Tag Archives: coeliac uk

Plymouth Coeliac Group Update

23 May

I blogged in April about the Plymouth Coeliac Group and how they were looking for volunteers to keep the group going, as Alice Williams and some of the other committee members were standing down.  I’m delighted to say that three more volunteers have been found to assist me on the committee, and that the group can continue.  An update was this week sent out to members to introduce the new team and update them on the groups activities.  If you are a Coeliac UK member in or near Plymouth and would like to be receiving group emails please get in touch with me and I will arrange.  Below is a copy of the email that went out this week:

Alice Williams wrote to you all prior to the April AGM looking for volunteers to take over the Group Organiser and Treasurer roles, and informing that the group was in danger of folding should nobody come forward.  Those who were present at the AGM will know that we have been successful in our quest to fill the positions, and the good news is that the group can continue.  Lai-Yin Wong Brooks takes over from Alice as Group Organiser and Lisa Bullard replaces Harry Booth as Treasurer.  As previously announced Kevin Gollop also takes over from Vivien Johnson as Database and Membership Secretary.  Steven Regulski has also offered his help and will join the committee and assist the new team.

LaiLai-Yin Wong Brooks (Group Organiser) said “I am looking forward to this new role. I want to make people aware of what coeliac is all about and help existing people look at alternatives that are available to make their lives easier.  I have a business called 8 and have recently been developing some new Chinese gluten free dishes.  I want people whether they have coeliac or any other medical conditions to eat healthy and lead an active lifestyle.”

GFKev_smallKevin Gollop (Database/Membership Secretary) said “I work in IT for Local World, the parent company of The Herald and I was diagnosed with coeliac disease in 2011.  I have been active amongst the coeliac community in Plymouth through my coeliac blog, Gluten Free by the Sea, and I am very much looking forward to getting involved with the group and using this new avenue to help fellow coeliacs.”

lisa_smallLisa Bullard (Treasurer) said “I was diagnosed with coeliac disease in 2005. I own my own bookkeeping and accounts business called Aplus Accounts and used to work with Kevin Gollop at the Herald before taking redundancy. I am happy to take over as Treasurer and look forward to working with Lai & Kevin for the Plymouth Coeliac UK support group.”

SteveSteven Regulski said “I am 64 years old and a retired Construction Project Manager, Married with 5 Children. I was diagnosed with Coeliac Disease in September 2012, following a Heart Attack and by-pass surgery. I am looking forward to getting involved with the Plymouth Coeliac group and supporting the other committee members.”

Rhoda Booth, Daphne Vidak, Rachel Taylor, Suzanne Stephenson and Lyn Crews were voted back on to the committee at the AGM and the new team thank them for their continued support.  We would also like to pass on our gratitude to Alice, Vivien and Harry for their great work and service with the group over the years and also for their on-going support during the transition period.  A big thank you also to Kathryn Miller from Coeliac UK who gave a very interesting talk on the latest research that the charity is undertaking at the AGM.

For Gut Feeling Week, Coeliac UK’s name for the 2013 awareness week, Lai-Yin and Steven manned a coeliac awareness stand at Sainsbury’s Marsh Mills to help spread the word to potentially undiagnosed coeliacs.  The group also drafted a press release that was sent to The Herald and received a mention as part of some excellent coverage.  You can read that article here, or view a PDF of the page here.

The new team are looking to push forward and one of the big challenges is to drive up engagement with younger people and encourage them to join in at meetings and events.  To this end the group is now on Twitter and Facebook, and aim to be actively talking to members and offering tips and advice through those channels.  So please, if you use those mediums then pop over and give us a follow or a like.  We will also be looking to make more use of the group page on the Coeliac UK website.

Facebook: https://www.facebook.com/CoeliacUkPlymouth

Twitter: https://twitter.com/CoeliacUKPlym

Website: http://www.coeliac.org.uk/get-involved/local-voluntary-support-group/group/plymouth

We also have to be mindful that not all members are computer users and we will not forget those people and aim to keep everyone involved.  We would love to hear your suggestions for the group going forward, and we look forward to meeting you all in the near future.

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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

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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! 🙂

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