I remember the first time I went into Sainsbury’s after I’d been told my new diet and everything that entailed and having the coeliac website up on my phone. I couldn’t get my head around everything I couldn’t eat; (what the hell is barley?!) So I wanted to write this post as to what I would have wanted to both hear and know back then, to know that others have similar things – which I’ve learnt through the online world. Five years ago there wasn’t the range of products we’re seeing today and nor was there really the awareness. You’ll still be often faced with a blank stare when people don’t know the word ‘gluten’ but it’s getting better. If you’re going through a similar thing and find yourselves having a cry outside the doctor, feeling incredibly frustrated by symptoms but no diagnosis, it’s quite lonely and I hope my story and how I managed through altering my diet might give you a little more hope and a renewed determination to go into the doctors and really push for answers.
I was about 20 when I started with symptoms. It actually began with an addiction to Costa of all things. I’d turn up to class late, with an innocent grin but holding a Costa hot chocolate; the giveaway of where I’d been instead of turning up on time. That was what I first started to react to, it’s not surprising in hindsight and it’s a bit of a shock I got away with it for so long. So out the window was my Costa hot chocolate, it made me far too ill. Following this, in order, was a Magnum ice cream, a KFC Krushem and eventually, my beloved chocolate bars. It wasn’t even me that put it together but my best friend Ellie who suffered much of my agonising stomach pains in class after said hot chocolate – ‘have you ever thought you’re allergic to dairy…?’ ‘oh.crap.’
I mention the dairy in with the gluten because it’s all interlinked and actually made my gluten free diagnosis take an awful long time to figure out what was wrong – I had no idea at all it’s quite common for dairy and gluten to be linked as allergies. I genuinely didn’t think I’d be so unlucky to get both. Now, I’m no doctor so wouldn’t want to give medical advice because one time I was confused that my stapler wasn’t working and stapled my finger to test why it wasn’t working – another, I wondered how strong superglue was and stuck my fingers together. I digress but you get the point – whilst my body and it’s wierdness is probably a medical marvel, my brain is no medic. Therefore, if you think you have something similar to me – always go see a doctor, don’t just cut out dairy and/or gluten as it’s quite bad for you. Additional to that, the tests don’t work well, you have to be eating the allergen up until the test, otherwise they can’t tell the damage it’s doing to your body.
SO! Let’s fast forward. I’ve graduated and slowly but surely, my stomach and body seems to be breaking apart again. What I can remember from that time, along with the stomach pain everytime I eat, is the overwhelming exhaustion. It’s not even possible to describe it to someone who hasn’t had it but I love the term ‘brain fog.’ Sometimes, if I’ve been contaminated, I have a few days of it and I wonder how I survived for so long with it everyday. My only way to explain it is if you imagine you’re in a plastic bubble; so you can hear people talking but it’s almost like it’s through a barrier, then you’re trying to read a book but can’t quite grasp what you’re reading, forcing you to read and re-read your last sentence, never quite working out what it was saying. Frustrating to say the least. The reality of this, coupled with the fact you’re in agony everytime you eat makes it super hard to be a recent grad on the look out for a job. I went to work for my mum whilst I was going through this, thank God I could but I really feel for those that don’t have that opportunity and luxury. She understood that sometimes I found it super difficult to stay awake, was sometimes zapped of life with brain fog and following breakfast and often lunch too, I had stomach pain that made me lay on the floor and then go to the loo. We were working in the same office and could see that when I got home I’d go straight to bed where I’d remain until we had to get up the next morning. It’s like total exhaustion washes over you and you’re zonked.
I don’t want to turn this into a dig at GPs because I know they have a lot more to deal with that just little old me, but to say I wasn’t quite taken seriously is perhaps an understatement at this point. I know that on social media, you’d be forgiven for thinking that we’re all super happy to be gluten free (and dairy free) but perhaps that comes from learning what’s wrong with us, how to manage symptoms and then how to overcome them with diet if possible. That’s not to say that everyones journey back to being well is an easy one – the hours I spent in tears when no one could give me an answer, especially before they were even testing me was crazy – as was the fact that I was written off with IBS. Debilitating in it’s own right, it’s just not what I had and I knew that just from Googling symptoms. I was put on Buscopan and then another stomach relaxant that I forget the name of for after I ate. They contained lactose so I ended up throwing up into the bin at work – not my finest hour.
After -ahem – samples, were finally taken, I got taken seriously after they realised that I wasn’t being dramatic and something was wrong within the levels of something or other (again, not a doctor, I was just glad they were going to do something about it.) Then began the real tests. I’ve had people message me online and ask about the various tests because they’re nervous. My overall advice is that the prep is always worse than the actual procedure (though I’d always recommend being sedated, they don’t always want to sedate you because it costs more but honestly – push for it.) The tests are frustrating if they don’t find a definitive answer for symptoms. More tears ensue. I’ll skip this part. So – over a few months I had a colonoscopy, endoscopy and something that I think was called a Barium x-ray if I recall correctly. All not nice in their own way but honestly worth the end result. If you do want to know more about any of these things feel free to message me on Instagram and I’ll do my best to answer your questions – again, not a medical professional but can tell you about it from a patients POV.
The end result was a dairy and gluten free diet that I’m super strict with. I wish I knew that I’d get the results that I have just from a change in diet. It’s quite scary at the time to go through all the tests and and meeting after meeting with the doctor and thank God for my mum who came with me to every single appointment. I know some people get a blood test and it’s all figured out from there but that wasn’t the case for me – and if it’s not the case for you then that’s okay too. You’ll know your own body better than anyone and if you know something isn’t right then persevere with the doctors, keep going and insisting they take you seriously, unfortunately they might not at first or try to pigeon hole you into having IBS. If you do have IBS then the low FODMAP diet will be life changing for you but if it doesn’t work, then keep going to the specialised doctors where hopefully you will get referred to a specialist like I did that will change your life! The GP ultimately can’t know everything about every speciality that people have and it took me being referred to the hospital that was where I really got to the bottom of everything.
At the end of it, I’ve been dairy free now for about five years and gluten free for about two and a half. The change with how I feel and my general health is insane – you wouldn’t believe that food can affect you so terribly. The acne I had on my cheeks and back from dairy disappeared (though admittedly I still do have patches of acne but that’s hormone related according to my derm so not super relevant here but jeez body, gimme a break) the ulcers that filled my mouth disappeared when gluten was given up, I no longer have the agonising stomach pain and my Usain Bolt impression running to the loo is no longer needed unless I get contaminated and the brain fog has cleared. It’s a small price to give up chocolate bars and pizza I suppose. It’s not to say I’m always chirpy and happy about the change but I think when reflecting how far I’ve come, it’s such a great result and I only notice it when I suffer cross contamination at a result of eating out. Despite what the online world sometimes – ignorantly – says to sufferers of allergies, whatever they are, I won’t stop eating out no matter how often this happens. I think it’s important to mention that because lots of people when recently diagnosed seem to think they have to give up life; going on holiday, going out for dinner to socialise etc. It’s why I started my Instagram and blog, to show others that life goes on and adaptations can be made to make it easier. People usually want to help and give you a meal that’s delicious and won’t harm you, no matter where you travel you can always find something to eat – I even found a vegan gluten free burger in Yosemite National Park in the middle of absolutely nowhere.
So there you go, a brief overview of my story to being healthy again – tears and all. If you have a diagnosis story, leave it in the comments!
… I still reserve the right to sometimes have a meltdown that I can’t have Parmesan on my pasta though.
(Magic stars, i miss you.)