We are coming to the end of a really successful Coeliac Awareness Week and I have read so many great blogs from other Coeliacs this week that it encouraged me to write my own diagnosis story down. It's not easy writing your diagnosis story, I mean, where do you begin? But I'm just grateful to everyone who has been brave and come forward this week and shared their personal experiences. Thank you! I hope by reading my story you may find out a little bit more about Coeliac Disease and how it has affected me.
Having read a few of the other blogs out there it soon made me realise how lucky I was with my relatively short journey to diagnosis - 9 months in total from the onset of symptoms to actually starting the gluten-free diet. I was horrified to read how it can take some sufferers years to get a diagnosis of Coeliac Disease and I can't even begin to imagine what a struggle that must be. In that respect I do feel very fortunate that mine was a short illness but obviously at the time, it was a pretty awful period in my life. It just goes to show how complicated a condition Coeliac Disease is and how its symptoms can take many different forms and can often get mistaken for other illnesses. That's why it's so important to educate GPs and Pharmacists to spot the symptoms sooner and make that diagnosis, which is what Coeliac Awareness Week has been all about. If you want to read more about the work of Coeliac UK please click here.
I first became 'ill' with symptoms in May 2012 just before my brother's wedding, although I had thought I was lactose intolerant for years before then. Looking back now, whenever I had bloating after meals, problems going to the loo or an upset stomach which I thought was due to eating dairy, it was probably the Coeliac Disease and I didn't even know it.
Although those stomach-related symptoms were there, after a while I didn't really pay much attention to them as I'd had them for years and they seemed to stay under control most of the time if I didn't eat dairy products (although never went away completely). Milk and cream were the worse culprits for me so I just tended to avoid them and use Lactofree substitutes. I never thought it could be anything else other than lactose intolerance, although I never asked to be tested for it.
The symptoms that affected me the most were more neurological in nature and were not your 'typical' Coeliac symptoms such as stomach cramps, vomiting, diarrhoea. In May last year I developed a really painful sore throat, much worse than the typical sore throat you might get with tonsillitis. It was difficult to eat/swallow and I also had really badly swollen and painful glands in my neck (my neck felt and looked huge!), together with extreme tiredness and exhaustion. I was tired every single day no matter how much sleep I had and some days it felt like I wasn't fully awake and walking around in a dream-like state. I went to my GP who at first thought I had some sort of lymph node infection (due to the visible swelling in my neck) although she wasn't entirely sure. I was prescribed a course of antibiotics and sent away. 7 days later there was no change in my symptoms and I had finished my antibiotics so I went back to my doctor who then prescribed me a further course of antibiotics, thinking that this was just a stubborn infection that needed double the dose. During this second course of antibiotics my sore throat was getting worse and I had even begun to wake up in the middle of the night because of the pain. It was the worst sore throat I had ever had, and I had it day after day without any relief - no amount of strepsils, throat sprays, hot drinks, ice lollies helped and believe me I tried everything! The fatigue was also getting much worse and I found myself coming home from work, eating my tea and then falling asleep on the sofa most nights before 8pm. It was so bad sometimes I could have quite easily fallen asleep at my desk at work in the afternoons too.
Naturally, people I knew were worried about me, I mean, I must have looked terrible, and although they were only showing they cared, I was constantly asked "are you feeling better yet?" and then to see the concern and disbelief on people's faces when I told them I wasn't better only added to the distress and depression I found myself experiencing as a result of being so ill and my own doctor not even knowing what was wrong with me. Now, I don't blame my doctor at all for not being able to diagnose me, as the symptoms I presented with weren't symptoms that you would associate initially with Coeliac Disease and at the time pointed to something else. I know my doctor only did what she thought best at the time.
For a couple of months I kept visiting my GP and I just seemed to go from one course of antibiotics to the next - I think I had about 7 or 8 courses in total! During this time I also got a chest infection which meant even more antibiotics and time off work. On one of my many trips to my GP she decided to send me for some blood tests to screen me for a whole host of things including thyroid problems and glandular fever (but annoyingly not Coeliac Disease!). I think she was convinced it was glandular fever at this point (as was I) due to my swollen glands, sore throat and tiredness. She also wanted me to have an ultrasound scan of my neck to check for any problems with my thyroid and a chest x-ray to rule out anything more sinister than that. The blood tests came back clear for everything including glandular fever and my ultrasound scan was fine - no thyroid problems. The chest x-ray was also clear. By this time my GP was rather puzzled - she even called me "a medical mystery".
