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. 

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6 comments on “Living with a lifelong disease 

  1. Chris says:

    I know how you fell, i have IBD and funnily enough recently got told have low vitamin D – which has meant unexpected joint pain. Quite disappointing as I thought all was under control and sailing along nicely. The hardest thing I find is to not sound like you are getting down over small things – it just hits home sometimes as you so rightly note, that these things are for life. Hope the Vitamin D sorts it & you are OK again!

    • Jo Alcock says:

      That’s exactly it. I feel stupid sometimes for letting myself get down about it, as in the whole scheme of things it’s such a minor issue really, but it still sucks to have it!

  2. GFTracy says:

    I had low iron earlier this year – it’s really common with the gluten free diet for exactly the reason you gave – without the fortified grain foods, it’s tough. Do you happen to be vegetarian too? In my case, I was living with a vegetarian so I was eating mostly veg at home, and meat is a big iron source too. After all that, I did some research and created some charts showing common food sources of iron, Vitamin D and a few other nutrients that tend to be problematic for coeliacs. Maybe this will help you too! http://glutenfreefablife.com/2016/06/03/celiac-disease-and-nutrition/

    • Jo Alcock says:

      Thanks very much Tracy. I’m not vegetarian but had reduced my meat intake. I’m no longer doing that in an effort to up my iron. I’ve also started taking multivitamins and liquid iron so fingers crossed I can get my levels back to a normal level soon. Thanks for sharing your post and the tables; really useful 🙂

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  3. LJ says:

    Do you mind me asking what multivitamins you chose? I struggle knowing which ones are safe to have. I bought the Bassett multivitamins but couldn’t find any solid information on them so they went to my partner.

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