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My dearest bloggers,
If you’ll indulge me for a few minutes I’d like to take a hiatus from the book posts & poems to talk about something different. Something that has become uncomfortably close to me very recently.
You wouldn’t know this, but I have spent a fair portion of the past decade sick. This has ranged from nondescript ick feelings for several weeks at a time, my immune system attacking itself for an unknown reason (seriously, I baffled my gp for a long time), having such bad Raynauds disease that I was put on meds for 3 years, & having an awful digestive system. The digestive issues led to me being tentatively diagnosed as wheat intolerance about 7 years ago. due to this I have lived a mostly wheat free life since then. But I haven’t been really getting better.
In March of this year, I was finally diagnosed with celiac disease, after 6 months of new symptoms & fresh hell. The GI doctor said yup you’re celiac, my own consultant said yay we have a reason for basically all your symptoms ever, they were both happy & told me to go live a gluten free life & be well.
Except…that’s not how that works.
Now I’ll admit, I thought that was how it worked, I had no idea what to expect & thought I’d just eat the right stuff & be better. Well that’s not the case.
Since my diagnosis I have definitely been better in terms of stomach pains, bloating & the random vomiting I so regularly suffered with. What I didn’t realise is that there are other symptoms to celiac disease that simply will not go away.
I’ve had fatigue before, that crippling I-cannot-get-out-of-bed fatigue that I put down to tiredness from working mad hours. What I have now is what a dietician friend called ‘gluten withdrawal fatigue’. After talking to her & then searching the gluten free community online, I’ve discovered that this may never go away. I may have this a couple of times a week/month as standard. And let me tell you, it is hell.
I’ve had days where the effort of getting out of bed is to much, when I cannot fathom getting up the stairs to go to the bathroom, when I have to stop & rest on the street for a minute. I cannot describe it without tears forming in my eyes.
Apart from this, I’m still getting stomach tenderness, something that I’ve frankly been living with for so long that I’m completely used to it.
Actually there’s a plethora of symptoms that I could go through & bore you with, but I won’t. This is not a pity party. This is an educational party. I knew nothing about how horrible celiac disease was going to be until I was diagnosed with it & trying to live with it. & it’s only been 6 weeks really. But I did, genuinely think I was going to start to feel better straight away, & have since discovered it will take months & months, & may never actually happen.
There has been a lot of frustration since then, I will admit. I have been so angry. I thought I’d be better, but I’m not. I thought it would be instant, but it won’t. It’s clear that very little is known about this disease by health care professionals, unless they have it. & it is a disease, something I have to wrap my head around. It has its own agenda. & the only management for it at the moment is to stay away from gluten in my diet.
My doctors have been taking it as a sort of victory – yay we finally know what is wrong with you after all these years, celebration – but that’s not how I feel. I now have two autoimmune disease at work in my body, hitting me at every turn. & though there is a certain relief that there’s a reason behind me being ill all these years, it doesn’t make it better.
Do you know what celiac disease does to the human body? Coz I do, I know now. & it’s horrible & it’s exhausting, & I didn’t know that it would be constant.
It’s so frustrating, but I’m sure that once I wrap my head around it, I’ll be able to cope better. Right now, especially because of the fatigue, there’s a lot of tears, a lot of anger. But I’ll get through that, I’ll make a plan, & I’ll struggle through like I have been for the past decade.