Living with... Coeliac Disease

Living with coeliac disease

This is part 1 of a ‘living with…’ series. Coeliac disease is something that’s becoming more and more common as more diagnoses are made, with the NHS stating 1 in 100 people have the condition. Luckily I was diagnosed when i was 7, so I've been able to adapt my lifestyle from a pretty early age.

What is coeliac disease?
Coeliac disease is an autoimmune condition (not to be confused with an allergy or intolerance- but thank you so much to the media who have encouraged such conflation...) as a reaction to gluten. When eating gluten, the body's defence against infection mistakenly attacks healthy tissue due to it thinking gluten is a threat to the body. Normally it damages the small bowel (intestines) disrupting the body’s ability to absorb nutrients from food causing a variety of problems.

coeliac disease villi
Gluten destroying my villi since 1991. Source
My mum noticed very early on some of the effects of coeliac disease had had on me. I was visibly malnourished and looked like a child on a African charity advert with the very visible symptoms of malnutrition- bloated stomach whilst the rest of my body looked like it was wasting away. I was constantly covered in bruises due to a lack of vitamin K and was a very anxious and tired child. Furthermore, I would have stomach cramps and vomit on a regular basis and felt generally unwell all the time. Whilst these were my main symptoms that something wasn't right, the NHS list the following symptoms as key to diagnoses:
  • Diarrhoea
  • Bloating
  • Abdominal pain
  • Weight loss
  • Fatigue
  • Anemia 
I feel like one of the main aims of this post is to raise awareness of the disease. Whilst my mum knew something was wrong and took me to the doctors, they quickly dismissed anything was wrong and instead blamed it on the vegetarian diet I had been brought up on (I was vegetarian from birth). Obviously this was quite upsetting for my mum as she was always very wary and conscious to give me a well-balanced diet. Further down the line, my symptoms prevailed and my mum decided to get a second opinion. After having my blood tests analysed they came back inconclusive which meant having an biopsy via endoscopy. As a child patient the endoscopy was really easy. I was asleep when they did it and it was basically a breeze until the nurses offered me toast after i'd woken up again... oh the irony. Many years later I had an endoscopy for another condition I have without being put to sleep and just under a local anesthetic, so I can say I've lived to tell the tale both asleep and awake. Whilst this wasn't the most pleasant experience, it was okay. I feel this part is really important- whilst times have changed and doctors are much more wary about coeliac disease, if you believe there is something not right, please keep seeking help until you are satisfied.

Lifestyle Change
After confirming I had coeliac disease, I have ever since been on a gluten-free diet. Whilst it was a struggle at first finding out what I could and couldn't eat, bearing in mind i'm also a vegetarian, it has become something of a second nature to me. There are so many hidden ingredients that contain gluten in processed foods that the easiest way to keep gluten-free is to eat clean and healthy.

The worst thing really is the dismissive approach many people have to it. Firstly this is not an intolerance, it is a autoimmune disease. And yes, it does matter that the recipe has 'only a few drops of soy sauce in'. Some studies have shown that 1/145th of a slice of bread can seriously affect a coeliac. Same goes for cross-contamination. The media have really latched onto the gluten-free fad for people trying to lose weight or who have a slight intolerance, and this has proved a big problem as people lack an understanding of what being gluten-free entails for coeliacs- it means 100% eliminating gluten. And what it means when someone eats gluten can be completely detrimental to both their physical and mental health for a prolonged period of time. I noticed my anxiety and fatigue were significantly increased if my diet came into contact with gluten, and i felt generally unwell for a prolonged period of time. And this is just me- some people have it a hell of a lot worse.

The unwanted attention is also an annoyance. To be honest, I've learnt to just be self-sufficient in being able to provide food for myself at dinner parties or to just stick to plain old salads when i go out to eat. When friends or family say "well where can YOU eat?", it makes me feel like a complete spanner. I'd quite frankly order a bowl of vegetables whilst everyone was tucking into pizza than have this question thrown at me every time we go out to eat. I dislike attention at the best of times!

I had coeliac disease before it became a trend
Gluten Free Food
I’m actually not a huge fan of the gluten-free food you can buy in supermarkets. The same goes for vegetarian versions of meat. They're often very processed and have a lot of preservatives in (whilst also costing an arm and a leg) which is such a shame. I’m planning on writing a post on my favourite gluten-free foods you can buy, but I mainly stick with basic things like pasta, and flours to make pizza bases etc. Pasta is probably one of the few things that I don’t mind buying from the gluten free section as it's not too expensive and it's useful when i need a quick meal. Generally though I prefer to stick with naturally gluten free food, or just stick with vegetable alternatives. One thing I am looking forward to getting though is the Udi's Mince Pies, they are amazing!

But wait, so you cant eat gluten OR meat… what DO you eat?!
The initial reaction to everyone I tell about my dietary requirements, which can sometimes be annoying. Gluten isn't in everything, and neither is meat! There’s so many things out there you can eat, and without gluten or meat they're often healthier for you- so whilst it may be annoying, it does have its benefits. There are many grains that are gluten free with quinoa and brown rice being two of my favourites. Restaurants are generally a lot more clued in than they ever have been with gluten free items often being circled on menus, and some restaurants even offer gluten free pasta, pizza etc. I will endeavor about making a post about the best restaurants I have been to that cater for coeliacs. 

Do you or anyone you know have coeliac disease? Do you have any foods that you have to avoid?

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