Gluten Free By The Sea

Steph Campbell becomes the third coeliac to share her coeliac diagnosis story with Gluten Free by the Sea Readers to help raise awareness for Gut Feeling week.  Can I just take this opportunity to thank Carrie, Becca and Steph for sharing such honest accounts with us all.  I know it takes a lot of guts to put your story out there for everyone to see and a huge well done for being so brave.  Over to Steph:

The Scottish Coeliac – My Story

As an unconfirmed/suspected Coeliac, I have been in awe of the gluten-free community and the honesty of the stories I have encountered during Coeliac Awareness Week. It will have taken a massive amount of courage to open up and tell strangers about the journey but I’m hoping that by us all doing so someone, somewhere, might just make that all important decision to contact their GP.

I’ve found it difficult to pinpoint exactly when I realised I had what seemed to be digestive issues. As a teenager I was diagnosed with anaemia which was presumed to be due to heavy periods – not unusual for teenage girls and I thought nothing of it at the time. I was also prone to recurring headaches, tonsillitis, dreadful colds and crippling bouts of nausea. Like many other people, who now know gluten is their problem, putting up with these symptoms became “normal” for me.

In my early twenties I started to have more obvious tummy trouble, albeit rather mild at this stage. The odd tummy upset here and there which was always put down to having eaten something dodgy. There was one occasion that involved a bad Chinese takeaway…and I do mean bad! So bad that I haven’t eaten Chinese food since, not even gluten-free alternatives. It wasn’t something that was happening on a regular basis so, again, I didn’t really pay too much attention. Any bloating I had was put down to eating too much, having even developed a “food baby” and looking 4 or 5 months pregnant.

The turning point for me came in 2011 having just turned 23. I had been offered a job as a Marketing Executive in the line of work I had studied my butt off for. It was nearly the time to make the move from my native Scotland to Cornwall when at work one day I didn’t feel right straight after lunch. I had crippling stomach pains, but not ones I had experienced before. I was sweating and was white as a sheet. My boss was concerned and sent me home. I presumed it was “something I ate”. ‘What did you eat?’ I hear you ask. The answer? Tuna on rye bread; RYE BREAD! I went straight to bed and woke an hour later to literally run to the bathroom. It was bad. Seeing blood in the toilet, although not a lot, was enough to shock me into action. I made an appointment with my local GP for the next day. I’d lived away from home for the last four years whilst at uni and meant I was no longer on my family GP’s list. I was given an appointment with a newly qualified GP. She suggested it was simply a tummy bug but took a blood sample to check for infection and inflammation. Nothing came of it so I, again, passed it off as a bad experience.

Me & Dave (my rock!) – London 2013

After working in Cornwall for almost two months I was tired beyond belief and getting the worst headaches. The fatigue was so extreme that I could have easily slept at my desk most afternoons. I was starting to make a complete mess of tasks at work and take days off. I’d been visiting the ‘little girls’ room’ much more frequently too but I’d put this down to the stress of moving so far away, the responsibility of a new job and a new house.

Then it happened again one morning. This time there was a lot of blood and I was petrified. I called my new surgery immediately and demanded to see someone that day. I knew something was wrong. As soon as the Doctor asked me why I had come to see him I broke down in tears and told him everything; the headaches, the diarrhoea, the forgetfulness and brain fog, the painful bloating, the mood swings, the nausea, the dizziness, the aching bones, the malabsorption, and the weight loss. I’ve always been slim but dropping to below 8 stone was not good. I looked and felt horrendous.

The first round of blood tests came back normal. I was referred to the hospital in February 2012 where more thorough tests could be done and lo and behold I tested positive for Coeliac antibodies, a Vitamin B12 deficiency and extremely low Vitamin D levels. I was told it was highly likely that diagnosis of Coeliac disease would follow. Suddenly it became clear why I felt like an old aged pensioner! My best friend had been diagnosed with Coeliac disease at uni so I knew about the disease and I almost felt embarrassed that I didn’t recognise the symptoms myself. I left the hospital, called my Mum and sobbed like a baby. It was a huge relief to finally have an answer though I now knew the challenges that I’d have to face.

By this point I resembled the living dead. I couldn’t bear to look in the mirror and see this pale, skinny, ill-looking shell of a girl anymore. I was told to continue with my regular diet until the endoscopy at the end of June. No Doctor ever mentioned how much gluten I should be eating during the run up to the procedure. As soon as it was over I stopped eating gluten. Knowing this was what was making me so ill made it so easy to cut out. Two months later I was told there had been a typing error and my results were in fact negative. That’s right, a typing error! The list of excuses included:

• there not having been enough damage done to the villi
• the possibility that not enough samples were taken by the TRAINEE ENDOSCOPIST!
• Or, I hadn’t eaten enough gluten in the 6 weeks prior to the procedure!

To say that I was absolutely furious is an understatement. Having finally started to feel better and like a normal human being for the first time in months, here I was being told to go back to eating gluten in order to have another endoscopy, because they had made a mess of the first one? I don’t think so! No way was I going to deliberately make myself that ill again. I am now quite happy to refer to myself as undiagnosed Coeliac/gluten intolerant.

Me – healthy & happy March 2013

Fast forward 11 months and I am, dare I say it, feeling good! I have to get B12 injections for life and I’m back to my original weight which has brought my confidence back. There have been some difficult moments in the last year but my brilliant other half and the online gluten-free community have been more supportive than I ever thought possible. Big *hi-five* for Twitter!

So, that’s my story; my journey. It may not be exciting and it may not be dramatic, but it’s mine. I hope that by sharing it I can encourage even one person who is experiencing digestive problems to see their GP. I did, and what a world of difference it’s made to my life. I’m now happy, healthy and living a @gfandfabulous life! 🙂

Tags: celiac, coeliac, coeliac uk, diagnosis, gluten free, gluten free food, gut feeling