Wow, one whole year being gluten free. Yay me! Let’s celebrate with a glass of champagne. Oh wait. I can’t drink anymore because of my stupid pancreas… so much to catch up on, so let’s begin.
For years, since my very early 20’s, I’d experienced stomach problems. From upset stomachs to feelings of nausea, headaches, joint aches, the dreaded ‘brain fog’, it was always attributed to IBS. And I accepted this. I accepted this because at least 2-3 different doctors told me that IBS was what it was. I was prescribed Mebeverine which made absolutely no difference and after a while I made the decision to stop taking them, I didn’t see the point, the pain, discomfort and sickness was the same.
After a few years it seemed to get a bit better, but then it came back ten times worse in the spring of 2011.
I can still remember the first week like it was yesterday. For the first time in a long time the twenty minute commute to work felt like two hours. I would get halfway to the office before the cramps started and I would continue the remainder of the journey in tears, feeling as though I was travelling at five miles an hour, terrified I wouldn’t make it in time. Thankfully, I always did, but once the fear set in it was impossible to just ignore it or shrug it off, and I’m sure the mental anguish that comes with conditions like this makes it a hundred times worse than it truly is.
My social life began to suffer and my confidence pretty much disappeared over the following weeks. I was too scared to leave the house, other than to go to work, and if I did have to go out at all, even if it was just to the shops, or out for a couple of hours in the evening for dinner, I would take a couple of Imodium tablets, just to remove the panic and worry of being caught out. This is a habit I’m still struggling to break out of, there are occasions when I’ve taken up to 4 at a time, not good.
The cramps would be crippling, and it became a regular occurrence for me to be locked away in the bathroom, doubled over in pain trying to do that muffled crying so that no one could hear me. I didn’t want anyone to hear me; I didn’t want to tell anyone what was happening to me because it was embarrassing! I didn’t want other people to know my bathroom habits or what was happening ‘down there’, it was too personal, it was private and I wanted it to stay that way.
Eventually it became ‘normal’ for me to have to visit the bathroom between 8-10 times a day. Sometimes something would happen, sometimes nothing would happen, and sometimes it was just so I could escape and fold myself down into a little ball and hug out the pain.
I don’t think I could have felt any more alone, or pathetic.
I was watching my friends going out and having fun and I just couldn’t do it. When I tried to be brave (dosed up on Imodium of course) I would spend the entire evening worrying, wanting to go home, and making sure I drove instead of having a drink so that I could leave whenever I wanted to. I even had to cut short evenings out with friends celebrating their birthdays because the stomach pain was just too much to ignore, and my biggest fear was having to use a public restroom to do ‘that which we do not speak of’.
After a few months I was so miserable I don’t think I could have hidden it anymore even if I’d tried. My mum insisted I went back to my GP and to be honest I was too tired to argue about it, even though I was adamant they would just tell me it was IBS again.
This time I didn’t give them a chance and I pretty much begged for blood tests. I knew it wasn’t IBS and I was so tired of being told that it was. It was weird but over the last year I had felt something change, and I knew my symptoms were so much worse than they used to be. Thankfully the doctor I saw this time was one I had known for years and he was brilliant. Really sympathetic and more than happy to take blood tests to see if we could find out what the problem really was.
I can’t remember how long I had to wait for the results, I’m sure it was no more than a couple of weeks, but I remember going back to see my doctor, being sat down, and being told that the blood tests indicated that there was a 99% chance that I had coeliac disease.
And I cried.
I cried because there WAS a reason I was unwell and it wasn’t bloody IBS! I wasn’t even sure what coeliac disease was at this point so it was brilliant that my GP explained it as thoroughly as possible for me and even printed out some documentation for me to take home and read. He advised me that the next step was to have an endoscopy to confirm the diagnosis.
I think I had to wait about a month for the endoscopy, and I couldn’t have wished for this to come around any quicker because I was to keep eating gluten until the procedure was done, stopping eating gluten would give a false result. There is nothing more frustrating than being told you need to keep eating the one thing that is more than likely making you sick, just so you can get a positive diagnosis.
The endoscopy procedure wasn’t too bad from what I remember; I accepted the sedation so the memory of the event is a bit fuzzy! I do remember the feeling of wanting to get the tube out of my throat but it wasn’t painful, just strange. I then got a few minutes to sleep it off before being allowed to go home.
After a couple of weeks the results came through. A positive diagnosis for coeliac disease.
The relief was incredible, to finally have an official diagnosis for why I’d been feeling so ill for so long. I’ve seen on Twitter the stories of the ‘last gluten meal’ for some fellow coeliacs, but I didn’t have this. From the moment the letter arrived to say I had coeliac disease I stopped eating gluten, I didn’t have one last binge on something I shouldn’t like Chinese or pizza, I just wanted to stop eating gluten, so I did.
I had a couple more doctor appointments, and a bone density scan which showed levels of osteopenia before I was pointed in the direction of a dietician and set forth on my gluten free future.
The dietician was brilliant. She ensured I got signed up with Coeliac UK and a whole range of gluten free food companies who sent me absolutely loads of freebies to try. I ended up with a cupboard full of pizza bases, flour, bread, biscuits, crackers, bread mixes and many other items. I definitely wasn’t about to go hungry.
I started taking vitamin D and C supplements and multivitamins as my levels were quite low.
One thing that is tricky is cross-contamination. I still get caught out by this, even after a year. I had to buy new spatulas, wooden spoons, chopping boards, toaster… and I’m so over the top clean in the kitchen now I feel like a totally different person, always on the lookout for that one stray crumb! I think I’m beyond a little neurotic now!
