My Coeliac Journey – One Year On

20 Sep

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

34 Responses to “My Coeliac Journey – One Year On”

  1. little missed gluten September 20, 2012 at 10:27 am #

    Big hugs Kevin, I know how scary it can be to ‘put yourself out there’ but this is a wonderful blog post (for a while it felt as though I was reading about myself) and a great blog overall. It takes a lot of courage to tell people your coeliac story, you should be very proud of yourself. Laura :o)

  2. Kevin Gollop September 20, 2012 at 10:38 am #

    Thank you for your kind words Laura, it makes it all worthwhile when I hear things like that. I dithered about putting this in the public domain, but I hope my story can help people who are going through diagnosis. Thank you for all your support in the last year too!

  3. Saara September 20, 2012 at 1:00 pm #

    Kevin, this is such an amazing blog post. It must have been hard for you to type such an honest account of your life leading upto your diagnosis.
    This will help so many people who’ll read this post knowing that someone else understands what they’re going through.
    Keep blogging! Your blogs amazing and I can see good things coming your way 😀 xxx

    • Kevin Gollop September 20, 2012 at 1:19 pm #

      Thanks Saara, that means so much coming from a blogging legend like yourself! 🙂 As you well know yours is one of the first blogs I discovered and really did help me along the way. It was you asking me to guest blog for you that led to this blog being created for sure, so thank you for your support along the way! xx

  4. Lyndsay September 20, 2012 at 2:10 pm #

    This is like reading my life story! I’ve been gluten-free for 8 months now and its nearly 12 months since my initial diagnosis. Finally I feel loads better. It’s nice to be reminded that you’re not the only one and to know that I wasn’t being silly when I cried a LOT over my diagnosis!

    • Kevin Gollop September 20, 2012 at 2:17 pm #

      Thanks for the comment Lyndsay. This is one of the main reasons for writing this piece, to show that we all go through it and we are not alone. I hope people just diagnosed will read it and know that they are not being silly too!

  5. theglutenfreecheerleader September 20, 2012 at 2:38 pm #

    Brilliant post. I think you’ve basically managed to sum up how every coeliac feels at various points pre and post diagnosis. I’ve been gluten free for three months now and still struggling, I feel embarrassed when I have to ask for a gluten free menu and it’s so frustrating when people don’t understand what you mean, especially since I work in hospitality in a restaurant which has particularly good gluten free options. Thanks for letting me know it gets better!

  6. Cat September 20, 2012 at 2:45 pm #

    This is a really brave post, Kevin, well done for having the strength to talk about the last year so honestly. As I said on Twitter, so much of this resonated with me! I can remember sitting and crying thinking about all the things I would no longer be able to eat but at the same time, forcing myself to keep eating them in preparation for the endoscopy was horrible.
    I’ve only recently started to discover and get in touch with other coeliacs through Twitter and blogging, and my mood and attitude has improved drastically. There’s such a great community out there. Your blog has been such a help already and will be for so many others in the future – keep it up! 🙂

  7. Annie September 20, 2012 at 2:57 pm #

    Tears in my eyes as I read this. I am so very, very glad that you went to the doctor in time and that you have been able to take control of your health and make such a great recovery.

    This post is a very honest account that I am sure will help very many others who read it, especially those facing testing or newly diagnosed.

    Annie x

  8. Kevin Gollop September 20, 2012 at 3:02 pm #

    Thanks for the amazing comments Annie, Cat and Kathryn. I am getting quite emotional reading them all! x

  9. Martin leaves September 20, 2012 at 9:53 pm #

    Sorry to see you have had a tough year!

    I am so shocked to read you have had such a tough year I am short of words? Not like me to be like that!

    Just keep chin up and be strong, let’s go for a nice Cider soon!

  10. sara Austin September 20, 2012 at 10:53 pm #

    Hi, your story has given me hope, I am 3 weeks into being gluten free and I hate it!!! Feel I have lost my life. I loved eating out and havent been out since, I am so depressed. Hate coeliac disease.

    Sara x

    • Andrea Clayton May 12, 2016 at 9:11 am #

      Hi Sara ,
      I think every Coeliac understands where you are right now , because we have literally ALL been there , I was diagnosed about 8 years ago , and it is still “not fair ” but you will survive it and slowly your confidence in eating out will return , ALWAYS check before you eat anywhere , try not to feel to conscious that you are “making a fuss” , most places are now catering for us (sometimes it may only be an omelette /chicken /jacket potato ) . I now travel abroad with confidence ( there will always be the odd slip up ) but on the whole I manage quite well . Always carry your own basics I.e. Bread and treats .
      And the remember the Coeliac mantra ” If in doubt , don’t eat it ”
      Peace x

  11. theloop1501 September 22, 2012 at 8:11 am #

    Hi Kevin,
    Great to read my own story near enough! I was diagnosed officially in August 2011 though I knew around May time!
    I felt all the things you did and still feel angry at times. I still don’t like asking about cross contamination and my big issue is trying to eat lunch on the hoof when we go out for the day.
    I see you joined Gluten Free and Me on FB – they are the best people in the world in my book.
    So thanks for this Blog, keep it up and good luck as we continue to navigate our new world of food!
    Pete Holmes

  12. ScootsKernow September 22, 2012 at 6:38 pm #

    A familiar story indeed, Kevin, and a relief to find out that the ‘food poisoning’ at festivals over the years was, in fact, due to beer (and not due to eating a dodgy veggie burger).

