What is Life Like With Coeliac Disease?

In December 2017, I was diagnosed with Coeliac Disease, which meant cutting out all gluten from my diet.

It came as quite a shock at the time as I didn’t have the typical stomach problems (often diarrhoea, nausea and bloating) which tend to come with coeliac disease.

While doing blood tests to try to get to the bottom of some of my pain issues, my doctor discovered that I had several nutritional deficiencies. She needed to find out why, so had to do more blood tests. One gave a positive reading for coeliac disease.

However, the blood test alone isn’t enough to diagnose. She said that I would need to have an endoscopy and that I shouldn’t go gluten-free until that was carried out. Gluten must be eaten for at least six weeks prior to the endoscopy to give an accurate result.

I worried about the endoscopy, but it was a relatively painless and fast procedure for me. A tube with a camera went down my throat, into my stomach and then some samples of my stomach lining were taken. A couple of weeks later, it was confirmed that I did have coeliac disease and I would have to cut out all gluten from my diet.

I very quickly had to learn that it was going to be a life-long condition. But I always like to look for positives, and there was one. A big one. Coeliac disease is a manageable condition. No drugs, no treatment – just a change in diet.

What is coeliac disease?

Healthy and damaged villi

Coeliac disease is an autoimmune condition. The immune system reacts when gluten is eaten. The stomach is lined with villi which are like little fingers that reach out and grab the nutrients from food. They help the body to absorb those nutrients. But when a person has coeliac disease, the villi become badly damaged when gluten is eaten. The villi become flattened and unable to absorb the nutrients, resulting in people being ill and becoming deficient in vitamins and minerals.

Silent Coeliac

I was a ‘silent coeliac’, which meant that I had no stomach symptoms to make a doctor consider coeliac sooner. But this had meant that I had unknowingly been living with it and suffering from malabsorption issues for a long time. Quite a few things fell into place after my diagnosis. Some of my health issues such as nerve pain, fatigue and osteoporosis are possibly related to that.

Since cutting out gluten, I’m no longer a silent coeliac. If I accidentally eat gluten, I know very quickly. My dietician explained that my villi were recovering and enjoying their new gluten free environment. Now, if they get the slightest hint of gluten, they like to let me know they’re not happy.

Which foods contain gluten? 

The gluten culprits are wheat, barley and rye, and they can be found in many foods. Label reading is imperative.

I had always eaten gluten as I’d had no reason not to. I had never had any reason to check food labels.

And suddenly, I had to educate myself about what I could and couldn’t eat.

“Cut out gluten,” sounds easy. It sounds simple.

Unfortunately, it’s not.

It actually means not being able to eat a crumb of bread. Not even a tiny grain of flour. It means that I need to check every label on food. I can’t eat something which says ‘may contain traces of gluten’, because even a trace of it could make me ill.

Grocery shopping was daunting at first. Reading glasses had to be at the ready to read all the labels. Then there was disappointment if something had to be put back on the shelf. Gluten appears in more food that people realise. Even my favourite Cadbury’s Dairy Milk chocolate has a gluten warning.

So many foods need to be avoided. The obvious are breads, pasta, cakes and biscuits. Less obvious are some soups, sauces, crisps and even some drinks. Food from the cold counter or delicatessen are often problematic. Even if they don’t contain gluten, they might be sliced using a knife or slicing machine which had previously been used on something which does. Or the server might have just picked up some gluten containing food, then contaminated the ‘safe’ food.

When restaurants and cafés have anything gluten free on their menus, they tend to have maybe two or three options at most. But at the bottom of the menu, there is normally a disclaimer to tell customers that although it’s gluten free, they cannot guarantee that there’s no cross-contamination. I can understand why they need to do this. The cross-contamination issue is difficult enough in my own kitchen.

Cross contamination is a serious issue. A crumb, one single crumb, from my husband’s toast can make me ill. Even using the same butter knife is enough to ‘gluten’ me. I have my own toaster in the kitchen, my own butter and my own jam. Food in the fridge has labels with my name so there’s no confusion.

That probably sounds like an overreaction…but it’s not. That’s the deal with coeliac disease.

Which foods do not contain gluten?

There is plenty of food which coeliacs can eat. Food like fresh meat, eggs, fruit and vegetables are naturally gluten-free. Lots of “normal” foods are safe – you just need to check the labels to be sure. Supermarkets do have a reasonable amount of gluten-free bread, pasta and flour. They even have biscuits and cakes and many of them are actually enjoyable.

There was, and still is, elation when I discover that something is gluten-free – especially when it involves chocolate. I think I punched the air in Tesco a few days ago when I saw that tins of Quality Street were safe.

No cure and no treatment for coeliac disease

There is no cure and no medical treatment for coeliac disease.

However, the damage done to the villi can be repaired simply by eating no gluten. Once repaired, it will start absorbing those nutrients again.

Coeliac disease is a serious autoimmune condition. If the diet isn’t changed, conditions such as chronic fatigue, neuropathy, osteoporosis and stomach cancer can develop.

Coeliac disease sounds daunting. Overwhelming. In the beginning, it was. But now, it’s become a way of life.

Help and awareness for coeliac disease

To anyone newly diagnosed, I’d suggest, first of all, take some deep breaths. Then start learning. The Coeliac UK site is a great place to begin. Once you’ve had an official diagnosis after an endoscopy, don’t put off going gluten-free. The sooner you do, the sooner those little villi can start repairing.

Coeliac Awareness Week in the UK is the 13th – 19th of May.

I’d be really grateful if you could share my post to help spread awareness.

Do you have coeliac disease? What was the hardest part for you? Or have you been newly diagnosed? What’s your biggest fear? 
Please leave a comment below.

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Thank you for reading.