Coeliac Disease Is Not A Fad - And It's A Lot More Intense Than Having A Tummy Ache After A Bowl Of Pasta

From being told to ‘pick the flour out of a cake' to 'a crumb won't kill you', people are shockingly unaware of what living with this condition actually means

There’s a lot of facts and figures out there about how many people in the UK are gluten free. There’s statistics such as ‘one in ten people in the UK avoid gluten’ and over ‘8.5 million people in the UK don’t eat gluten’ flying around on the internet but there’s only one figure to do with being gluten free you actually need to know and that’s that one in every 100 people suffer with coeliac disease.

Wait, what’s the difference? What’s coeliac disease? You’ve got questions haven’t you?

Considering one in every hundred of us in the UK are likely to suffer with this disease, the lack of knowledge about it is truly baffling - but I can tell you from first hand experience that the one thing you need to understand about coeliac disease is that it is, under no uncertain terms, a fad.

I’ve heard it all since being diagnosed: “Oh, I tried being gluten free once, didn’t like it”, “ooh, I heard gluten-free diets are really good for weight loss”, “so, how do you get rid of that disease then?”, “I’ve got that too but sometimes I just eat gluten and deal with the pain”.

Anyone that utters any of the above statements is usually not speaking from a malicious place, just from a lack of understanding about what coeliac disease really is, so allow me to explain.

Coeliac disease is not the same as gluten intolerance. It isn’t an allergy, there’s no anaphylactic shocks, it is an auto-immune disease. According to Coeliac UK, one of the most trusted sources of information on the disease: “Coeliac disease is a serious illness where the body’s immune system attacks it’s own tissues when you eat gluten”.

It sounds dramatic doesn’t it? Sounds a lot more intense than getting a bit of tummy ache after eating a bowl of pasta - coeliac disease is worlds apart from being gluten intolerant.

The body can be severely damaged by undiagnosed and unmanaged coeliac disease. Coeliac UK explain how the disease is “caused by a reaction of the immune system to gluten – a protein found in wheat, barley and rye. When someone with Coeliac disease eats gluten, their immune system reacts by damaging the lining of the small intestine.”

So, what does coeliac disease feel like? Well, everyone’s experiences differ and this is why diagnosis is so difficult because the severity of people’s symptoms varies and for those who only suffer with mild symptoms, they can mimic those of a gluten intolerance.

The disease can show itself through discomfort and physical symptoms such as vomiting and diarrhoea after consuming gluten, as well as bloating and severe stomach cramps, but it can also include fainting, fatigue, headaches and migraines, joint pain and a whole host of other symptoms - so it’s not surprising it’s often confused with a lot of other conditions when you just look at the external effects.

One of the biggest differences between coeliac disease and any of other gluten-related conditions is that as a sufferer of the disease, gluten causes lasting damage to the body which will then affect the absorption of other nutrients and vitamins, whereas gluten sensitivity can mimic similar symptoms but no permanent internal damage will occur.

I think the above pretty much summarises the differences between our disease and the severity of the condition, but seriously highlights that in no way is this disease a fad. As a sufferer myself, I’ve endured the tedious comments and inconsiderate treatment associated with having coeliac disease first-hand.

Due to the fact that as a society we’ve pretty much shunned gluten from our diets as something that is ‘indigestible’, ‘bad for bloating’ or simply just not good for you, when someone has diagnosed coeliac disease, they’re often tarred with the same brush as people who makes a misinformed decision to illuminate gluten from their diet for no reason.

I’ve been asked by friends if I can ‘pick the flour out of a cake and eat some’, I’ve been told a ‘crumb won’t kill me’ and served plates of gluten-free food in large chain restaurants that have been contaminated with gluten (I’m talking a bowl of gluten free pasta with a stray piece of normal spaghetti mixed in).

It’s difficult to explain to people who don’t understand how different coeliac disease is to not agreeing with gluten or avoiding it out of choice and that often leaves those of us who suffer with the condition in a vulnerable and risky position when eating out, even when choosing restaurants with gluten free menus and promises of understanding the disease.

I wanted to write this article for the same reason I write my blog and share on my Instagram page, I wanted to highlight not just the trials and tribulations of being a diagnosed coeliac and a gluten-free teen but to educate people about the condition and stand hand in hand with fellow sufferers to let them know that when they’re going through the rough patches due to people’s lack of knowledge, they’re not alone.

If someone tells you they can’t eat gluten, don’t jump to conclusions that they’re trying to shift a few quick pounds, ask the question, ‘do you have coeliac disease?’. If they say no, then you can ask their reasons why they avoid gluten but if they say yes, take it seriously, understand how much you could cause someone pain and discomfort by not making their disease a priority.

I’m on a mission to educate as many people as possible that this disease is not a fad, so after so long of just saying “I have coeliac disease but it’s not a big deal”, I’ve changed the approach. It is a big deal and if you need to know about my condition then you’re getting the all the details because my health does matter and if you have coeliac disease, yours does too.

How It Feels is a weekly blogs series which aims to shine a light on people’s stories, covering subjects where voices are rarely heard. If you want to get involved, please email ukblogteam@huffpost.come