With any medical condition, there is always a common interest as to when and how it was first discovered and in particular the symptoms that may accompany the condition. Coeliac disease is no exception, so thought it would be good to share with you my diagnosis story!
In 2003 I went to see my GP as I had this annoying crack on the side of my mouth that wouldn’t heal. On bad days my lips also shed their skin (attractive!!) and no amount of lip balm/Vaseline solved the problem.
After my GP tried out medicated cream with no success he ran some blood tests. The results showed my iron levels were a little low and I was prescribed an iron supplement. Unfortunately, this didn’t fix things, so more bloods were taken. A week or so later my GP gave me a call to let me know that a blood test for coeliac disease had come back positive (neither I or my husband had heard of coeliac). He stressed at this stage it was important to remain on a normal diet, as I would require an endoscopy to confirm coeliac disease. Removing gluten before an endoscopy test for coeliac will start the healing process, and will prevent you from getting an accurate test result.
It was a couple of months before I had the endoscopy and did as my GP instructed, and maintained my normal diet, making the most of eating whatever I wanted without any boundaries – doughnuts, Chinese banquets, etc. – it was great!! If gluten had to remain for now, I was not going to do it by halves. I was extremely lucky that I did not have upset tummy symptoms at this time. I appreciate it’s a much harder process when you feel unwell.
Although an endoscopy is not pleasant I found it to be quick, and not at all painful. Fortunately for me, I didn’t have to wait long to have my diagnosis confirmed, as the moment I sat up the gastroenterologist confirmed I was coeliac.
I remember walking out of the hospital thinking ‘I’ve got this covered’, I’m a trained chef, with lots of catering experience and love my food, I shouldn’t have a problem managing my new gluten free diet. But a few days later reality hit, and I realised it was going to be harder than I first thought. Luckily for me, a family friend who had been diagnosed for a long time came around laden with gluten free recipes, bread and details of companies to contact to try out specialist gf products. It was a whole new world and slowly I was getting to grips with it. However, she did, unfortunately, point out that I could no longer drink the lager that I had been enjoying throughout her visit – thank goodness I have now discovered some great gluten free ones instead!!
I think the realisation of the importance of my gluten free diet was at my first appointment with a dietician. Until then I was under the impression it was occasionally OK to eat gluten – I was completely wrong about this. The dietician stressed, for my gluten free diet to be effective it had to followed for life. She also explained that as I did not react with tummy upsets etc. I had to be extra careful to make sure I was not unknowingly still eating gluten.
As I’ve learned more about coeliac disease over the years it has made me determined to stick to my diet to ensure I dont jeopardize my health. My body now plays its own part in this too, as if on the rare occasion I have mistakenly eaten gluten it knows it’s ‘the enemy’ and I am sick within a very short time.
I’m so grateful to my GP who took it upon himself to test me for coeliac all those years ago. He threw me a lifeline and has prevented me from being affected by more serious health problems associated with undiagnosed coeliac disease. The least I can do is stick to my gluten free diet!
And yes, adapting to a gluten free diet can be difficult for some people, but personally, I’m constantly blown away as to how much food is now available for coeliacs – both naturally and specialist gluten free products. As a coeliac, your diet does need to be strict, but never restrictive. I promise!!