Five Facts About Coeliac Disease *

1. Coeliac disease is not a food allergy or an intolerance, but an autoimmune disease caused by a reaction to gluten.

2. The average length of time taken for someone to be diagnosed with the disease from the onset of symptoms is a staggering 13 years.

3. There is no cure for the condition; the only treatment is a strict gluten free diet for life.

4. Studies show that if a family member has the condition, there is a 1 in 10 chance of a close relative developing the disease.

5. Gluten is one of the allergens that manufacturers are required by law to list on food labels.

When were you diagnosed?

So, I was diagnosed officially at the end of 2017, and I’ve been gluten free since the beginning of 2018. I had been dealing with some ongoing issues before my diagnosis, so I kind of suspected that I was coeliac for a while before then.

I feel like disease does feel like a strong word to describe it; I would describe my condition as an autoimmune disorder. Instead of stating that I suffer from coeliac disease I tend to just explain that I’m a coeliac as it sounds a bit less intense.

What is it?

Basically, Coeliac disease is an autoimmune disorder, meaning that whenever I eat gluten, my body’s immune system starts to attack itself. No one knows entirely what the cause is but yeah, if I consume more than 20 parts per million of gluten (equivalent to about a crumbs worth of bread), then my immune system will start to go haywire, by attacking my gastrointestinal system.

We all have lots of tiny, microscopic hairs in the lining of our intestines that help the body to soak up nutrients more efficiently. But when you’re a coeliac your body starts to attack and ultimately destroy those hairs which basically means you can’t absorb anything.

That’s actually how a lot of people end up being diagnosed as they become deficient in some vitamins or minerals, or they can start losing weight rapidly – it can be an early indication in someone’s childhood if they aren’t growing well or if they’re quite late on in entering puberty.

That being said, if the symptoms are recognised and the condition is caught early enough, provided that you stick to a gluten free diet; all of the damage is reversible. My digestive system works exactly as it should do, and I’m absolutely fine; just as long as I don’t have any gluten.

If you did continue to eat gluten, (even though I’m not really sure why you would), then you would become more susceptible of encountering other digestive complications, such as IBS, and can even put you at high risk of developing stomach and bowel cancer.

Is coeliac disease easily managed?

It is something that I am always aware of, so a big part of managing it is having to plan your meals in advance. I can’t just not bring lunch with me into work and assume that I’ll find something to eat that’s gluten-free.

Obviously, there are some people who are gluten intolerant which is a bit different to being a coeliac as their bodies can manage small quantities of gluten, whereas a coeliac can’t have more than 20 parts per million, hence why cross-contamination has to be treated with extreme caution.

One of the main challenges is that gluten plays an important role in most people’s staple diets, including: bread, pasta, cereal, cakes, biscuits… the list goes on and on. So, although there are alternatives out there, it can still be a challenge to manage what foods I can have to fuel my body.

Eating out is perhaps one of the biggest challenges. If I want to go out for dinner somewhere, then it can be quite difficult to find somewhere that has decent gluten free options. For instance, I can’t just walk through town and decide to pop in to a restaurant if I feel hungry, which is a shame as you lose a bit of spontaneity in that aspect.

The other issue is that gluten free alternatives can be quite expensive as half a loaf of gluten free bread amounts to about £3.00, compared to the average cost of a regular loaf which is around £1.20 - more than double! Cross contamination is the leading cause of this as gluten free alternatives can’t even be made in the same factory as food that does contain it, which inflates the price.

It means that as an example, I can’t eat Dairy Milk Chocolate Bars, even though they’re gluten free, because they’re made in a factory with other food that contains it. However, I am able to eat Dairy Milk Chocolate Buttons, as they are made in separate factories.

Do you have any advice for anybody who has just been diagnosed with coeliac disease?

It's not as bad as it sounds. I didn’t find it quite as intimidating as I did a lot of home cooking before hand anyway, and I already knew a bit the condition before being diagnosed.

I think it can be quite a lot to take in for someone when they’re told they can’t have any pasta, bread or doughnuts again, so it can make people quite sad. I won’t lie it does suck a bit sometimes - sometimes I think to myself that I would do anything to go and devour a freshly fried doughnut.

But it really isn’t as daunting as it first seems. All it takes it a little bit of extra care and research for you to be able to find great alternatives to basically everything.

My friends went out of their way to make me feel better by putting in their own research by discovering delicious gluten free dishes and restaurants, for which I was very appreciative. So yeah, to round it off I just think it would just be nice for everyone to try and know a bit more about it in the future.

I think the last thing I want to say is that it would be amazing if everyone was made a bit more aware of it and tried to educate themselves on coeliac disease; purely because it affects one in every 100 people, so you're almost certainly going to know someone who has it.

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