6 Month Update

 

It has been quite a while since my last post and given that I am due to have my antibody levels checked this month, I thought it might be time for a review of how I have been feeling and what has been going on.

Since my last update on being 'glutened' back in January I have been super careful to not end up in that position again. It took me about 6 weeks to properly recover from that aspect of things, but in weeks 5 and 6 I started to get really bad recurrent throat infections. Over the space of a month I was on 3 courses of antibiotics and my immune system had gotten so low that I developed a HUGE coldsore on my nose and required a course of anti-virals. I had struggled with a lot of ENT problems for about a year before any of my symptoms of coeliac appeared and for this reason my dietician has told me that this is all part and parcel of my particular case. She said the fact that I had been so sick in the lead up to my diagnoses could have actually triggered my coeliac to happen sooner rather than later. I will be seeing an ENT specialist in May so hopefully he will be able to put an end to that aspect of things.




Click here for more info on ataxia

Aside from this the only symptoms that have not seemed to leave me is the twitching, the numbness in my fingers, fatigue and lack of energy and upper body strength and the blurry shadowy vision. I saw my GP about this last week as my dietician had asked her to refer me to a neurologist about it. Her theory is that this is a case of gluten ataxia, the reason she wants to get it confirmed is for any hospital admissions etc that it will be known as old symptoms as opposed to anything new. My GP carried out her own neurological tests on me and was shocked that this hadn't been picked up sooner despite me having mentioned it to so many people that I saw. She said that there is definitely something there and decided to do some bloods to check for some things that are more difficult for doctors to pick up on such as Lyme Disease etc so I will hopefully have the results of that in a few weeks and will be able to go from there.

I find the prospect of ataxia quite scary, I have just come to terms with being coeliac I feel like I'm not ready for something like this to come at me so soon. The fact that there could be damage to my brain that is irreversible really scares me. I've spent so long questioning myself as to whether or not I was imagining it, had researched what it could be myself and had come to the conclusion of ataxia but because nobody thought anything of it when I mentioned it I still held out hope that it was something that would go away. In saying that if it is, it's better to know sooner rather than later as at least I can prevent it going any further.



The view from half way down

Energy wise, unbeknownst to myself I am improving. I say this as I am just journeying back from my boyfriends family home for the first time since mid december 2015 and the difference I noticed in my ability was crazy. When you get used to the same routine every day it's hard to judge one day against another, you forget how bad you have been feeling in the past and because you still don't feel youself you wonder if your even getting better.



View from the top

I didn't realise until his mother brought us out to our favorite place on a drive, it's down steps at the side of a cliff and the last time I could only make it half way down and was absolutely exhausted. This time after just having walked the length of the beach, I was able to make it to the bottom, walk around and almost ran back up some of the steps. I was out of breathe, but I did it. It wasn't until later I mentioned it to his mum and she took the opportunity to tell me it's as if I'm a different person. She reminded me of how tired I was and that I needed to go for
naps because I was so worn out the last time I was there. In saying that I still have days where I can't do much but I don't dwell on these days as much, my body has been through a lot and I allow myself these days as recovery days. So far I think that has been the most important aspect of this whole journey...listening to your body. It sounds so clichéd and common sense but it's surprisingly easy to forget something so simple and ending up doing more damage than is worth. My dietician says I may never get over the tiredness but that this is the key to managing it and living a relatively normal life.
For now,