My Coeliac Diagnosis Story


This week is Coeliac UK Awareness Week, raising awareness of the condition to try and get more people diagnosed as left untreated Coeliac Disease can have serious effects. The symptoms are many and varied and can be tested with a blood test. To find out more visit the Coeliac UK website.

I am going to do my part by sharing my diagnosis story, as it has been really interesting to read others.

Click below to read more…

My Coeliac Story

I was diagnosed when I was 16, I’m 24 now. My brother was diagnosed when he was 4, and I was 2, so I always knew about it and how to live with it. There is no cure, the only treatment is to only eat food that does not contain any gluten (a protein found in wheat, barley and rye).

I probably never appreciated how hard it was for him until I experienced it myself. I found it quite hard to cope with at the start, I not only had to immediately stop eating anything containing gluten (2 weeks before Christmas!) but I had to comprehend the idea of living this way for my entire life. If I eat any gluten, I will be seriously ill. It affects all coeliacs in different ways outwardly, but basically the body decides that gluten is harmful and the immune system starts to attack itself, breaking down the walls of the intestines, which in turn does not allow the intestines to absorb nutrients properly.

I began to be ill when I was 10 years old. My parents didn’t know what to do, my symptoms were completely different from my brother’s. I suffered constant headaches, catching any illness going round, mouth ulcers, weight gain, arthritis and joint pain, anxiety and depression. I put it all down to being a teenager! When I was 16, it all got a lot worse, during my GCSE’s I suffered from tonsillitis, directly followed by pharyngitis. Constant headaches turned into almost constant migraines and I found it hard to concentrate on or find interest in anything. At my mums request the doctors tested me for Coeliac Disease, amongst many other things. My doctor said that the result was almost 100% positive and what with my brother already having it they felt there was no need for an endoscopy. (I feel it is recommended that everyone has one of these but to have one you have to be eating gluten and I am not prepared to eat it again just to have a ‘proper’ diagnosis. According to my medical records I am a diagnosed Coeliac).

I remember one day, a few months after being diagnosed with Coeliac disease, I suddenly realised I felt genuinely healthy and happy, something I hadn’t felt for a long time.

Since being diagnosed (and especially since my brother was diagnosed in 1991!) things have come a long way. I still have the compulsion to take my own food everywhere or just not eat at all when out, and being very mistrustful of restaurants or any food people give me without personally seeing the ingredients, but honestly I can now go out and usually find a sandwich to eat from chain cafe’s, no more just snacking on chocolate bars and fruit because they are the only things available! Most restaurants have gluten free options including many that I would never have been able to eat anything at before, such as the Italian and Pizza restaurants. Supermarket Free From sections are getting larger and I hope will continue to expand in size, but hopefully shrink in price?! So I think there’s hope!

Good times!


(Note: This was originally posted during Awareness week at my craft blog Josie Makes before I decided to create this blog)


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