Coeliac disease – my story

Hello everyone and welcome back to My Blurred World.

I hope you’re all doing well.

Today’s post is all about coeliac disease and my experience with it. I haven’t spoken about this topic much on my blog so today I wanted to change that and let you know my story.

I’ll start by talking a little about coeliac disease incase you’re not aware of what it is.

Coeliac disease has become much more common that it was a decade ago, this might be because of new technology, there is much more testing for it these days, and it’s much more common than you’d think.  Coeliac disease is a digestive condition where a person has an adverse reaction to gluten.

I’m going to break this post into categories so it’s hopefully easier for you to follow and understand.

Symptoms

My main symptom before diagnosis was tiredness, I was constantly having tests to see what the cause of my tiredness was but they all came back normal. I also suffered from stomach aches and I wasn’t really growing as I should be for the age I was. Symptoms differ for different people, some have mild symptoms and others have more severe but those were my personal symptoms.

Diagnosis

I finally had a full blood count blood test and one of the tests was for coeliac, the results came back and there was a 9 in 10 chance that I had the disease but it wasn’t certain therefore I had to have a biopsy at Alder Hey hospital in Liverpool. I wasn’t allowed to eat after 7:30 in the morning and wasn’t allowed to drink past 10:00am. If I remember correctly I went for the test at about 1 o’clock so I felt quite ill as I had been without food/drink for a long period of time. I received the results from the hospital about a week later confirming I had the disease. I was 14 years of age when diagnosed with coeliac and was just about to start year 10 at school, I am now 18 so I’ve been living with it for 4 years now.  The diagnosis did come as a bit of a shock to me, I wasn’t sure what to do with the information and to be honest I wasn’t quite sure what the concept of coeliac disease was at that point.

Gluten

As I mentioned previously coeliac disease is an adverse reaction to gluten which is a protein found in three cereals – wheat, barley and rye. Gluten is found in any food containing these three cereals, food such as pasta, bread, cakes, certain type of sauces, breakfast cereals, certain ready meals, I’ve even discovered it is in some yoghurts, chocolate, ice cream and the list goes on. This means that I have to be careful before eating anything that isn’t labelled as gluten-free, this can be difficult for me as I am visually impaired so can’t just look at the ingredients, I would have to use an app on my phone to read the information out to me or ask a member of my family to check for me.  I also have a coeliac uk app which I can use to check the product, it scans the barcode of an item and says if it’s suitable or not which I’ve found to be very useful.

Results

Going on the gluten-free diet didn’t really help me in terms of tiredness (it did to begin with) but I was diagnosed with chronic fatigue syndrome just under a year later which seemed to be the culprit in terms of making me feel tired but coeliac disease did add to that in conjunction with my under active thyroid. I did find that I grew a bit more after going on the gluten free diet which I know sounds a bit odd but it’s the truth and I’ve heard other people say the same. My stomach aches also eased too.

Coping

As I said I was fourteen when first diagnosed so I didn’t really understand what the concept of coeliac was but I did find it difficult to deal with as I felt that I was different to everyone else as I wasn’t allowed to eat the same things as my family/friends. I had to take a lunchbox to school but I didn’t mind that to be honest. As I’ve grown I’ve learned to deal with having to eat gluten-free foods and it’s normal to me now, I don’t mind it. The only thing I find difficult is eating out. I have to research before going out as to what restaurants/cafes offer gluten-free foods, I also have to be careful when I’m going to a friend’s house, I normally have to take my own food with me just to be on the safe side when staying with someone and this isn’t always pleasant. It can be a bit frustrating when going out to eat as I have to check and sometimes double-check to make sure that what I order is gluten-free, this is definitely the worst part about living with coeliac disease. But as I said, I’ve learned to live with it, even though it can be difficult sometimes, it is now my lifestyle and I’m ok with that. There are so many foods available nowadays that is suitable for people who require gluten-free food and I’m sure there will be even more in the future.

Well that’s my story with coeliac disease, I hope you found it interesting. If you have coeliac disease or if you are on a gluten-free diet for other reasons then be sure to let me know how you’re getting on with it and what your thoughts are on it.

If you have any questions regarding coeliac disease then don’t hesitate to ask, I would love to hear from you.

I hope you all have a lovely day/evening, thank you all so much for reading.

Elin x

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11 thoughts on “Coeliac disease – my story

  1. I am so grateful for your blog! Every time I read your post I learn something new. I’m so happy that I’m starting to be aware of these diseases or disabilities. I want to understand them so if anyone is going through them I can help them or at least know what they are going through.

    And lovely post as always! Keep up the amazing posts xx

    Liked by 1 person

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