Hello everyone, welcome back to Gluten Free Hannah!
For me, being diagnosed with Coeliac Disease was completely unexpected. I am going to talk about the process I went through, the diagnosis, the symptoms and how it all made me feel. I know everyone finds out in different ways, but I thought I’d share how I experienced it. I would love to know how other people found out, so please feel free to leave a comment letting me know if you found out in a similar way to me, or which parts were completely different!
We are now in August and I am still going through the procedure of being officially diagnosed. But let’s rewind three months to the beginning…
It all started in May 2017. I was living in my uni halls in Bristol and it was getting towards the end of term. Lectures were ending and exam season was starting.
The first I noticed was that I was feeling super bloated. My stomach felt twice the size it would normally and it was so uncomfortable, even walking my stomach felt almost painful. I felt hungry so I cooked dinner but when it came to eating it I just couldn’t. I felt so full but so hungry at the same time. To me it felt like severe indigestion, however I couldn’t put my finger on what might have caused it. Not sure what to do I texted my mum and asked her how to relieve indigestion. She sent me off to the shop to get some Rennie’s and see if they made me feel any better.
About 4 days later, I only just started feel more comfortable again. This did concern me a little, because I knew that indigestion doesn’t tend to last for that long, but I was unsure as to what else it could be.
I started to feel better as the next week progressed but then the following weekend I was really quite unwell. I went to the toilet and passed a lot of blood. I was shocked by the amount I saw. Quite panicked I got an emergency doctor’s appointment for that evening, and although the doctor couldn’t diagnose any immediate problem, she suggested that I had a blood test to check there wasn’t an underlying problem.
I had my blood test and then a week later my doctor’s surgery rang me to explain that I need to go in to discuss my results. I could tell something was wrong, I just had no idea what it could possibly be.
The results of my blood test showed that I had a low iron count, as well as showing signs of potential Coeliac Disease. I didn’t fully understand what it meant. I knew the bare basics of being gluten free – no bread, no cakes, no pasta – but that was about as much as I did know. I was referred to see a specialist to have further tests, and given an information sheet on what Coeliac Disease is. I told my parents, who also didn’t really know that much about Coeliac Disease. We spent hours researching and exploring what it actually meant.
From this point, I went into information overload stage. I found that there was a lot of information available about lists of food to avoid, lists of restaurants that have a good selection of gluten free options, and lots of health websites about generic symptoms of Coeliac Disease, but what I wanted was someone’s personal experience. Someone to explain how it made them feel, and that it wasn’t as scary it was all sounding to me. I started focussing on what I could not eat, rather than what I actually could eat. This was a mistake as it made me think very negatively about Coeliac Disease, when although it is a big change to have to make, it is very bearable, it just takes some getting used to.
I started checking the ingredients label of everything I was eating. Some foods had gluten in that I never ever considered would do. Sausages, gravy and sauces thickened with wheat flour. At the time, I was convinced I’d be living on plain chicken breast, rice, potatoes and vegetables for the rest of my life. I’m relieved to say that I could not have been more wrong!
The worst part came after my blood test results. The doctor made it very clear that I should not stop eating gluten as it would interfere with the further tests. In my head, I sort of knew the cause of why I was feeling unwell, however I was not allowed to stop eating gluten, which was massively frustrating for me.
My awareness of all allergies, but especially gluten, was increasing. I’d go food shopping and spend a good half an hour in the free from section, considering what sort of world I was about to step in to, and being pleasantly surprised by the selection available. I was checking restaurant menus and seeing that there was food available. It was going to be alright. I was going to be able to continue my life almost as it had been, with a few small dietary changes.
I had my consultation a few weeks later, at the beginning of June. I didn’t really find anything new out here, I explained what had happened so far and I was then booked in for a biopsy.
This happened at the beginning of July. If you don’t know what a biopsy is, then it’s a thin flexible tube that goes down your throat in to your stomach and then takes samples from your stomach to examine. It is not a very pleasant experience; however, it has to be done! My advice would be to take the sedation if the nurses offer it – I decided against it and really wish I hadn’t!
I am currently waiting for my follow up appointment so that I can find out the results from the biopsy. My appointment is in a few weeks so I don’t have much longer to wait.
It will be interesting to see what the results of my biopsy say. Since being allowed to cut gluten out of my diet, I have noticed a big difference in the way I feel and how my body reacts to eating – I definitely know when I have eaten gluten!
If you’ve read all this way, then thank you! This was a mammoth post but I feel like it needed to be said. Like I said, in all my research, I hadn’t found much about personal experiences through being diagnosed and how it made other people feel. Hopefully this is out there now to provide some of the information I was looking for in the early stages of my new gluten free life.
Please feel free to make any comments, ask questions, share your experience too. I’d love to hear from you!
Also, look out for my next blog post where I discuss and potential link between acne treatment and Coeliac Disease that I would like to share with you.
Until next time