Tag Archives: diagnosis

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: Carrie’s Story

16 May

One of the big feature’s for me this week has been reading people’s diagnosis stories.  There have been some amazing accounts both powerful and emotional.  They all end on a positive note though which is very uplifting.  There is a round up of many of these posts on the coeliac.me.uk blog.  Fellow coeliac Carrie Squair has been inspired to write her own diagnosis story for Gut Feeling week after reading these, and it’s a privilege to host something so personal on Gluten Free by the Sea.  It’s another great account, and I know from writing my own story how tough these are to write.  A lot of these stories have made me realise that my own story was relatively straight forward and there is still much work to do raising awareness of coeliac disease.  Huge thanks to Carrie for sharing her story:

My name is Carrie, and I have coeliac disease. Mix in some dairy intolerance and a serious problem with pineapple and you have a long list of food to avoid. Or so I thought at first anyway!

People always ask how long it took to get diagnosed- officially it took me 5 or 6 years, but looking back the signs were there a long time before that. I don’t have any family with Coeliac Disease, but my mum’s side of the family has a lot of allergies (including peanuts), intolerances and auto immune diseases (diabetes and thyroid problems).

When I was a baby I had soya milk as I was allergic to cow’s milk. I was also allergic to eggs. I grew out of that eventually but always had stomach problems if I overdid it on the cheese.

I was a vegetarian as a teenager (after an incident with corned beef hash, a painful memory to this day!), and very pale, tired and emotional. I had incredibly heavy periods, until eventually, age 16 and the day of our year 11 prom, I collapsed at school. I went on holiday to Spain with my family that summer and by the time I came home I was struggling to eat. Every time I ate more than a few mouthfuls I felt sick. I virtually gave up food, only eating when I didn’t have any choice in the matter. I couldn’t see the point of eating something that made me sick. I lost weight.

It only lasted a few months- once I realised size 8 clothes were falling off me I made myself start eating properly. My body didn’t react too well to that though, and I started taking laxatives to help. It felt like the only way to deal with my problem. I knew it was bad but I didn’t see the doctor. I stopped taking them eventually then the bouts of diarrhoea started.  It didn’t occur to me to go to the doctors in spite of all the (sometimes very) emergency trips to bathrooms!

When I was pregnant in 2003 blood tests showed I was anaemic. In 2005 I was tested for glandular fever, that was negative but I was anaemic again. At no point did I raise my stomach problems.

Carrie1

Paragliding in turkey during one of my “healthy” phases

Eventually I went to the doctors in 2007. I didn’t go into as much detail as I should have- I was scared it was my fault for everything I’d put my body through in my late teens/early 20s. I was told that yes, I probably did have IBS but they’d do a couple of tests just to rule out anything more serious. A couple of weeks later IBS was confirmed. I was also anaemic – again.

I became depressed. I was fed up of feeling ill, always being tired but never being able to sleep, aching all the time and suffering with headaches. I hated my body and how it didn’t work how it was supposed to. I was given anti-depressants, sleeping tablets and iron tablets (well I was anaemic – again!) and sent on my way. The GP told me I obviously didn’t absorb iron properly and said I’d have to start eating meat. He didn’t spot this as a symptom of coeliac disease. So I gave up on my vegetarian diet in the hope I’d get better. I never got better, I just had periods of time where I was less ill than others, usually when I was on a “diet” and eating mostly naturally gluten free food, I just didn’t know it at the time.

Then summer 2012 happened.

I travel a lot for work so have a lot of time on trains living on packet sandwiches. I didn’t have the energy for exercise or eating properly- when I wasn’t at work I was asleep. My stomach was huge and it hurt to do anything other than lie in bed. I cried a lot then too. I had IBS, it was my fault, and I knew my bad diet and lack of routine was causing the attack.  Nobody knew how bad things had got for me even though there were times I bolted out the office or a meeting for the toilet.

A friend with IBD was worried though- she was adamant there was more to my bad summer than an IBS attack. I spent a couple of days in Manchester at a conference. The train journey home was agony and all I wanted to do was be sick. I made it home, just, and threw my bags in the house and literally crawled to bed in tears. By that point I couldn’t stand anymore, I couldn’t explain to anyone what was happening to me because I’d lost the ability to string a sentence together. I passed out on top of my bed then woke shortly afterwards crying in pain. I spent the next few hours locked in the bathroom.

My boyfriend persuaded me to go to the doctors. He looked back over my history and said there was no record of a test for coeliac disease and wanted me to have a blood test. I agreed and a week later I went back in to be told he was 99% certain I had it as he’d never seen such strong results before. I laughed and said thank you- I sort of knew what it was and knew it wasn’t my fault. It also meant there was a solution. I was really happy! I left with some leaflets and spent the next few days researching.

The next 6 weeks were awful. I couldn’t bare the fact I was poisoning myself at every meal. I worked short days because the urge to sleep was so strong and I was terrified it would hit on my hour drive home from the office. I couldn’t make decisions- choosing between beans or egg on toast had me in tears! I had constant headaches, back ache, nausea, bloating and was forever running to the bathroom.

The biopsy scared me, and when it was over they gave me a cup of tea and a biscuit. Good one NHS- a biscuit for someone with coeliac disease?!? I didn’t eat it, and haven’t knowingly eaten gluten since.

I was diagnosed on Friday 7th September 2012. I’ll never forget that day- I was desperate for the confirmation letter but it hadn’t arrived. I went to the doctors and they were able to confirm I had coeliac disease. I would be referred to a dietician and could now get gluten free food on prescription. I went home and cried. All weekend. Once I’d been gluten free for a few weeks dairy became my nemesis. It only affected my stomach but that was enough. I cut it all out on my dietician’s advice.

Carrie2

Me and my daughter Gemma- I need to look at getting her tested as she’s at high risk of coeliac disease

Then I got better. I don’t fall asleep all the time, I don’t have headaches (unless you count listening to arguing children!!), and I don’t have back ache or emergency bathroom trips. I finally feel like that big black cloud of depression, anxiety and panic attacks is gone. I’m…dare I say it…normal? I’m still struggling with bloating occasionally and haven’t worked out what it is that triggers it. I don’t see the dietician now (my local NHS trust only give you 2 appointments) so I’m a bit on my own trying to find solutions. The GP thinks it might “just be a bit of IBS” and that might be true, or it might be my body still recovering.

The biggest support for me has been the twitter community. There are no local coeliac support groups I could go to (the one I’ve been allocated is over an hour away) and coeliac UK say there isn’t the demand for one where I live. I have no “real” friends with coeliac disease so I turn to the twitter group when I have questions, or when I feel down about it all. There’s always someone there to help, offer advice based on their experience and generally make you feel like you’re not alone. So thank you to everyone who has helped me over the last six months!
I’m still learning, but I’m so much happier and healthier now. Turns out there’s more food I CAN eat than food I can’t!

Carrie

@CarrieSquair

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