Next I was sent to the hospital to see a consultant in the 'Infectious Diseases' department - this in itself terrified me! Did I have some tropical disease that no one had heard of - where was Dr House when you needed him? (Little did I know that infectious diseases and tropical diseases were two completely different things!) I honestly thought I had something horrific and immediately feared the worst - I mean this was the department that treated people with HIV, T.B and M.E.
My consultant though was absolutely lovely - she explained everything to me and really took the time to listen. It was at this appointment that M.E. (also known as Chronic Fatigue Syndrome) was first mentioned to me - a lifelong, sometimes debilitating disease - and it was possible that I might have it. The only way to diagnose the condition however is to rule practically everything else out so I was sent for more in depth blood tests - I was tested for everything under the sun including HIV, T.B, liver and kidney function and, wait for it, dietary conditions! She told me that if it was M.E. all the tests would come back negative and only then could she make the diagnosis of M.E. I was also sent to an ENT specialist just to check that it wasn't a problem with my throat. I had a camera pushed up my nose and down in to my throat (very unpleasant), they had a good look around and concluded that my throat was absolutely fine, not even red or inflamed! Then why was it still hurting me so much?!
When I went back to get my blood test results at the hospital I walked through the door, sat down and the consultant told me that she had found something very interesting with my blood test results - it was Coeliac Disease! I think even she was surprised that anything had shown up on the tests. I had tested very strongly for Coeliac Disease and I was slightly anaemic and my liver function was also slightly low - both of which are consistent with people who have Coeliac Disease. I was already aware of what Coeliac Disease was as my Grandad (on my Dad's side) got diagnosed with it in his 60's. I knew it was something to do with gluten and diet but I didn't really know much else about it. I remember asking the consultant "are you sure it is Coeliac Disease" and she replying "absolutely yes", my symptoms all made sense.
So that was that. I then had my endoscopy and biopsies were taken which confirmed conclusively that I was a Coeliac. I had to wait about 6 weeks though before I had the endoscopy and had to continue eating gluten knowing that it was hurting me. This was quite tough psychologically because although I knew what was causing me to be so ill I had no control over it and couldn't stop it until I'd had the endoscopy because it would have affected the test results. As it was Christmas time I therefore decided to scoff my face with every gluten-containing food I could before I knew I wouldn't be able to. I've now been gluten-free since 4th February 2013 and although I am not completely 100% yet I have noticed a big change in my symptoms and I have so much more energy.
The support I have received from fellow gluten-free bloggers, friends and family has been amazing and has really helped me through the past few months. I'm not saying that changing your diet is an easy thing to do because it's not, but there is absolutely no way I am going back on the gluten and back to how I felt 12 months ago it's just not worth it. People have already started to notice a big change in me physically - no longer do people tell me "Emma you look awful" or "Emma you look so exhausted you might collapse" and I can now quite easily stay up until 10 or 11pm without falling asleep in front of the TV. Bonus!
One thing I will say is that since my diagnosis of Coeliac Disease I have lost quite a lot of weight - I've gone down a whole dress size to a size 6 which has worried me a little. It also means finding something to wear at the moment is a complete nightmare and has knocked my confidence. I'm seriously considering throwing all my clothes away and starting again with a whole new wardrobe but obviously the cost of doing so would be ridiculous.
Since my diagnosis I also asked to be officially tested for lactose intolerance and so I had the hydrogen breath test a couple of months ago but this came back all clear - I'm not lactose intolerant. Despite this I'm still having problems with milk and dairy so I've decided to carry on avoiding dairy as well as gluten for a while. I read a tweet from the GlutenFreeGuerrillas recently that newly-diagnosed Coeliacs should refrain from eating dairy for at least 6-12 months as the villi in the small intestine need time to heal and Coeliacs can continue to have problems digesting lactose for up to 12 months until the gut has healed itself. I'm going to give it a try and see what happens. I'll do anything I can to speed up my recovery.
So that's my story. If you've got to the bottom of this page I applaud you, thanks for taking the time to read my story. I still consider myself to be a newbie Coeliac and I certainly don't know everything these is to know about the condition yet but I'm learning more and more each day. I would say to anyone who has just been diagnosed to be patient. No one ever told me this. A complete recovery does take time and although some people feel fine after a few weeks for others it takes much longer. In fact it takes up to 12 months for the gut to heal itself fully. It can get frustrating at times, I will admit, I just want to be better right now but I'm confident that I'm on the right track now and I'm really looking forward to feeling like myself again very soon.
Thanks for reading and if you have suffered a similar experience to me I'd love to hear from you.
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