The Road To Diagnosis- Part 2

So I was ill, I was tired and I was pretty sure this wasnt normal.
I booked an appointment at the GP. As soon as I walked in she wasnt interested in what I had to say, I told her I was tired, I’d wake up a lot at night, id sleep 12 hours but wake tired. My joints ached I had bad back ache, the headaches, the bloating the stabbing belly cramps… I told her the whole shabang.
She told me I was tired because I was over worked, I hadn’t been at work for 4 months by this point. My bad back was my bed, my joints aching my height! And the belly cramps obviously IBS. Okay… so maybe I did have IBS that made sense, so I asked what tests they do for that. Genuinely she turned to me and said ‘What is it you want me to do today? What do you expect?’

WHAT!? I expected was some help, someone to give me advise. I blatantly wasnt going to get it from this lady! It’s a shame my previous doctor had retired she was much friendlier! She told me she’d run blood tests but it was pointless because ‘your bloods in 2012 where fine!’

I had to book another appointment for the blood test the following week. I felt awful, I felt like it was obviously in my head and I was fine and everyone felt like this. I nearly didn’t turn up for those blood tests, The morning of the tests I felt awful, I went in the hope it would prove something was wrong.

Within a week they called me-
‘the doctor would like to see you with regards to your blood tests’

Wow… okay.. they never call you back unless they’ve found something. So I thought this will be her confirming the IBS then. I had to wait another week to see the GP. It was a different GP, the surgery was busy… my appointment ended up being late. Eventually I was called in
“hi what can I do for you?’
‘ummm you called me in… my blood results?’
‘oh….’
So this doctor spent 5 minutes reading my blood results, she asked if my belly cramps where still there, I said yes they’ve got worse, I’m really tired, the cramps are bad in the morning and at night.

‘your blood results came back positive for coeliac’

I had no idea what this was, what the hell is coeliac? She had no idea either! She printed me off 2 pages from google… she read it briefly told me not to worry and that I couldn’t give up gluten for life because what would I live on.
In hindsight what she said is ridiculous! Tell a coeliac to continue to eat gluten for life! I went home, googled the whole thing and immediately bought two books, both extremely helpful and highly recommended for any newly diagnosed coeliac.

Coeliac Books

I also joined http://www.coeliac.org.uk who are a dedicated charity and publish a directory once a year with all the foods in supermarkets that are safe to eat, refered to some as “The Bible”. Mine is well used on shopping trips and handbag sized!

The Coeliac Bible

 

The Gp had told me I would be refered to a gastroenterologist for further tests to confirm the diagnosis. I read online and in books that I needed to continue eating gluten for this time… I was ill and the summer season for our shop was fast approaching. How long was this going to take? I rang the hospital.. 36 weeks! That was january 2015!! People had babies in less time! That was only to see the gastroenterologist it would then need another appointment for the tests! I couldn’t work a season in this state!

After much deliberation… I decided to go private, for the sake of our business I had to get this sorted. I had an appointment within 3 weeks! I saw the gastroenterologist, he was lovely he explained a few things and checked all my symptoms. He booked me in for an endoscopy in 2 weeks. I tought I was fine with this untill I saw an episode of embarrassing bodies the night before and suddenly I was terrified!!

For anyone worried about the endoscopy, don’t be. The nurses and doctors are lovely, someone will hold your hand. It’s not pleasant, they do give you a spray that tastes like fish and banana’s it’s true…. and it’s  best to be sedated but it’s worth it and over within minutes.

I heard the gastroenterologist tell the nurse ‘can you see the villi? awful.. flat as a pancake’ I was relived! I knew that flat villi meant one thing – I had coeliac. He could see it. No more waiting. It was done.

Once I’d come round properly he told me it was evident, they’d send the biopsies away but all could be seen, stop eating gluten immediately.

I have and I’ve not looked back! I went through 2 weeks of massive energy! Then suddenly huge headaches.. I had an appointment with the gastro for the results –

‘defiantly coeliac and one of the worse I’ve seen for quiet sometime’

He thought I’d had it was at least 15 years. He said I’d have never made it to the appointment on a 36 week waiting list, I’d have ended up in hospital way before then. The headaches where my body going cold turkey if you like, I’d eaten pasta 4 times a week and cereals everyday now nothing, I had withdrawal symptoms. they passed.

It angers me that no one had thought to test before, I’m anger at the original doctor you doubted that something was even wrong and felt she had to give me a blood test to shut me up.

I’m proud of all the research I’ve done and the information I’ve discovered myself and things I’m still finding out every day.

I’m currently waiting for my dietician appointment but today I got my first gluten-free foods on prescription. My cupboards are bursting with foods. I’m eating so much more healthy, my husband had been amazing and supportive.

Glutafin Pescription

I’m even toying with the idea of changing the cafe to entirely gluten-free for next season, but first I must master the baking!

Life doesn’t end when you become gluten-free. A new journey begins.

I toast to recover, health and the future! Lets go!

P.S the doctor who said there would be nothing to eat was wrong.. I’ve never eaten so well! This blog will prove it!

 

 

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2 thoughts on “The Road To Diagnosis- Part 2

  1. I’m so glad you got to see a GI! And, at least your physician saw the coeliac in the blood test, although telling a coeliac to eat gluten is ridiculous. It was so great to read your story! Thank you so much for sharing!! And, I agree there’s TONS to eat with coeliac disease, I can’t wait to keep following your kitchen adventures. 😀

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