My Journey Through Diagnosis

To celebrate Coeliac Awareness Week and help spread the word, I want to share with you my story. Everyone has their own, some incredibly hard, long-winded jouneys before diagnosis, and some were relatively quick; I would say mine is somewhere in the middle. I hope that by sharing my own experiences, someone might recognise them either in theirself or someone they know and it will help achieve a diagnosis a lot quicker.

 

I first started to really notice my symptoms when I was 16. For the next two years I went through quite a lot of stress for a teenager. My friend was killed by a car, we were in the process of moving to Australia, I was taking my GCSE’s and then my A-Levels, the death of my Aunt tore our family apart and finally my Mum was diagnosed with Breast Cancer. I can pretty much pinpoint this as the start of Coeliac, although I wouldn’t be diagnosed for another 3 years. They say that Coeliac can be brought on by a period of stress and I firmly believe this to be true in my case.

 

When I was 17 my weight rapidly dropped from my healthy 8 1/2 stone (that I had been for most of my teen years) to 7 1/2 stone, causing my periods to stop.  I received the standard questions about anorexia but eventually doctors just put it down to me starting work and snacking regularly rather than eating big meals. I was off school sick at least once per month with something- be it a migrane, cold or sickness bug. When I left school things didn’t improve. I started working as a hotel receptionsist which included shifts and I became constantly tired. I saw the doctor again and was tested for Glandular Fever and Anemia. The latter came back postive, I was prescribed Iron tablets and told to sleep more. Most days went like this: Work, Sleep, Dinner, Sleep, Get up the next day, and so it continued until I was 21. Instead of wanting to go out with my friends and have a good time, I wanted to go home and sleep. I’ve even been known to fall asleep in the pub!

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At 18- too Skinny!

 

Over time I put the weight I had lost back on and just before my diagnosis I weighed almost 10 stone. Then came the bloating, which I just couldn’t shift and some days made me look pregnant. When I’d lost the weight I had to buy new clothes in a size 6- now I began buying them in a size 12. One day I woke up with ulcers along the side of my tongue and all around my lips. I couldn’t eat, I couldn’t drink and by the end of the day I was writing messages instead of talking. An emergency trip to the Doctor and I was prescribed antibiotics and sent on my way with an infection. In November 2009 I woke up with a sickness bug and a rash on my face. I was admitted to hospital with suspected menigitis although eventually diagnosed with Swine Flu (I don’t believe this to be the case as a couple of months later I was ill for a week with something much more swine-flu like).

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At 19- on a night out looking so bloated!

I have to say that not once did I ever put any of these symptoms together. All came at different times and all led me to appointments with different Doctors. I started to just accept them and believe that I was just prone to sickness. The one (and only time) I saw the Nurse Practioner at my surgery she outright told me that there was nothing wrong with me and it was my imagination. She referred me for counselling, citing the tough times I’d gone through between 16 and 18. so eventually, I started to feel that whilst it might not be in my head, it really wasn’t a big deal. In May 2010 I was on holiday in Menorca when I was admitted to hospital with suspected sunstroke and kept in overnight on a drip. When my blood test results came back I was told that I’d actually picked up a viral infection. Again, I didn’t put two and two together.

 

My diagnosis only came about because of my Mum. Having turned down a night out with the girls in favour of my bed, she booked an appointment with the Doctor and came with me, sick of seeing her 20 year acting like an old lady. We saw the head of the surgery and explained my issues. He seemed confused and asked outright ‘What do you want me to do’? Mum came back with ‘Run more tests. It might not be serious but there IS something wrong with my daughter and we need to find out’. So finally after 4 and a half years of feeling ill I was sent for full blood tests. A week later the Doctor phoned me and explained I had tested positive for Coeliac and would be referred to a Gastroenterologist for further tests.

