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The story of how Danielle was diagnosed with coeliac disease.

Date: Friday 8th May 2015

DanielleMy 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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Glutafin Customer

29/05/2015

Dear Danielle, Your story is an almost duplicate of what I went through! I am a lot older that you, and was not diagnosed with Coeliac Disease & D.H. until I was 60. (Having been told by my doctor that I had IBS 25 years previously!). I have never felt better, but I just wanted to say that I am very pleased that you were diagnosed so young, and hope you have a fit & healthy life from now on. Very best wishes, Brenda

Glutafin Customer

28/05/2015

Thank you. I self diagnosed wheat intolerance about 3 years ago (at 38 years old, after having had symptoms all my life, and the diagnosis of IBS) but had not associated the rash with it. My GP was ok for me to self diagnose and, doing no tests, just told me to try not eating wheat. I no longer have the endless nights of pain and the rash has subsided dramatically with now just the odd 1 or 2 spots. Thanks for pointing out the link between the two. Glad you are feeling better.

Glutafin Customer

15/05/2015

Thank you for your story Danielle. I am going through something very similar at the moment! I have lived with constant pain, suffering and feeling generally unwell for over 10 years now. I have been dismissed by several doctors and told that I must have IBS, but I have never been tested for anything else. I have learnt to put a face on things so no one really realises how much I am suffering and have put up and shut up for so long.

When my partner moved in with me last year, he said he saw how much I really suffered and pushed me so hard to return to the doctor.

I eventually did and am she has been brilliant! She referred me for CBT for my anxiety and needle phobia, referred me to a dietician and is doing several tests. I have managed to have a blood test, but as I hadnt been eating gluten, am doing so for the next four weeks so I can be tested for Celiac disease. The symptoms are awful but if it means I can get an answer, then it will be worth it. I am also having an endoscopy in July.

I feel very isolated at the moment as nobody really realises all the numerous effects that this disease can have on the body - and the mind. I am tired all the time, had painful sinuses, suffer daily with stomach pains, mood swing and am currently suffering from depression as it has all got too much for me to cope with.

Thank you for telling your story and for reminding me that I am not alone. I hope you are feeling well and happy x

Lydia Barham

11/05/2015

Well written Dannielle. Someone finally listened to you and you had severe symptoms. Not everyone has the same symptoms. My daughter had almost no diarrhoea . Just didn't feel well and had swolen tummy and some tummy pains. People should get tested if only to eliminate Coeliac disease.

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