaemia, miscarriages and brittle bones. 

According to the charity Coeliac UK, 1 in 100 people in the UK have coeliac disease but many still remain diagnosed.

There is still a lot to be done in terms of raising awareness, both among the general population and medical practitioners. 

What are the symptoms of coeliac disease?

Coeliac disease has many different symptoms – according to one study there are said to be around 200 reported symptoms.

Common symptoms of coeliac disease can include:

• Unexplained weight loss
• Diarrhoea
• Vomiting
• Wind and Bloating
• Stomach Cramps
• Constipation
• Iron, B12 or Folic Acid Deficiency
• Neurological problems such as number fingers/toes and ataxia
• Recurrent miscarriages
• Stunted growth (in children)
• Extreme tiredness
• Mouth Ulcers
• Problems with tooth enamel

However, this list is by no means exhaustive. And some people will also have ‘silent’ coeliac, where they have no symptoms at all.

It’s important to note though, that the severity of the symptoms is not indicative of the severity of the coeliac disease. It does not work on this scale.

Some people may not get any symptoms but have extensive damage to the villi in their small intestine.

The most important thing is that if you notice anything abnormal, and you believe you should be tested for coeliac disease, you push this with your doctor BEFORE giving up gluten.

How do I get tested for coeliac disease?

If you believe you have coeliac disease it is very important that you get tested before giving up gluten.

This is because at present the only way for an accurate test is to have been eating gluten regularly for at least six weeks beforehand.

To get tested for coeliac disease you will need to speak to your GP. The current process is to have a blood test, followed by an endoscopy biopsy, if needed.

However since the pandemic, in some cases (and particularly those of children) coeliac can be diagnosed by a blood test alone.

The test measures the immune response to gluten – so of course, without gluten, there will be no response and therefore a potentially false negative test.

If you do give up gluten and want to be tested, you will also then have to endure going back to eating gluten and suffering symptoms.

So it is always best to speak to your doctor before making any changes to your diet.

Is there a cure for coeliac disease?

Unfortunately there is no cure for coeliac disease and the only treatment is currently a lifelong, strict gluten free diet.

This means not only avoiding foods which contain gluten, but also being very careful to avoid any cross contamination.

This is because it can only take a tiny amount – less than a crumb of bread – so cause a reaction.

That being said, there are numerous, ongoing medical trials which are looking into the possibility of this. So I do believe one day there may be some form of hope on the horizon.

And of course if there are ever any breakthroughs, you’ll hear about them from me because I’ll be keeping a very close eye on all the research projects!

What do I do if I accidentally eat gluten?

If you accidentally get ‘glutened’ the first thing to do is not panic! Accidents happen no matter how careful you are, and often it’s the result of something out of your control, like eating out or a well-meaning friend who doesn’t understand cross contamination.

While you may feel pretty rotten, don’t beat yourself up about it. There is sadly nothing you can do to stop a reaction if you have coeliac disease – so don’t believe any BS pills which tell you otherwise.

Instead get some rest, take painkillers (if needed), hydrate well and stick to plain foods.

Depending on your symptoms, you may feel like avoiding foods or just eating little and often.

Symptoms of a ‘gluten attack’ can feel different from person-to-person so it’s best to listen to your body and try to look after it until you feel well again.

This can take hours, days or sometimes weeks depending on the person.

How bad is it to ‘cheat’ on a gluten free diet?

If you have coeliac disease there is no cure – the only treatment is a strict gluten free diet. Even a trace amount of gluten can cause a reaction.

Even if you don’t get symptoms – or you may have ‘silent’ coeliac – it does not mean there is no damage to the lining of your small intestine.

It’s very important if you have coeliac disease to not ‘cheat’ on your diet. You may not feel unwell but if you continue to eat gluten you will be causing damage to yourself.

If you do this consistently it can result in serious complications including infertility, osteoporosis and even bowel cancer. 

Having to restrict your diet can feel extremely difficult and daunting but with the right support it does get easier.

Reach out to others in a similar situation, browse my recipes for foods that you miss and join online groups where you can ask for advice and help. 

Other reasons for being gluten free

It is not just people with coeliac disease who have to give up gluten – there are a whole variety of reasons for people going gluten free.

Coeliac disease is an autoimmune condition, not a food allergy or intolerance.

Non Coeliac Gluten Sensitivity is the medical term often dubbed ‘gluten intolerance’.

Often people with NCGS have very similar symptoms to coeliac but there is no damage to the villi in the small intestine and the immune system is not involved.

Irritable Bowel Syndrome (IBS) also causes similar digestive symptoms to coeliac disease and is also controlled through diet.

In fact, when there was less awareness of coeliac, a lot of people were misdiagnosed with IBS first. Now clinical guidelines state if a doctor suspects IBS, they must test for coeliac disease first to rule this out.

A wheat allergy is a reaction to the proteins found in wheat and usually happens within seconds or minutes of eating. 

There are many other conditions which affect the gut that result in people giving up gluten – and others often give it up for lifestyle reasons such as following a paleo or keto diet.

Whatever the reasons, those with conditions like coeliac disease must be extremely careful of avoiding cross contamination rather than just opting for a ‘gluten free’ food option.

Is coeliac disease hereditary?

Coeliac disease can be hereditary – although a lot of people with coeliac (myself included!) are the only person in their family who has it.

If you are diagnosed with coeliac disease, first degree relatives (including mother and father, brothers and sisters and your children) can be tested too.

They can be tested even if they don’t have symptoms, so it’s always important to make your family aware of this so they can decide for themselves. Some people don’t have symptoms and may have coeliac disease without even knowing.

Can I travel with coeliac disease?

I strongly believe that you should NEVER let your coeliac disease hold you back from anything – and that includes seeing the world!

I have visited many countries since my diagnosis and never had an issue. There are some great places that are very coeliac-inclusive.

You will have to plan your trip carefully and do your research in advance. Also remember to notify you travel insurers that you have coeliac – most will not charge any extra for this.

But with the help of other coeliacs who have visited before you and published their finds online the world really is your oyster.

My travel guides and asking for other people’s experiences of destinations on my Facebook group are good places to start!

Got any questions about coeliac disease?

I really hope these Coeliac Disease FAQs have helped, but I’m always happy to answer more questions!

I’ll update this post as new topics crop up so do bookmark it so you can keep checking back.

If you have any questions yourself, please do post them in the comments and I’ll answer them.

You can also join my super friendly Facebook group and ask away in there too!