My Coeliac Journey – One Year On

It was Easter 2011 and I was just about to set of for a break in Dorset with my wife and my parents when I was struck down with diarrhea.  Great timing and I was able to spend the next 4 days visiting every public bathroom in Dorset.  Lovely.  A week later and things had settled down.  The drains had come up in the back garden before we went away and despite being careful I assumed I’d picked up an infection from cleaning that up.

A month passed and my stomach and side were still really sore and tender.  I figured the infection had not completely cleared but thought I’d give it another week or so before heading to the doctor for the first time in 18 years.  Not many people know the next bit:  I was working in Bristol one day so I was getting ready to go and when I went to the bathroom I passed blood, quite a lot of it.  I made a doctors appointment there and then and set off to Bristol.  I did not sleep a minute that night.  I knew something was really wrong, and my mind ventured to the darkest places and most hideous diseases.

A few days later I saw the doctor.  Blood and fecal tests were taken which showed only that my bilirubin count was high, pointing to liver issues.  An ultrasound was taken but showed no problems.  A follow up blood test was taken and I went back to see the doctor for the results.  “OK Mr Gollop, your bilirubin count is almost normal now so good news” YAY!!, “however you have coeliac disease” UM, YOU WHAT NOW!? “You can no longer eat, gluten.  No more bread, pasta, pastry, cakes…”  OK THIS ISN’T PERMANENT IS IT!? “Yes it is”.

I toddled off home with some handouts to read in absolute shock.  I stared at diagrams of happy villi, and poor sad depressing villi like mine.  I sat there on the internet all afternoon, slowing adding to the long list of things that I could no longer eat or drink.  After work I drove to the supermarket and stood staring at the Free From isle I would come to know so well.  As I drove home I don’t mind admitting there were tears in my eyes.  The fact I didn’t have any of those horrible diseases I’d worried about was somehow lost on me at the time.

The next three months were the toughest of my life.  Despite chasing many times there was a 6 week wait to see a consultant, who looked at my blood test results and told me I needed a biopsy of the lining of my gut to confirm diagnosis.  Of course I had known this 6 weeks before!  A further 6 weeks passed before it was time for my endoscopy.  During this time I had to keep eating gluten to ensure I kept myself damaged.  I was in more and more pain, lost weight and was extremely fatigued.  This was nothing compared to the mental anguish and depression from force feeding myself poison and knowing I’d never be able to eat my favourite foods again.  I was angry and I’m sure I was not a nice person to be around at the time. 

On September 20th 2011 I headed off for my biopsy.  I opted for the throat spray rather than sedation and laid there as some crazy looking Eastern European man forced a massive looking camera down my throat.  For what seemed like an eternity I gagged, drooled and belched constantly.  Humiliating, and by the time I had finished I felt like I’d been through 10 rounds with Mike Tyson.  I managed to drive home and just sat around feeling very sorry for myself for the rest of the day.  The night before I had eaten pasta bake as my “last supper”,  the last time I ate gluten (knowingly!).  In early November a letter landed on my doormat confirming coeliac disease.   I felt no emotion as I read it, I already knew what it would say.

So here we are, September 20th 2012, one year on.  How am I now?  A 100 times better.  The pain has gone, I am no longer falling asleep at 7pm and bathroom trips are now that of a normal person.  A few things had unexpectedly improved too.  I had bad joint pain in my right wrist and also palpatations, these both went away as soon as I was gluten free.  They come back if I get glutened.  I now realise I was suffering from some form of depression, even before I knew I was ill.  I would lay awake at night thinking about all the things in life that were crap.  I’d decided life was pretty rubbish at the time.  I would spend too much time stressing/worrying/over analysing things which just really didn’t matter.  This was of course compounded by my health issues.  This all went away as soon as I was gluten free.  I also don’t randomly sweat now, and I strangely feel like I am a more confident person.  I feel like my body is still heeling though.  I’ve also learned cider is actually way nicer than beer.