    Four years on, and the eating out challenge is still there. Even now, I still get anxious when attempting to eat away from home, especially if I’ve forgotten to bring some crackers, or snacks with me.

    If I’m in foreign lands, I try & remember to bring a http://www.celiactravel.com/cards/ with me (with the meat & poultry crossed out) and hand it to the person taking the order – they check each time in the kitchen, usually spend a little while trying to figure out what’s possible and then say “we could do you …” … small family-owned places are often able to cope better than large chains, as your order is less likely to get mixed up.

    And I still double check when they come back that it’s ‘safe’ … and have had food taken back to the kitchen because it’s contaminated (including fries). The latest was the fish that should’ve been with salad & appeared on my plate with pasta … they took it back to the kitchen, cut off the piece that had touched the pasta & gave it back, however the pasta juices were still on the dish. The poor chef realized his mistake & grilled a fresh piece of fish for me, this time without the flour! If it looks or smells wrong, it probably is.

    Oh, and if you’re a red wine fan, be warned of the gorgeous oak-aged ones … the barrels are often coated in wheat paste, and boy is that painful.

    Keep up the blog, Kevin – inspirational stuff 🙂

    • Kevin Gollop September 22, 2012 at 7:04 pm #

      Thanks for the comment Carmen, some great advice there!

  13. glutenfreenotebooks September 24, 2012 at 8:34 pm #

    What a great post, Kevin! A brave and candid account and I’m so glad that, not only did you take the bull by the horns and go to the doctor, but that a year on, you’re brimming with positivity and have embraced this new life. You’re a great ambassador! I just wish I’d gone to doctor a couple of years ago for a formal diagnosis either way. It’s in my diary for next year when I can pluck up the courage! Xx

  14. Sarah Ram September 25, 2012 at 2:22 pm #

    Well done and sorry I’ve only just seen this. Thanks for putting up such a brave and honest post. I imagine you have made others feel less alone and more confident that they can tackle the many challenges of being a coeliac. You’ve done amazingly and you are quite the inspiration.

    To Kev!!! 🙂

  15. Celiac and Allergy Adventures November 9, 2012 at 6:52 pm #

    Finding the confidence to eat out is the hardest thing. I try not to let having Celiac Disease deter me, but it does seem like most times, I get sick after eating out regardless of their gluten-free menu.

    • Kevin Gollop November 9, 2012 at 7:07 pm #

      Things are improving all the time in the UK. Social media and blogs can play such a huge role in helping us find safe places to eat out. I see you have a lot of other allergies to deal with, dealing with coeliac is bad enough so that must be really tough.

      • Celiac and Allergy Adventures November 9, 2012 at 7:10 pm #

        It adds a bit of complexity to it 🙂 My food allergies have been life-long though so I’m used to them. Celiac Disease is newer for me so it’s harder to find restaurants that can accommodate that. I agree that social media and blogs are a great tool! It’s good to find someone in another country as a resource, since I love to travel when I can.

  16. Charles Penman December 7, 2012 at 1:13 am #

    Well done.

    I’ve been two years gluten free and felt your pain and frustration with every sentence – even down to the first restaurant trips. (Mine was an Italian restaurant who informed me that everything on the menu was ‘gluten free’)

    Unfortunately my diagnoses came too late to stop the development of a tumour (related to coeliac disease) and subsequent surgery and chemotherapy.

    So….stick to your diets people.

    • Kevin Gollop December 7, 2012 at 7:55 am #

      Thanks for the comment Charles, a stark reminder of the seriousness of the condition we live with. Hope you are well on the road to recovery.

  17. Tracy Attridge March 26, 2013 at 11:19 am #

    Wow! This was definitely well worth the recommendation! All those thoughts and fears sound very similar and it is strange to think quite how many other symptoms it could actually have caused. I too sat and read about it when I first had the positive blood test and it suddenly made so much sense! Thanks for sharing this with us 🙂

  18. Rich May 14, 2013 at 8:27 am #

    Great post mate. Must’ve been hard to write, but know that your efforts are inspirational and not just for coeliacs.

    Oh and sorry for all the potatoe questions! 😉

    • Kevin Gollop May 14, 2013 at 10:30 am #

      Thanks for the kind words mate, can’t pretend it was easy putting it all out that. Not exactly been my style over the years to over share like this!

  19. alwaysamum September 22, 2013 at 6:55 am #

    I have enjoyed reading your post… there is so much emotion and physical pain caught up with a diagnosis of Coeliac Disease and you are right, it feels like a very lonely journey at the time. Social media has been such a wonderful way to share not only stories but recipes, tips, advice and places to eat out. Keep at it.

  20. coeliacandme September 22, 2013 at 7:47 am #

    Wow, what an emotional and heartfelt post. I am coming up to my one year diagnosis too and, not surprisingly I suppose our experiences pre and post diagnosis are very similar. I also have osteopenia too! Glad you found me on twitter!

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