Date: Friday 8th May 2015
My earliest memories of symptoms go back to when I was at school. I went to my doctor on various occasions about pain/cramping in my abdomen, diarrhoea and generally feeling unwell. I was told I had IBS. I didn't put the two together but I had this really painful red blistering rash- particularly on my fingers and elbows that would sometimes get so bad I couldn't wear anything with short sleeves.
Years (and years) went by, going to my doctor now and again in despair only to be told it must be IBS brought on by the stress of my degree-which I believed. It was only when I finished the educational chapter of my life and started working that I noticed how much I had been putting up with. There was a crescendo in my symptoms, I didn't like to go anywhere far away from home and had cramping, nausea and severe diarrhoea every day for months. I just remember thinking "I can't live like this anymore".
I booked an appointment with a new doctor and told him all about what had been going on. I was sent for TTG blood tests and they came back elevated. I was then referred for a Gastroscopy and was told to keep eating gluten until the procedure. I went for my Gastroscopy in late Jan, which really frightened me as I have had a severe phobia of vomiting since I was a child (this is hard for me to admit as I know it is irrational). I really do believe that if I can do it with my phobia, anyone can.
I received a letter from my consultant just over a month later with my diagnosis of Coeliac Disease (the rash is called Dermatitis Herpetiformis). I cried as I read the letter. It's weird but when you find out what's wrong with you, all these memories come flooding back of times you have suffered and just put up with how you felt. I just thought it would all come back as normal, I guess I was in denial as it had been so long.
Anyway, that was the end of February so I have had a couple of months to get my head around it all. I was then referred to a dietitian who told me about gluten free companies, reference books etc.
I think the most important thing for me has been learning to stand up for myself when I tell people. Some do make judgements, but I have found that those people don’t actually know what it is. One of the best responses I have heard so far is, "That's cool-doesn't Iron Man have coeliac disease??"
I can’t recommend enough that people get tested if they suspect they may have symptoms like mine. I can’t believe how different I feel now, it’s amazing. If you are living with undiagnosed coeliac disease, it is holding you back, trust me.
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