Tag Archives: gut feeling

My Gut Feeling Week

19 May

Awarenesss WeekWell just let me see wow! What a week Gut Feeling Week has been.  I have been blown away by the fantastic sense of feeling and togetherness amongst the coeliac community on Twitter and Facebook.  There has also been great support from non-coeliac gluten free folk too which is very much appreciated.  I think we have all done a great job in trying to raise coeliac disease awareness, and if we can help just one person get diagnosed it will all have been worth it.

CookiesMy wife Abby, my parents and my cousin Chris are all doing a gluten free week to help raise awareness with their friends and colleagues.  I thank them for their support and this means a lot to me.  I started the week by taking some of Abby’s delicious home baked gluten free (of course!) cookies in to work to announce the start of the week to my colleagues.  I also posted a blog aimed at non-coeliacs giving a (hopefully) concise overview of coeliac disease and what the week is all about.  I then asked all my Twitter and Facebook friends to share this to help raise awareness of coeliac disease to all their friends and followers.  There was a great number of retweets and shares so I thank everyone who did for their support.  This post is here and it’s not too late to share!

On Tuesday I posted about some great gluten free offers that companies were running for the week and I thank those companies for supporting the cause.  Coeliac UK have been encouraging people to share their diagnosis stories for the week and I have really enjoyed reading them.  There have been some powerful and moving stories, but at the same time uplifting as we read how people have come out of the other side.  It’s also been concerning reading how the medical profession has let so many people down.  We can only hope that things are improving and that weeks like this are raising awareness with GP’s and not just the general public.  It has been an honour to be in a position to share the diagnosis stories of some people who do not (yet!) have their own blogs, and I thank Carrie, Becca and Steph for being so brave and letting me share their stories.  Even now reading other people’s stories make me feel less alone and it’s been enlightening to read some of the pre-diagnosis symptoms.  Steph’s story in particular had many seemingly uncommon similarities to my own.

CarrieBeccaSteph

HeraldAs I work in the I.T. department of my local newspaper (The Plymouth Herald) I asked a colleague if they were planning on running a story for Gut Feeling week, and thankfully they thought this was a great idea.  They also ended up running a cut down version of my own diagnosis story and ended up dedicating a full page to raise coeliac disease awareness.  Lai-Yin Wong Brooks and I drafted a press release on behalf of the Coeliac UK Plymouth Voluntary Support Group, and this also featured heavily.  I am very grateful to my colleagues Clare and Sophie at The Herald for doing such a fantastic job as you can see that for yourself here.

We also visited Las Iguanas during the week which has newly opened in Plymouth.  As we were in a large group it gave a good chance to talk about Gut Feeling week and what it meant, particularly as Abby was eating gluten free too.  I had a great meal, though Abby struggled a bit to find something she liked that was both gluten free and vegetarian.  You can read my review here.  Hopefully Gut Feeling week will help spread the word to restaurants and more will have a separate gluten free menu like Las Iguanas.

So a brilliant week and a huge thank you to everyone who has contributed and helped support it.  This is the last day so let’s have one final push and spread the word.  If you’re Tweeting don’t forget to use the #GutFeeling hashtag, it would be great to get it trending.  I’d love to hear what you all got up to during the week, so please feel free to comment below and let everyone know.

Do you have bloating, fatigue, IBS, diarrhoea, vomiting, anaemia or abdominal pain? Could you be living with coeliac disease and not know it? Listen to your gut with Coeliac UK’s Gut Feeling campaign – visit www.coeliac.org.uk/gutfeeling for info.

Kevin, Gluten Free by the Sea

Guest Post: Steph’s Story

17 May

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

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

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! 🙂

Guest Post: Becca’s Story

17 May

Great to be able to bring you some more diagnosis stories on Gluten Free by the Sea today, the first is from Becca Fetterman.  It is yet another astonishing story and it’s very interesting to have the perspective from childhood too.  The more I read the more convinced I am that Gut Feeling week is as much about making the medical profession more aware of coeliac disease as it the public.  Over to Becca:

My Coeliac Journey

Hard to know where to start. When my mum weaned me she started giving me Weetabix pretty early on. I got so sick I was hospitalised, I was in hospital for weeks with my mum fairly convinced I would die. By some fortune my consultant went on holiday and the new consultant tested for coeliac and as a baby I was diagnosed, if only that was the end of the story.

kid_beccaBeing young and coeliac was tough, my parents friends all had a Becca shelf in their kitchen but I was aware of all the stuff I couldn’t eat, especially at birthday parties.  My mum always used to make me a big cake for my birthday and freeze pieces to take to parties.  I remember one year at my birthday I was so upset about not being able to eat the yummy treats so I ate one.  I ended up throwing up all over the lucky Care Bear I got for my birthday!

My dad never really understood what I could and couldn’t eat.  If I ever left my pack lunch at home the school would call him and he would buy the only thing he knew I could eat 1kg bar of dairy milk (no longer gf), ironically I used to swap some for fruit.

I had annual tests to check I was doing ok and was ‘still coeliac’. I was always very under weight.  At 6 I was given an endoscopy, horrible at any age, at 6 I had a panic attack. At 9 my bloods were clear so they said I needed another endoscopy, my mum refused and the consultant suggested trying gluten and seeing what happened.

I ate gluten for 20 years thinking I had grown out of CD.  During this time I went to bed at 9 nearly every night and it took me a week to get over a night out.  I was constantly ill with infections but my tummy was fine.   When my mum was waking me up by ringing in the evenings at uni she insisted I went to the doctor and told them about the ceoliac history.  The Dr said I was anaemic and lacking folic acid probably a left over from being coeliac as a child and put me on supplements.  I never really got better.

In 2007 my boss told me she thought I had glandular fever as I had been ill for so long and that I wasn’t allowed back to work until I had a blood test. I went to my GP who read my history said it was nonsense and sent me straight for a coeliac test.  I spent the 6 weeks before my endoscopy eating every yummy treat I could think of.  I had never really eaten bread or beer as they made me bloated but it never stopped me with cakes!

After I was diagnosed I tried to cut out all gluten. I became super sensitive and got really ill from little accidents.  I still test positive at every blood test so must be on the most sensitive side of the coeliac scale but I now just feel a little uncomfortable from an accident.

becca_familyI feel very lucky that I was re diagnosed just before trying for children.  My levels in my blood were so low I would have probably had big problems.  I am now completely paranoid about my daughters having it despite testing negative but they eat very little gluten.  Having had children soon after diagnosis I am still very tired, but my immune system has clearly recovered as I get ill so much less than before.  My husband has been amazing learning to cook GF and making yummy food for me.  The best thing he does is the being difficult when at restaurants and friends houses, interrogating on my behalf as this is the bit I dread.

becca_sisterWhilst I was eating gluten my sister who had always had severe asthma and eczema and chronic infections decided to cut gluten out. They all disappeared, can’t believe no one ever thought to test her.  After I was re diagnosed I told her to go to a specialist so she can get bone scans etc. she tried to get diagnosed but got so ill she gave up.

On re-diagnosis I found the groups on Facebook so useful and supportive and recently I have loved connecting with coeliacs on Twitter.

Becca – @beccafetts

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