My health journey

It started when I was very young. 

Autoimmunity and gut issues run in the family, with my mum having coeliac disease and hypothyroidism when she was a teenager and my dad having irritable bowel syndrome.  

It’s not really a surprise that I got something too... 

In my very early years, preschool age, I would have issues with my digestion and wasn’t particularly well at stages. After a while of investigation, I ended up getting a biopsy to confirm I had coeliac disease. 

At around 15 years old I started feeling pain in by big toe, in the toe itself and the ball of the food by that toe. It was sore but not too impacting and a bit puffy and hot from the inflammation. I didn’t think too much of it, assuming it must have happened from playing sport or something, maybe kicking a football weirdly, but it didn’t go away. 

After about a week or two we went to the doctor, they initially said it was gout. But also, couldn’t see why a 15-year-old would have gout.

With some bloods done and some further investigation, I was referred to a rheumatologist. 

It was confirmed I had a gene that is associated with autoimmune arthritis and I was diagnosed with undifferentiated HLAB27 (the gene) arthritis. Put on medication, methotrexate, and given some naproxen for if it was ever particularly sore especially for if I was going away on long hikes or doing a lot of activity.  

I was generally doing well and didn’t think too much of it. I didn’t particularly like the medication but didn’t get given any other options around what I could do otherwise.  

When you’re given methotrexate, especially as a young woman, they make it very clear to you that you cannot get pregnant on this medication or it can potentially cause birth defects or miscarriage. This never gave me too much confidence in the long-term effects that methotrexate may have on my body. 

Because of this factor I knew I would eventually have to come off the medication to get pregnant (far in the future) and would have to figure out how I would do this. 

A few years later, at around 21/22 years old, I had a not so good idea to go off my medication (one of those classic things you should generally never do without at least talking to your doctor first). I figured that when I first presented with symptoms it was only my toe that was sore and inflamed and assumed that would be all that would happen again because I never had any other signs of other joints having issues. 

Oh boy was I wrong... 

I was fine for about a month, not really feeling any different, but this is roughly the amount of time it can take for methotrexate to leave your system.  

Then one day I got a sore knee, I didn’t think too much of it and just assumed I had twisted it a bit funny and it would settle down.  

But it got worse. I saw my mum a couple days later and she (classic mum things) said something to the effect of “you can hardly walk you need to go to a doctor”. We ended up skipping the middle man and just going to a physiotherapist, still under the assumption that it was a muscular or tendon/ligament related issue. 

A few more days go by and my entire body is blowing up with inflammation. My other knee is sore too, both of which are becoming very swollen, one ankle, both wrists, a few fingers and toes, all puffy like balloons. I’m hobbling around on crutches, which is near impossible anyway when you have two incredibly painful wrists and knees, it's pretty hard to favour one. 

I ended up at the doctor, getting bloods done and my CRP (C-reactive protein) which is an indicator of inflammation in your blood was at 95 which the doctors said was pretty crazy. The normal range is below 5. 

As you might expect I ended up back seeing a rheumatologist in an emergency appointment and they promptly put me on a high dose of prednisone to try to get things under control while my other medication kicked back in. My diagnoses was changed to juvenile idiopathic arthritis. 

I was in so much pain and I could hardly walk, to bend my knees was agony, I was mentally and physically exhausted, and life was unsurprisingly miserable.  

At this point I was spending most of my time on the couch binge watching TV, I couldn’t do much else. 

Getting back on the medication didn’t really work. I ended up on methotrexate and sulfasalazine and being slowly weaned off prednisone. My symptoms where better and I could move around more easily (but still not without pain).  

I would wake up each morning, stiff from not having moved overnight, and would find it really tricky to move around. Always wearing shoes because I had to get new very supportive orthotics because my arch had essentially collapsed and my ankle strength disappeared because of the inflammation. I would spend about half the day doing as little as possible, not really moving from my spot on the couch, until my medication from that morning would eventually kick in.  

