My Strange Skin
As a coeliac, a stroke survivor on Warfarin and a lab rat for a medical research centre, I’ve had my blood taken many times in the last ten years. I also have several injections a year for vitamin B12 and a yearly one for flu.
I never need a plaster, as despite being on Warfarin, once the needle is taken out, the skin seems to shut the hole tight.
On the other hand on a typical night, I’ll lose just over a kilo in weight, whilst I sleep. I once spoke to a sleep expert on the radio and they said that was normal.
But the funniest thing that happened, was one day not unlike today for weather with rain about and not cold, I fell asleep on the living room floor in my underwear.
About half-an-hour later, I awoke and thought for a moment, that I’d gone blind, as I couldn’t see a thing.
I then realised that the room was full of water vapour, as if I’d left the kettle on the stove. But I have an automatic kettle and there was nothing on the stove.
So where had all the water vapour come from?
There was only one place! It had leaked from my skin and the temperature and pressure, were just right for the fog to form.
My skin is often very dry and I usually start the day with a deep bath, when I put my head under the water and irrigate my dry eyes, which an eye surgeon, once described as the driest he’d seen.
Twice-Yearly Jab Could Replace Statins For Millions
This is an article in today’s Times.
As I have four B12 injections year, that would fit well with my health care.
The Curse On My Family
Something has dripped through the genes and behaviour in my family, that could well explain, factors that contributed to the early death of my paternal grandfather and my youngest son; George.
I have known six of my relatives well; my father and mother, my father’s mother and my three sons.
I will ignore my mother and grandmother, as both lived to their eighties, which is probably good by any standards.
I shall also ignore my eldest son, as I am not in contact with him.
I believe that my coeliac disease, which must be inherited, came from my father and both my late wife and myself believed that if any of our three children were coeliac, it would have been George. But neither my father or George were ever properly tested.
As a child, I was sickly and I was always being taken to the doctor and I had endless tonics and potions.
It only gradually improved when I got to about ten or so and why it did has never been successfully explained. But I can remember being off-school for large parts of the Spring term several times.
I can remember a couple of times in summers, when I was about eight or so, suddenly giving up playing with friends and going home to watch television or play with my Meccano. I think I just found it too hot or perhaps my eyes didn’t like the sun.
In some ways, I was just following my father’s behaviour, which generally involved tinkering with his car in the garage or working in his print works. He would occasionally sit in the sun to smoke his pipe, but I never ever saw him strip off on a beach say.
From about seven, he always took me to work at the weekend and I enjoyed myself doing real jobs, like setting type, collating paper and pulling proofs.
If it left me with any psychological traits, it was that hard work is good for you!
But it kept me out of the sun.
I got married to C at twenty-one and within four years we had three sons. In some ways this got me out in the sun more and perhaps in my late twenties, when we were living in the Barbican, I started to experience better health. I was probably getting more sun, as in those days, I tended to cycle across to Great Portland Street regularly. But C used to drag me out in the sun.
Over the next thirty years or so, my health often tended to deteriorate in the winter, but I think it is true to say, it improved marginally, when the boys grew up, as we started to take more holidays in the sun.
Then in 1997, when I was fifty, I had a particularly bad winter and a very elderly locum decided I needed a blood test to see if I lacked anything. It was the first time my blood had been tested and I was found to be totally lacking in vitamin B12.
I struggled on, with nurses injecting me with B12 every month or so, until my GP sent me to Addenbrooke’s. After another set of blood tests, they said, I was probably coeliac and this was confirmed by endoscopy.
I certainly felt a lot better on a gluten-free diet.
I was also now able to walk and work in the sun and sunbathe without getting burnt. Although, avoiding the sun was still burned into my behaviour, so I often retreated under an umbrella.
Another change was that whereas before going gluten-free I was always bitten and C never was, after going gluten-free, the reverse was true.
I only remember one bad winter from that period and that was when C had breast cancer in 2003-2004, which I think was a sunless winter. We didn’t have our long winter holiday in the sun and I paid the consequence with plantar faciitis, which some reports claim is linked to vitamin D deficiency.
After she died, my problems to a certain extent returned and my GP actually suggested I wasn’t getting enough sun. So in all weathers, I drove around in my Lotus Elan with the top down, to make sure that I got the sun.
I felt a lot better.
If I look at George, he also had my father’s and my behaviour of avoiding the sun. As he smoked heavily, whilst he wrote his music in the dark, was it any wonder he got the pancreatic cancer that killed him?
