Living with a lifelong disease

I’ve been diagnosed with coeliac disease for almost 7 years now. That’s over 20% of my life (to save the Maths, I’m 32 and was diagnosed when I was 25). Most days I don’t even think about it; it’s just part of who I am. I’m used to having to check everything I eat is gluten free and unlikely to have been contaminated. I’ve always been strict with my gluten free diet; I don’t want to knowingly do myself harm, and the fear of infertility (and various other conditions) is a huge risk I’m not willing to take. I appreciate for some coeliacs they don’t worry as much about the risks and don’t follow the diet as strictly. For me though, although I don’t like having coeliac disease most of the time it doesn’t have a huge impact on my life and as frustrating as it can sometimes be to have to talk about it when eating with someone new, it’s really not a huge hardship. Sure, I have moments where it gets me down (I’d love to try a Krispy Kreme doughnut!) and it can make occasions tricky (Christmas is a particularly challenging time of year), but it’s pretty much under control now. 

Or so I thought. 

You see the thing with a lifelong disease is that you have it for life (yes, I know that’s stating the obvious!). As with most other things in life though, it doesn’t necessarily stay the same. Just when you think you’ve got used to everything (the cool kids might say this is ‘the new normal’), things can suddenly shift. In my case this was caused by me going to donate blood a few weeks ago. I’ve been regularly donating for a few years now, though my iron levels are often borderline and once I wasn’t able to donate as they were slightly too low. This time round however they were shockingly low. To the extent that I’m not going to be able to donate blood for at least 12 months and when I went to the GP following the donor centre’s recommendation the doctor saw me immediately and I had additional tests in both the doctor’s surgery and at the local hospital that same day. It was all a bit of a blur, but the care I received was truly excellent – it really made me appreciate how amazing the NHS is and how we can sometimes take it for granted. 

So what’s going on? Well, I have low iron, and low vitamin D, but my B12 levels are in the normal range and my IgA test (for checking my coeliac disease is under control) came back normal. I’ve been put onto high dose Vitamin D tablets for 8 weeks, and I have an appointment with the doctor tomorrow to discuss if I need to do anything else. I’ve researched multivitamins and am taking some daily ones which are gluten free (I’d stopped taking my previous ones as I could t be sure they were gluten free). There are a few potential conditions which need to be ruled out, but it’s looking like perhaps it’s just a case of me not getting all the nutrients I need from my diet. Which sounds simple to change, though of course with the limitations of coeliac disease it has an additional level of complexity (I can’t have cereals for example which are a common source of iron and vitamins). The consultant at the hospital has passed on some information to my doctor I believe so I should hopefully know more after my appointment tomorrow.

I’m glad it’s been noticed, and is being taken seriously in case it’s something more major. However the reminder that I have a lifelong disease that could cause all sorts of future complications has really sucked. It makes me feel like damaged goods; someone who is weak and fragile and needs looking after (which as a fairly independent person has really not been a welcome thing to deal with!). I know I’ve been very lucky so far – my diagnosis was fairly straightforward and much quicker than many other coeliacs, and as of yet I don’t have any other autoimmune diseases. I’m fully aware I’m at an increased risk of many conditions though, even if I do everything I can to keep my coeliac disease under control.

If I learn anything new about my situation that may be helpful to others, I’ll write another blog post but for now I just wanted to share a bit of what I’ve been going through. Partly I’m writing this for therapeutic purposes to help me process things, but also in case anyone else with a lifelong disease is going through similar frustrations and can take solace from the fact they’re not alone.