It was quite scary going gluten free; I didn’t know anyone else who had coeliac disease, there was no one to talk to, and I think that was what brought me online, and eventually to Twitter where I have come across so many brilliant, gluten free folk who know what coeliac disease is because they have it, who know what to do or take when you’ve been ‘glutened’ because they’d been there. I really don’t think I would be as comfortable with this diagnosis had I not met this brilliant bunch of people.
It’s still scary dining out, even if you do find somewhere that offers a gluten free menu, you still have to trust the kitchen to be aware of the cross-contamination risks. Additionally I’m still struggling to find places who serve more than gluten free pasta or pizza, simple, nice meals which are naturally gluten free end up being off limits due to preparation methods etc… it’s more than a little frustrating.
And then come 23rd January this year I hit my one year gluten free anniversary. I actually forgot and didn’t remember until a few days later, but it felt good to know that I had done an entire year gluten free and survived. I still got the random stomach upset and additional side effect, but nowhere near as bad as it was pre-diagnosis. I was told that it can take up to two years for the body to completely heal, so I just have to keep reminding myself to be patient.
And then if that wasn’t enough to deal with, February arrived and BANG! I was in hospital!
My super awesome friend Sue had been on at me for ages to stay at hers and go out for a drink one night and I kept saying no, partly because I’m not a heavy drinker, and partly because they only have one bathroom and ‘the fear’ of my stomach flaring up always makes me want to go home to my own bed and bathroom.
But the weekend of the 16th February I was feeling pretty good, really good actually. My stomach had been behaving for nearly two weeks and I was in a good place. I was with my friend on the Saturday as we were assembling her wedding invites which I had designed and just gotten delivered and I had easily been coerced by her and her fiancée to stay over and go to the pub with them to listen to the band who would be playing at their wedding.
We got to the pub about 9ish which was around about the same time the band started playing. By 11pm I had drunk about four gin and tonics, and that was when the pain started. It was just below my rib cage, but above my bellybutton and it came on really quick. It started off as a sick feeling which made me break out in a cold sweat so I went outside to get some fresh air. The pain started pretty quickly afterwards and I knew I was going to be sick so my friend came with me to the ladies, waited while I was ill and then got me a glass of water. I felt so much better after being sick and the pain went away. It was weird, but I knew it wasn’t from drinking as the sickness felt different. It wasn’t an ‘oh dear I’ve drunk too much and need to purge’ sort of sickness, it was a pain relief, and after a few minutes I felt well enough to go back out to the bar area and enjoy the rest of the evening. I was now drinking water; alcohol really wasn’t appealing to me at this point.
I went to bed that night at about 1am I think, it could have been a bit later but I can’t remember. All I remember was waking up at 3am in the worst pain I have ever experienced in my life. I lay in bed for a while thinking that if I took a few deep breaths it would pass, but when I realised it wouldn’t I crept into the bathroom, locked the door, and collapsed onto the floor.
It didn’t seem to matter how I positioned myself, the pain just would not go away. My entire body felt weak and I felt as though I was going to be sick but nothing would come up. I found that the best position to be in was crunched into a little ball, as low to the ground as I could go. It didn’t take the pain away but it made it slightly more bearable.
Some people might think I’m being melodramatic here, but I honestly thought this was it. I was convinced I was either going to die or pass out from the pain, and if I’m totally honest I even hoped that I would die as I just couldn’t take it anymore. The pain was so intense, I just didn’t know how much more of it I could take, so I crept back into the bedroom so as to not wake my friend up, grabbed my phone, took it back to the bathroom and called my brother.
I’m quite lucky I suppose as my brother is a paramedic, so is my sister-in-law, so I thought of no one better I could call.
There was no answer.
I think I sat on the floor for what felt like an eternity, totally unsure of what to do, when thankfully my phone rang. My brother was calling me back. THANK GOD!!!
I did the usual of apologising for waking him up but he was absolutely brilliant and did a quick assessment over the phone before saying he was coming with his wife to get me and take me into the hospital.
I’m not going to go massively into detail here as this is a gluten free / coeliac blog and I’m sure I’ve already bored everyone enough but this is pretty much what happened.
I was taken into hospital at about 4am Sunday morning, given morphine, hooked up to a drip and given numerous tests including a CT scan and an ultrasound over the space of a couple of days during which I was diagnosed with acute pancreatitis. I didn’t eat for five days, all I did was throw up, and all that came up was stomach bile, and even when I was told I could start eating again it took a while for my appetite to return. It was during the ultrasound that they also discovered a tennis ball sized cyst on my liver. At this point it felt like a rubbish bonus prize. I wondered what else they were going to find inside of me.
I was discharged after six days and sent home with a bag of medication and the knowledge that I would be receiving a letter at some point to go back in to have the cyst removed. Or rather, as they put it, to have a slice cut out of the cyst so that it would collapse into itself and not come back.
I was signed off from work for an additional week to recover and get some bed rest which was definitely needed. When the painkillers wear off it is quite uncomfortable and I have to take it nice and easy.
Oh, and another thing. While they couldn’t find the cause for the pancreatitis I’m unable to drink alcohol anymore. No more being drunk or tipsy, but on the plus side no more hangovers. I can have a small glass of wine, or maybe a sherry at Christmas, but to be honest I don’t think I will. If any alcohol increases the chance of the pancreatitis coming back I’m just not going to risk it, it’s too much pain.
So now it’s 2013 and I’m gluten AND alcohol free. One can’t help but wonder what 2014 will bring… coeliac disease, pancreatitis and a tennis ball sized cyst… that’s my three right? Surely things can only get better from here?!