The curse on my family is of course coeliac disease, which before diagnosis, seems to make us avoid the sun. My father and George certainly did and I would have done before diagnosis without C’s constant persuasion. Now though as I showed in An Excursion To Lokrum, I have no problems in the sun and rarely use any sun screen.
We’ve had some miserably weather over the last few months in London and I come to the conclusion, that I just haven’t got enough vitamin D.
I’ve also only recently found out, that gluten-free foods are not fortified, as regular ones are. So I don’t get any vitamin D through my food.
An Excursion To Lokrum
As I’d missed all of the full day trips, I took the boat to Lokrum and had a walk round for three hours or so.
Before I was diagnosed as a coeliac and went gluten-free, I couldn’t have done a walk like this.
It was almost, as if my blood couldn’t move the heat away fast enough from my skin and it all overheated. But once, gluten-free and with blood full of B12, the heat transfer was better.
I used to burn badly some years ago, but I don’t now. After Lokrum my face was just a healthy colour.
Intriguingly, my father, who was probably an undiagnosed coeliac, rarely went in the sun and was very much a man for wasting time in his garage or shed.
My son who died, appeared to me to be the most likely to be coeliac and he was always hidden away working on his music.
Dementia Has Stabilised
According to this report on the BBC web site, research from the University of Cambridge has shown that dementia levels are stabilising.
A few years ago, Oxford University proved a link between having low B12 levels at 50 and dementia, if you had dementia in your family.
Could it be, that GPs, who now check out bloods regularly are having an effect?
When first tested at 50, my B12 levels were non-existent. Now at 68, they’re spot on!
And what is one way to help your B12 levels? – Go gluten free!
As other studies at other world-class universities, like Nottingham, have shown that a gluten-free lifestyle lowers your changes of getting cancer, I think that going gluten-free because of my coeliac disease, wasn’t one of the worst lifestyle decisions I made.
INR Results Of A Coeliac Using Warfarin And Taking Terbinafine
This graph shows my INR a period between the 20th of May and the 25th of June.
I should say that I have a degree in Control Engineering from Liverpool University.
My aim here is to keep my INR between two and three, with a target value of 2.5.
Since starting to self test, I normally take around 4 mg. a day of Warfarin, but I have found that five is a better dose for when I’m taking Terbinafine, which has been prescribed by my GP for a fungal infection. The drug is well-known to affect the action of the Warfarin.
So now I take 5 mg. unless the INR is 2.8 or more. In which case I reduce the dose from five to four. On the other hand, if the level is 2.2 or below, I increase it to six.
The average INR value for the period shown was 2.6 with a standard variation of 0.2.
The peak at the beginning of June may have been caused by a B12 injection or hot weather. Both of which seem to raise my INR.
You will notice that the INR went up around the beginning of June. I can’t be sure, as I don’t have the dates, but this may have been caused by having a B12 injection.
Not Getting Pregnant
It is reported today, that the Government is changing the IVF rules. But they should also change a few other things, based on my experience.
I have recently traced my family tree back to the 1820s. What is rare, is that in my father’s line, few of the women have given birth. My sister didn’t for a start.
Ten years ago, I was diagnosed as a coeliac, which showed itself in a severe lack of B12. I now moderate a list on the Internet for coeliacs and have come across several examples of female coeliacs, who have been unable to conceive, because of this lack of B12. A few were diagnosed early enough and after going on a gluten-free diet, they conceived and gave birth successfully.
Remember that coeliacs make up one in a hundred of the population. The incidence is higher in the Irish, Askenazi Jews, Italians and some from West Africa. Some have said that coeliac disease is linked genetically to sickle cell anaemia.
Hay Fever and B12
I’m not sure if there’s a link, but last night I had some superb liver at Carluccio’s and my hay fever seems a lot better today, despite the high pollen levels. Searching for “hay fever B12” does bring some results.
Exquisite Liver
I was in Carluccio’s in Upper Street yesterday and had the most exquisite liver with onion jam and polenta. It is a special this week and I’ll be going back to get another dose of B12.
Nicole Kidman and Infertility
On my travels yesterday, I caught a headline on somebody else’s Metro, detailing Nicole Kidman’s struggle with infertility. The full story is here.
I hope she’s had her B12 levels checked. I’ve met several female coeliacs, who had all sorts of problems with carrying a baby. You just need the B12 to create a hPregnancyealthy foetus. There’s a lot of stuff on the Internet and this post is quite detailed.
If I look at my family and particularly the male line, which probably carries my coeliac genes, instances of any women giving birth are rare.
The Anonymous Widower 