My Journey with Coeliac Disease

Due to it being Coeliac Awareness Week, I wanted to write a blog post in hope that it’ll help or give support to anybody reading. It’s not easy to share personal experiences, especially when they’re related to health – which I deem to be one of the most important things in life. So whether you’re new to hearing about ‘Coeliac Disease’, struggling to come to terms with being diagnosed, or simply needing someone to relate to, this might provide you with a valuable insight into the journey of somebody who was diagnosed three years ago now.

Remember: it’s important to listen to your body.


Pre-diagnosis

Looking back on my childhood, I was a healthy, happy and inquisitive child who grew fond of food from a very young age. I used to live with my mum and grandparents up until the age of about eight. Memories come back to me of running down the road after primary school and munching down a bowl of spaghetti bolognese and garlic bread. Not even aware of the word ‘gluten’ at this stage.

Time passed by and my first couple of years of secondary school were also positive. Until about 2008, when I’d find myself feeling nauseous or physically being sick and having extreme fatigue. Bouts of bloating like a balloon or losing weight (although having a pretty balanced diet). My classic phrase to my family and friends was ‘I just don’t feel right’. My attendance at school started dropping, spending countless days in bed. Extreme confusion ran through my mind. What could be wrong with me? We all tend to panic when ill, it’s a natural instinct. Mixed emotions were always running through me, with some very low days. I pushed through school and my busy social life, ensuring I always had a smile on my face no matter what (my nickname used to be Cheshire Cat).

Catching every bug and cold under the sun wasn’t fun as you can imagine. It also didn’t make my diagnosis a quick one as it seemed at the time like ‘everything was wrong with me’. Lying in bed for a whole week straight constantly throwing up and not eating at all lead me to visiting hospital, they said it was down to food poisoning at McDonalds. Looking back now, I reckon it was my body screaming at me saying PLEASE NO MORE GLUTEN.

One of my main hobbies at the time was going to music festivals or gigs. I remember starting to feel unwell when travelling on the train and tube, feeling sick, sweating out and even blacking out or fainting at a few of them. Shortly after, a doctor informed me that I had severe anemia (iron deficiency) and immediately started taking supplements to boost my levels. I started to feel better in terms of energy – but something still wasn’t right. 


Diagnosis

During my last year at university, I said enough is enough. A trip to the doctors was necessary (again) and my frustration during these many years of illness must’ve got the better of me because I didn’t know the person sitting in the room. She was forceful, confident and adamant to get some answers without being turned away for the zillionth time. A detailed yet focused blood test was carried out. It came back positive for Coeliac and I was placed on a waiting list for an endoscopy. This is the final stage of being diagnosed by taking a biopsy and testing for gluten. The results confirmed the answer I was awaiting, I had Coeliac Disease. Since May 2015, I have been gluten free. It took me six years to get diagnosed – it’s not simple at all, but perseverance is key.

My initial reaction was:

If you are reading this and aren’t sure whether to get investigated, the list of general symptoms can be found here on the Glutafin website. 


Today

Three years later, here I am writing this post with almost NO Coeliac symptoms day-to-day.

Here I am on holiday in Portugal, loving my life due to the most incredible gluten free experience I’ve had so far whilst being abroad. Read all about it here within my Gluten Free Portugal Guide. 

I’m able to enjoy meals at some amazing, knowledgeable restaurants such as Station 26 and Niche, which are 100% gluten free. Most of the meals eaten out, you would never even consider it being gluten free. Times have changed after speaking to ‘older’ Coeliacs. Options like this gluten free breaded halloumi and pesto burger with wedges just wouldn’t have been possible until recent years! We’re extremely lucky aren’t we?

Instantly feeling at ease is something all Coeliacs wish for and the experiences at both restaurants have achieved this. You can read a full review of Station 26 here. And my review of Niche here. 

But it hasn’t been easy and there are some days where I may have been contaminated somehow, shown through stomach cramps and feeling sick. I’ve also been diagnosed with Osteopenia (beginning stages of Osteoporosis). This is easily under control by eating lots of dairy (yay cheese!) and simply taking two Vitamin D/Calcium tablets every morning. It’s a constant learning journey along the way. Not just for me, but for everyone that’s close to me too. It means a lot to me living in my household where everybody else eats gluten, but feeling so safe. Many precautions have been taken to eliminate my symptoms as much as possible. Such as separate chopping boards, a dedicated gluten free cupboard and ensuring no cross-contamination when preparing meals. Feel free to comment below if you’d like more information on other ways to stay safe whilst having Coeliac Disease.

Finally, one of the best things to happen out of all of this is creating my blog and running my Instagram. I’ve helped numerous people already with various foodie-related issues. But my little gluten free blogger community have honestly helped more than I could’ve ever imagined. It’s so important to have a strong network of people who understand what you’ve been through and the implications of the illness. As well as sharing the most delicious food photos and valuable information EVER!

If you do have Coeliac Disease, you may find my ‘8 Reactions Most Coeliacs Can Relate To…’ quite entertaining and relatable.

My final feeling about Coeliac Disease:

Thank you all so much for taking your time to read this – it’s taken ages to write but it’s worth it if it provides help or reassurance for just one person.

My social media links can be found below to find out even more about my gluten free life!

Hannah x

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2 Comments

  1. Esther Hawkins
    May 16, 2018 / 7:49 pm

    What a great insight into your journey and inspiring to others. You came through it all even though it can be a debilating desease. Well done really proud of you!!

    • Hannah Hawkins
      Author
      May 17, 2018 / 9:27 am

      Thank you nana! I’m proud of myself 🙂
      Couldn’t have done it all without you!

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