Getting Diagnosed with Ceoliac Disease: My Story

Updated: May 14

Some of my followers on social media might have heard me talking about my recent diagnosis of Coeliac disease. I was thinking today how I'd like to raise awareness of Coeliac and googled its awareness week (for freelancing plugs!) and it turns out it's this week!

I'm quite new to being diagnosed and going gluten-free but I thought I'd share my experience so far.

A few years ago, I began to feel extremely tired. I felt ‘like sludge’. That’s how I described it. I just felt wiped out, drained, and on my worst days, barely able to move. It was horrible. I thought it was because I was stressed with work or emotionally overwhelmed because of recent life stresses but eventually those situations settled down and the sludgy feeling remained. So I tried other things in an effort to get to the root of the problem.

I went vegan in the summer of 2017, before my symptoms began. I thought maybe I was malnourished so last year, I began eating fish. I had a bit of dairy too just to see if it changed anything for me, but I still felt terrible. In the end, I started taking all kinds of vitamins. I would google 'supplements for energy'. I was taking 15 vitamins a day, but nothing worked.

I was starting to get really frustrated. I knew there was something wrong with me. I knew it wasn’t normal to feel wiped out all the time and as well as feeling physically exhausted, I was starting to feel low emotionally. In the end, I contacted my doctor.

I don't often go to the doctor and when I do, I often feel rushed and just skim over my issues. For me to actually speak to a doctor without really knowing what the hell was wrong felt odd to me. I think I had more confidence in making the appointment because it was a phone consultation rather than in-person, because of Covid (thanks pandemic!). My doctor turned out to be very understanding and immediately suggested a range of blood tests. He said his wife had Lupus and he thought it might be that.

Initially, my blood tests came back as normal and I felt a bit deflated. However, a week later, I got an email from my doctor saying that my Coeliac antibody blood test had come back late from the lab and was “significantly abnormal”, meaning I have Coeliac disease.

Coeliac disease is an autoimmune disorder that means your body basically malfunctions when you consume gluten. We have villi in our small intestine which absorb nutrients in food. They’re like the fibres on a plush rug and have a large surface area. But when you have coeliac disease, your small intestine shuts down from gluten consumption and your villi are damaged, meaning you cannot absorb nutrients. That plush rug with the long fibres becomes a flat trodden-on carpet barely able to absorb anything.

Because I had undiagnosed Coeliac disease for years, I was malnourished and that’s why I felt so terrible. Serotonin is also processed in the small intestine and if yours is damaged, you cannot produce serotonin properly, making you prone to depression and anxiety. I had been feeling low and tried various things : St John’s Wort, CBD Oil, even therapy and self-help. It never occurred to me that the root of my low mood could be physical: a problem with my small intestine.

I’m still getting to grips with my diagnosis. I’m still learning about Coeliac disease and have only recently transitioned to a gluten-free diet. Coeliac disease is a good disease to have in the sense that it doesn’t require surgery or medication, but a life-long transition to a gluten-free diet is required. I thought going gluten-free would be easy, but it has been a little tough emotionally.

As I mentioned, I went vegan in 2017 so I already cut out a ton of food. I’ve now had to take my diet to a whole new level of restrictiveness. I find being gluten-free at home relatively easy as there are loads of gluten-free products available from Tesco (the 'Free From' range is amazing). I’ve easily substituted bread, cake, biscuits and pasta, etc, with gluten-free alternatives. However, it is a bit frustrating when you’re out and about. Lots of things that I used to do are now no longer possible, such as getting food from McDonald’s drive-through on a long journey, buying a croissant from AMT to have with my coffee, grabbing a sandwich from Boots. Ordering takeaway is much harder. I can’t order my old favourites as they’re not gluten-free and even if some restaurants say they cater to people with allergies, ordering still makes me tense. People with Coeliac disease are so sensitive to gluten that even if food is prepared in the same areas as gluten food has been prepared, it can lead to an autoimmune reaction.

I’ve taken to bringing gluten-free snacks with me when I’m out, like nuts and gluten-free pretzels. I know ordering in restaurants or going to someone’s house for dinner will never be the same. Adjusting to the lifestyle changes is a bit frustrating, but the benefits in terms of feeling healthier make it worth it. My energy levels are already up and my mood is significantly better. I’m beginning to feel like the old me again before these problems started to take hold.

My skin is also much better. My cheeks had been red and inflamed when I was eating gluten. It had started to really bother me and I had previously insisted my doctor gave me cream for rosacea even though he said he didn’t think it was rosacea. It turns out he was right. My skin issue was part of my body’s reaction to gluten as now that I’m gluten-free, it has gone.

I’m so glad that after years of feeling sad and defeated about my symptoms, I finally went to the doctor, even if at the time, my problem felt vague. I thought he would just tell me I was stressed and tired and send me on my way, but he took my issues seriously. Now, I feel a lot better and like a new chapter of my life has opened up.

If you have symptoms like mine, it’s well worth getting tested!

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