MY STORY: “Don’t worry, we just need to find out what you can’t have, it might just be tomatoes!”
Hello everyone!
I’m sitting in my lounge, reading through my DM’s and I’m getting lots of questions about my diagnosis, how quickly I felt better, etc… so I thought I’d share a bit of my story with you. Hopefully it might help a few people or maybe it’ll just be an interesting read 🙂
MY CFS/ME
Starting at the very beginning (as the song goes, “a very good place to start!”), in 2007 I had 2 years off school as I was diagnosed with ME. I took all my GCSEs from my kitchen with my dog at my feet and mum making me breakfast. We even had to stick these signs all over the house…
I took a total 11, even though the docs advised 1 or 2… stubbornness properly isn’t a great trait for managing ME!!? I was pretty much bed bound for a large part of it but with help from doctors, medication and the never ending support from my family I got back on my feet and returned to school for my A-Levels.
Going back to school was the strangest thing. I’ll never forget walking into the sixth form common room on the first day and feeling a complete sense of panic – it was full of change. Friendship groups had changed, fashion trends had moved on and the music everyone was singing along to was totally alien to me. It was tough, but I did it!!! 🙂
My next step was a maths degree at LSE & then I joined a bank as a trader in London (yes I know, also not ideal for someone with ME!). I’d had ongoing problems with my stomach throughout but doctors had always put it down to IBS – standard right?!
COELIAC DISEASE
Roll forward to 2017 & my boyfriend and I went to the beautiful Amalfi coast. I, however, was not feeling so beautiful. After eating far too much pizza and pasta, I spent 99% of the time looking like I was about to give birth. I know you can’t tell in this photo, but the pain was insane.
Once home, my boyfriend talked me into going back to the doctors. After a full blood test, I found out I had coeliac disease. I’d never heard of it before but I was still devastated… no idea why haha. I rang mum and she said “don’t worry, we just need to find out what you can’t have, it might just be something like tomatoes”. We had absolutely no idea what coeliac disease was. We can laugh about it now, but it shows how little people know about something that’s actually not that uncommon (1/100).
The GF diet didn’t really help my symptoms to start with so I was referred to a nutritionist. I think it’s true for a lot of people – when you switch to a gf DF diet you suddenly rely heavily on foods you hadn’t consumed much of before, like lentils & pulses and strange grains that are in loads of gluten free breads etc. I was finding it impossibly tough to work out my triggers so the nutritionist recommended a Cyrex 10 allergy blood test (it covers foods that are cross reactive with gluten or common intolerances in people with coeliac disease).
We were very sceptical at first but went through with it (i can tell you more about why if you’re interested). The results came in on my birthday and I found out I was intolerant to >30 foods, from chicken to coriander and watermelon. Happy Birthday to me!!!! And no wonder I couldn’t work out the triggers myself… it was EVERYTHING I’d been eating.
Update: 2019
Although its a total pain, eliminating these foods 95% of the time has given my stomach some breathing space to heal and I have seen some improvement. I’m now at the point where I can start introducing foods back, starting with the low fodmap ones, but it’s a long long road and requires levels of patience higher than I knew possible.
Unfortunately all these changes & the pressure I was putting on myself elsewhere in life has caused a relapse in my ME, so I’ve been off work for a little while… hence all this time for cooking!! But just as I did in 2007, I’m sure I’ll back on my feet again!!
Update: 2020
Taking a deep breath as I write this because its all changed! I’ve made the decision to leave my trading career because I never, ever want my ME to come back in the way it did in 2007. My body was telling me to stop and I didn’t listen then but I am now!! That means I’ve got tons of time to work on a full recovery, without any pressure. AND tons of time to work on recipes for you lovely lot!
My ME doesn’t have tooooo much impact on my current life. Lockdown is suiting me in lots of ways – its forced me to slow down! I’m quite a long way off what I used to do, but I’m managing it a lot better and to the outside world I’m “normal”. I bet a lot of you ME sufferers will understand what I mean by that!
In terms of coeliac disease, my stomach is 100x better. The reason I say that is because, back in 2007, my stomach was in such a pickle that I was never able to work out what was hurting me because it hurt nearly all the time. Now, my stomach is probably ok 4 days out of 7, so I can generally make a good guess on the other days as what I’ve changed that could be causing an issue – e.g. too much onion, oats don’t agree with me, potentially glutened at wherever it may be. I have IBS as well as coeliac disease so its not always food that causes my stomach to hurt – anxiety, fatigue, tight clothing, all sorts of things can have an impact but I’m learning to live with that too!
The world of Instagram is helping this time around too – I’ll be forever thankful for all the tips I’ve found and support I’ve received from the lovely people I’ve met on here too.
MY TAKEAWAYS
- If you’ve gone GF & it’s not helping yet, could it be because you’ve become heavily reliant on another food that you didn’t really have before?
- Be patient, it’s not always a quick recovery
- Use Instagram – if you’ve got a question, no matter how silly or personal, ask people on here. I’ve always found everyone helps out & just an understanding ear can be all you need! if you’re having a tough belly day and want advise on how people help to soothe it, or just want to know what the best GF pasta is…instagram is the one!
Heres some other blog posts that might help too:
If you want more info, just shout
Jess x