I am sure gluten was contributing to problems for way longer than I realised.  Stomach pains and tiredness were always explained by bad diet, lack of exercise and working away from home before.  I now know these were merely contributing factors.  The early days were a massive struggle for sure.  I was terrified about eating out, not helped by being glutened in a well known pub chain by a “gluten free meal”.  This made me ill for three weeks.  This was quickly followed by the over confident waiter in a Greek restaurant in London who told me catering for me was fine.  A twenty minute conversation ensued started by “can you eat potatoes”.  I can assure you I have never enjoyed a meal less, despite not getting glutened.

For the first few months I felt alone in the world.  Nobody knew what I was going through, I was quite frankly sick of explaining it.  People would try and laugh it off and make jokes to make me feel better.  It didn’t work.  One day I happened to sign up to Twitter to follow a few football accounts.  I’d mentioned in my profile I was “cursed by coeliac disease” and had followed Coeliac UK and someone else my wife recommended.  Suddenly a few coeliacs started following me and by accident I’d fallen into a support group.  This was life changing.  Being able to “speak” with people who knew what you were going through on a daily basis was amazing.  I found that many of these people had blogs and I uncovered a wealth of information, recipes and product recommendations.  Life was suddenly looking up.  This coincided with my health returning and suddenly life was not so bleak.

A period followed where I had to work away.  With the help of some of the GF community I was able to find some safe restaurants and had some good experiences.  My confidence in eating out slowly returned.  Phoning ahead and asking questions about cross contamination became easier, though this is something that I’d still like to be more confident about.  I feel like in this last year with the support of my wife, the gluten free community, the NHS and Coeliac UK I have made massive strides.  After my weight falling below nine stone a year ago, I am now over 10 and a half stone for the first time in my life.  A normal weight for the first time in my life.

I found out I have osteopenia during the last year, a thinning of bone density.  This should reverse now that I am on calcium supplements, gluten free diet, having more natural calcium in my diet and doing more excercise.  However, this was a reminder that osteoperosis and bowel cancer were very real threats if my disease had gone untreated.  Now I reflect that while this disease is bad, at least I can treat it.  There are too many people out there who are not so lucky.  I feel thankful for this, and thankful for all the help and support I have received along the way.

I have started the Gluten Free by the Sea blog hoping that I can help people as I have been helped over this past year.  I aim to make this site something that would have been a god send to me a year ago.  I think blogging really is some form of therapy, and I now really feel like I have managed to turn a massive negative into some form of positive.  I really hope over the next year I can grow the blog even further and not only help people, but maybe even start to make local shops and restaurants aware that there is a market for gluten free food.  I also hope to improve my cooking skills and use my new found passion for food to be more creative in the kitchen.  I still have one fear to overcome which is travelling abroad.  Hopefully I can crack this one too.

If you are a coeliac reading this I can only urge you to stick to a strictly gluten diet.  Eating gluten will damage you, even if you don’t feel it.  You will feel the health benefits and you need to think of the long term risks.  Cheating does you no good and makes it harder for the rest of us to be taken seriously.  I can’t tell you how much better I feel from a year ago.  Also become part of the gluten free community.  Say hello on Twitter, there are so many people who will be glad to help.  Hopefully like me you might feel part of something special, rather than feeling like a lonely alien trapped on another planet as I used to it.  If you immerse yourself in the GF community there is a lot of fun and banter to be had.  This has also led to real life meet ups with some amazing people.  If you have experience maybe think about starting a blog yourself.  Whether it be helping people find local resources, travel tips or gluten free recipes there are so many people out there with something to offer.

Beeing a shy person, 12 months ago I never thought I’d put all my feelings on-line for you all to read.  I hope you have found this helpful or interesting.  Thank you so much to everyone who has helped me this past year, it’s been emotional.

Kevin

Tags: coeliac, gluten free, osteopenia