Life was really hard. 

Knowing that going for walks and moving was good for me, both for my mental health and my body. I began to go for short walks most days. It was hard and painful but I knew it was generally going to be better for my body to be moving a little bit rather than not at all and getting out in nature and into fresh air does wonders for the mental health. 

After a while, about 6 months later, because my symptoms where still very active and the medication wasn’t being particularly effective, I was prescribed Humira (aka adalimumab), an injectable medication that is very expensive and pretty hard to qualify for funding for. This was to use alongside the methotrexate. It did a great job, it didn’t take too long for my symptoms to pretty much completely disappear, and after such a long time, I was beginning to feel like a normal person again. 

I was grateful to be finally feeling like I could do normal people things and start to move and exercise more. I began swimming reasonably regularly for some light impact exercise, started road biking, going for longer walks and my partner and I eventually ventured out on a short overnight hike. 

I didn’t enjoy having to take such strong medication and injecting myself was not fun.  

Up until this point, I had looked into some nutrition stuff here and there to do with inflammation and arthritis but never really tried too hard to implement much.  

I began looking into more around arthritis, inflammation, gut health and autoimmune disease. Listening to podcasts, reading books and learning about doing temporary elimination diets to help heal your gut.  

I realised that part of the severity of my issues was most likely because I was never super strict on being 100% gluten free. Which, with coeliac disease, is a really bad idea. I never realised that every little bit of gluten I consumed was damaging my gut lining. Also being lactose free, and regularly not worrying too much about it, didn’t help either.  

I became really strict with never having any gluten or lactose. I slowly started injecting the Humira less over time and found that I didn’t seem to need it as regularly (part of this was also avoidance because that sh*t really stings).  

Eventually I did a full elimination diet, working to find what foods potentially triggered my symptoms. It was hard to know how significant some foods could have been impacting me while on medication still, because if symptoms were triggered it wasn’t as obvious, but I still went through the process to heal my gut and would notice some small reactions. After a while (and after actually talking to my rheumatologist this time) I stopped taking the Humira and felt pretty good. 

I managed to get more of an idea of what helped and worsened my inflammation. Noticing that exercise had a huge positive impact and stress quite a negative one. From the elimination diet noticing there where a fair few foods that made my joints worse other than the obvious sugary and processed foods with minimal nutrient density. Foods like nightshades, eggs, mushrooms, and if I drunk too much coffee.  

I avoided these foods for quite a while but found I could eventually reintroduce some of them once my gut was in a much healthier state without any consequence.  

Over time I managed to wean myself off all medication and haven’t had to take any other than occasional ibuprofen since November 2022. There have been times that I have been stiff and in pain in some areas, usually because I haven’t been as strict with my diet as I need to be or if I've overdone certain things sugar or have high stress.  

I now know what I need to do to support my gut health to help reduce inflammation, and I can usually pin point why something has caused a small flare. I have learnt to respect my body more and look after it, working hard to consider my gut health and how certain foods may impact me.  

From hardly being able to walk and being in severe pain every day for about six months, I managed to drastically improve my gut health, reduce my inflammation and understand the things that support my body to be well both mentally and physically. My inflammation is now generally within the normal range and life is much better. 

How my life has been since learning what my body needs to be well: 

• I completed a 100km cycle race 

• I Spent two winters in Canada snowboarding (which my knees can handle again), with a lot of hill walks and exploring in nature. 

• I can run again without pain. This took a really long time to be able to do and was actually really exciting when I managed to do it without pain in my hips, ankle, or knees.  

• I have more energy; I definitely still get pretty tired sometimes and need more rest than a lot of other people to balance my energy levels, but my energy is way better than it was. 

• I very rarely deal with brain fog or memory issues anymore (you don’t realise how much your brain isn’t working well until you can actually think clearly again). 

It’s been a long and slow journey, and it will never be over as it’s something to manage throughout my life, but I am glad to understand my body much better now and how to look after it.