So after a crazy weekend of gaining over a thousand new followers in less than 24 hours, I thought it may be helpful to share a bit about me and my tummy story so far. I really hope it doesn’t sound too self-indulgent, but instead wanted to share some of the challenges and mistakes that I have made, in the hope that you guys don’t have to make the same.
When I try to think back to when my tummy trouble started, I think it had actually been going on for a lot longer than I realised at the time, but for me there was a trigger point.
Around Christmas 2013 I caught a tummy bug – nothing too exciting, just a standard two-dayer spent in-between bed and the toilet, with a lot of vomiting involved. After seeming to recover from the bug pretty quickly, I didn’t think much of it. However weeks later I found that I was regularly throwing up after meals, despite feeling fine before hand. At the time I was extremely body image obsessed and I was so worried that it was in my head so tried to hide it and ignore it. The fact that I seemed to only be ill when eating carb-heavy or “cheat meals” backed up this theory in my mind.
After a couple of months the symptoms started to get worse, and not only was I constantly feeling and being sick, I would end up lying on the bathroom floor clutching my stomach in agony, and going between either not being able to go to the bathroom, or not being able to leave.
I did a bit of research and at the time it all pointed towards gluten – which made sense when linking with the carb-heavy meals such as bread and pasta. Because of this I decided to give it a try and cut it out (I know now that I should have sought medical advice first, but even four years ago there was a lot less information available online, and at the time I was both uneducated and desperate). Being the bread lover that I was, cutting it out completely didn’t really work but I managed to cut back and make a few swaps. Within days I started to feel a lot better, but there would still be times that I would majorly struggle. I was starting to dread eating, especially eating out, having to cancel social arrangements due to being too ill or bloated and just general felt really down and anxious about it all. Also my family and friends definitely started to get suspicious about the sickness, and I knew exactly what they were thinking (and saying, from the overheard conversations).
I think it was more my mum rather than me who had the final straw, and finally marched me to the local GP. This is where the ten million trips to the doctors came in. As per pretty much everyone in a similar situation, my journey with the GP began with the good old “are you sure it isn’t in your head?” questions. After a month or so of getting this and getting nowhere my good old mum got so peed off that she took me to a private hospital. Within days I was thrown at every ultrasound unit, had been milked of blood, given gastroscopies and biopsies, and all the other glamorous stuff. After all that, everything came up fairly normal except being told I had a hiatus hernia. When asking about gluten I was told that nothing showed up in terms of coeliac disease, however by this time I had pretty much cut it out completely, so was told that unless I started eating it again the tests would not be accurate, therefore if I feel better by cutting it out then to continue.
So what had I gained from all the tests? Pretty much nothing! The doctor sent me away with Lanzoprazole for the acid that was apparently caused by my hernia, and a piece of paper with a link to Kate Scarlata’s blog with the advice to “give the FODMAP diet a go”.
Meeting the low FODMAP diet
With absolutely no guidance except the scrawly piece of paper, no referral to a dietician, and having never heard of the low FODMAP diet before I felt pretty confused and overwhelmed. I remember getting home and searching online for the blog; finding a great big list of low vs high FODMAP foods and thinking “how the *&%$ am I going to do that?!”. I already felt like I was missing out on so much by being gluten free, how could I possibly cut out garlic, onion and what seemed like most fruit and vegetables. With food being such a big part of my life (my dad was a professional chef and mum is basically Nigella) it hit me massively, to the point where I remember sitting on my bed crying into my printed out lists thinking it was going to be impossible.
Again, I had no proper medical advice so had to go with the very little amount of education there was online; trying my best to cut all unsafe food out. I wasn’t sure how long I had to cut it out for, and in result I ended up doing it for way longer than the 6-8 weeks that you should.
Those first few months were horrendous. I avoided any social situation that involved eating, and any time that I couldn’t avoid it ended up in a near-on emotional break down and me suffering the consequences for days later. I had no one to talk to that could relate to what I was going through and it made me feel so lonely and down.
Four years down the line
Almost four years since I first went gluten free, and over three years since following the low FODMAP diet I am now in a MUCH better place. About two years ago I started to see a lot more research on the low FODMAP diet come out in the UK, and spent time researching how it should be done. Since then I have been slowly reintroducing and am pretty much there in terms of knowing my personal triggers and how to deal with them. After years of going to-and-fro with the doctors I finally changed my GP a few months ago and started from scratch with the diagnosis. After ruling out all the major baddies (thank god), I am 2 weeks into keeping a symptom diary and have an appointment next month to review. I am almost positive that the diagnosis will be IBS(C) and if I’m honest, I will actually be so relieved to just hear them say it so I can accept it and move on.
I’m still not sure whether the bug had anything to do with it or was a completely unrelated incident, but looking back and knowing what I know now I believe it is fairly likely that I do have coeliac disease and that was the cause.
Starting my blog and setting up a dedicated foodie Instagram account at the end of last year was probably the best thing I have ever done. Living with this condition has caused me so much emotional and physical pain but the amount of support I have found through the free-from community has been unbelievable I have met some amazing friends and have realised how common the feelings and symptoms are, and there is a surprising amount of comfort that can be found in knowing you’re not alone.
Despite not yet having an official diagnosis, having a chronic illness and having to follow a restrictive diet now part of who I am. Sharing my journey and helping others has become my passion and despite it being the biggest pain in the arse (excuse the pun), I wouldn’t change it for the world. It has forced me to be creative, meet some amazing new people and given me my “why”.
If I could give one piece of advice to anyone going through a similar journey it would be; talk about it! There is so much more advice and support available compared to even a few years ago so make use of it. 1 in 5 people have IBS and 1 in 100 have coeliac disease; not to mention those with Chron’s and other intestinal diseases and disorders – so you are not alone!
Actually, two pieces of advice; seek professional help. Following a low FODMAP diet needs to be done right, and if it isn’t it could actually have negative affects on your health. Ask to be referred to a dietician and go from there.
If you have made it this far then well done! And thank you! God I can ramble on. And I hope this was of even just a tiny bit of help 🙂