 

Coeliac? What the hell is Coeliac? Isn’t that what babies get? I guess at least I’m definitely not imagining things!
I had literally no idea what Coeliac was- I’d never even heard of it before. I spent the rest of the night researching with Mum and immediately signed up to Coeliac UK. I started off happy as it seemed simple enough and wasn’t too serious (I think I’d been imagining some life-threatening illness) but eventually the full weight of Coeliac was on my shoulders as the realisation of a life-long diet sunk in. It was incredibly scary. My biopsy and offical diagnosis came about a month later and I began my gluten free journey just before my 21st birthday. It was a big struggle at first and my first glutening rendered me to my bed for a couple of days. I focused too much on what I could no longer eat rather than how much better I was feeling. Of course I noticed and it felt good, but the massive impact it had on my life felt was so much easier to focus on that than fact that I was no longer bloated and had more energy.

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Today- Happy, Healthy, Gluten Free

 

Skip forward two and a half years and you meet me as I am today- confident with my diet and a gluten free blogger. It  hasn’t been easy (grumps over salads at the airport and a hissy fit at having to use wholegrain mustard instead of English for my cauliflower cheese included) and I admit there are times I get quite sad at the sight of a crispy baguette or puff pastry, but I cannot for one minute argue with how much better I’m feeling. Since my diagnosis I’ve only had four sick days at work (two for migranes, one for a slip down the stairs, one for a 24 hour bug) and I have so much more energy! I’ve lost the weight and bloating, my skin is better and I sleep so much less. I’ve also been incredibly lucky to have been diagnosed at a time when the gluten free food market is blossoming- companies like Perk!erVenice BakeryCeliaGenius, BFree, Isabel’s, Udi’s and Newburn Bakehouse just make things so much easier for Coeliacs now. Even the catering industry has changed greatly with the introduction of gluten free options in coffee shops (read my review of the new Costa wrap here) and pizza/pasta galore in chain restaurants.

 

My biggest turning point however has to be when I joined twitter in May 2012. The community on there is amazing! If you get glutened there’s people at hand to share their tips with coping, we swap recipes and product reviews, we can share our ideas with the larger companies who always listen and there’s a great spirit for change….a little thing I like to call Coeliac Activism. It’s the support group we all need when no-one else understands and I’m so thankful to my virtual friends for all their help over the last year. With the ideas that I’ve found from them I’ve found a new passion for cooking gluten free. Okay, I may not be one to experiement with different flours until I find the perfect match, but I’ve started to rely less on shop bought products and more on naturally gluten free foods. Just playing with flavours can transform plain quinoa into a fantastic breakfast porridge, or adding Greek Yoghurt to a risotto instead of cheese can make it fantastically healthy and creamy. Going gluten free doesn’t mean the end of the world as I had first thought- it opens doors to a whole new world of eating.

 

I wish I had researched my symptoms and been able to tell the doctor I needed more tests rather than accept and deal with the state of my health, and I wish Coeliac Disease was more commonly mentioned in the press like it is today. If I had known more it might not have taken 5 years for a diagnosis. The one thing I cannot stress enough is listen to your body. If something isn’t right, fight like hell to receive the investigative treatment you deserve. Listen to your gut.

 

www.coeliac.org.uk

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3 thoughts on “My Journey Through Diagnosis

  1. The Free From Fairy

    What a great blog post Kim! You certainly went through the mill and had a really tough time. My daughter was diagnosed just before her third birthday after a year of being very unwell. She had been getting every bug under the sun before that…including meningitis…and the Drs thought she may have something wrong with her immune system! She certainly did…but they didn’t find the problem then. It took a good 18 months after all those tests! Anyway, she is well now. I share her story over on my blog http://www.freefromfairy.com. I really hope we can all do our bit to help raise awareness to others who may be suffering for no reason… Keep up the great work 🙂

    • coeliacdelight

      Thank you so much Vicki! It must have been awful as a parent to watch your daughter go through that, especially at such a young age. It’s ridiculous to think that it can take so long, if only doctors were trained to spot the signs! The community online that we’re a part of is fantastic, I can only hope we all make that difference 🙂

    • coeliacdelight

      Thank you so much! It must have been so much harder for you with her at such a young age. At least I could voice my feelings and issues, but for a 3 year old I can only imagine the struggle you had. Glad to read her story and see she’s doing so much better!

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