So took the advice of CUK and referred myself to talking therapies. Their response use CUK's website!!
Why is there no help out there, unless you are me you will not understand how this condition is making me feel.
Yet again I have been told i need to take my own food to something where 1) I was told I would be catered for and 2) they've had a years notice to sort it out. Well miffed as I'd given them as much information as possible, and now they're excluding me because of my MEDICAL diet.
It's not my fault, I didn't ask for it, I don't want it, and it's not a lifestyle choice..but it's not even considered.
So frustrated right now and feel very excluded from everything, How is anyone supposed to stay positive when even with a years notice they still can't cope with feeding me.
Try and help yourself and end up with useless information, I don't know what these people think I have been doing for the past 9 months, sitting on my backside and not taking any notice of how I feel or what's out there to help, what a completely useless waste of time
Tuesday 30 July 2013
Wednesday 17 July 2013
Forgot to mention..........
Forgot to say yesterday....my Vitamin D levels came back normal yay!!!
Just the TTG levels now to sort out, wonder if they'll be lower than 28? Hope so!! I'll let you know in due course.
Just the TTG levels now to sort out, wonder if they'll be lower than 28? Hope so!! I'll let you know in due course.
Monday 15 July 2013
Do I feel better...mmm....not sure!
Before you all panic, no, I haven't given up on the GF diet. I can't and I won't, this will take you back to the 'heart v head' argument that I posted about earlier. I know a GF diet is the only way I will stay healthy and full of energy, but noone said it would be easy.
I guess what I mean with the title is I'm not sure I'm less stressed, but I have removed the two big stressors that were coming up this month.
On Saturday I did attend the Group BBQ, having spent most of the day making sure I had loads of things to eat to take with me (including some Bratwurst to cook.) When we arrived, to my delight my chef friend was manning the BBQ, he had read up on Coeliac Disease (result!!) and was aware of the cross contamination and had provided separate utensils to use with my food (I told him I wouldn't need a separate BBQ because of a wonderful product, foil trays which allow the flames and smoke to come through and cook the food, but it keeps it off the grill!! They come in packs of 10 in Lidl.) although if I'd asked he would have provided one. The only drawback was it was so hot on Saturday that by 8:30pm I had had enough and wanted to go home (my asthma was playing up, and I was finding the air like trying to breath treacle.)
Today, we had our celebratory get together for the 60th Anniversary of the School Crossing Patrol service (UK) Because I had been busy with the food for Saturday, there was a lot left in the fridge that I was able to just pack into my coolbag and take with me. I had a good time, and was presented with a commemorative badge/medal and a certificate. There will be lots of embarrassing photo's in the local paper next week too!! They did a fun shot of all of us on the Zebra crossings outside the council offices taking off The Beatles Abbey Road album cover......there were about 19 Lollipop people across both the crossings!! I actually enjoyed myself as the food here was secondary, and it managed to happen fairly inconspicuously which was rather nice.
Food is still stressing me out, but I do feel a little better. Maybe my complete breakdown the other day over an order of food that didn't quite work, might have got some of it out of my system now. It's just because I think this is the first time I have ever had to deal with the BBQ season, and things just having food rather than parties.....if you see what I mean.
DH did take me out for Dinner on Friday at our local Coeliac friendly restaurant, and on Monday the local Coeliac group have arranged a 3 course lunch for all of us, so that should be good. Things are improving, but I'm not naive enough to believe that this is going to be the end of finding this difficult. Over 40years of being able to eat anything, is not going to vapourise overnight, this is going to take time, but I want it sorted now.
Yes I do feel better than I did a few days ago, but I know it won't be the last or only time, be patient with me.
I guess what I mean with the title is I'm not sure I'm less stressed, but I have removed the two big stressors that were coming up this month.
On Saturday I did attend the Group BBQ, having spent most of the day making sure I had loads of things to eat to take with me (including some Bratwurst to cook.) When we arrived, to my delight my chef friend was manning the BBQ, he had read up on Coeliac Disease (result!!) and was aware of the cross contamination and had provided separate utensils to use with my food (I told him I wouldn't need a separate BBQ because of a wonderful product, foil trays which allow the flames and smoke to come through and cook the food, but it keeps it off the grill!! They come in packs of 10 in Lidl.) although if I'd asked he would have provided one. The only drawback was it was so hot on Saturday that by 8:30pm I had had enough and wanted to go home (my asthma was playing up, and I was finding the air like trying to breath treacle.)
Today, we had our celebratory get together for the 60th Anniversary of the School Crossing Patrol service (UK) Because I had been busy with the food for Saturday, there was a lot left in the fridge that I was able to just pack into my coolbag and take with me. I had a good time, and was presented with a commemorative badge/medal and a certificate. There will be lots of embarrassing photo's in the local paper next week too!! They did a fun shot of all of us on the Zebra crossings outside the council offices taking off The Beatles Abbey Road album cover......there were about 19 Lollipop people across both the crossings!! I actually enjoyed myself as the food here was secondary, and it managed to happen fairly inconspicuously which was rather nice.
Food is still stressing me out, but I do feel a little better. Maybe my complete breakdown the other day over an order of food that didn't quite work, might have got some of it out of my system now. It's just because I think this is the first time I have ever had to deal with the BBQ season, and things just having food rather than parties.....if you see what I mean.
DH did take me out for Dinner on Friday at our local Coeliac friendly restaurant, and on Monday the local Coeliac group have arranged a 3 course lunch for all of us, so that should be good. Things are improving, but I'm not naive enough to believe that this is going to be the end of finding this difficult. Over 40years of being able to eat anything, is not going to vapourise overnight, this is going to take time, but I want it sorted now.
Yes I do feel better than I did a few days ago, but I know it won't be the last or only time, be patient with me.
Tuesday 9 July 2013
Even more good news....well to me anyway!!
Rang the Docs again today to ask the question about my B12 jabs. I have one booked for August, but I have been told that because my levels were normal last week and last time I had a lot of jabs the levels went very high that I can now have my B12 jabs once every 6 months instead of once every 3 months, so I've gone from 4 jabs a year to 2 wooohooooo!!! That's what I call an improvement.
This is looking good for my TTG Levels...but I shall just have to wait to find out.
All these positives are really good, now it's just a case of seeing if I can cope with a large BBQ on Saturday evening amongst lots of people. It's interesting how many people are asking questions because I've been up front about how difficult life can be sometmes, I had a long conversation with someone yesterday about how Coeliac disease to me, anyway, was a complete shock and that because I showed no symptoms the control of my diet has a lot to do with will power, which is quite difficult to explain:
I can walk past a Bakery and know that I could eat anything in the window, and know that, outwardly, any way, it wouldn't make me ill. My head however is telling me that if I do that I will damage my insides and ultimately will make myself ill as I will be unable to absorb the vitamins and minerals from any food I eat and the anaemia will eventually come back. So my heart (I could murder a belgian bun right now) and my head are constantly arguing with each other, and I have to make sure that I am listening to my head and not my heart...........see what I mean, clear as mud that was, wasn't it!!
Anyway the good news is my levels appear to be stabilising, which is suggestive that a) I am sticking to the GF diet b) my gut is starting to heal and c) that maybe coeliac disease might be tough but it can be done......just don't get too cranky with me when I have an off day as I am craving everything I shouldn't be eating.........French Bread is the one I am missing most, along with Jam Doughnuts!!
Onwards and upwards.
This is looking good for my TTG Levels...but I shall just have to wait to find out.
All these positives are really good, now it's just a case of seeing if I can cope with a large BBQ on Saturday evening amongst lots of people. It's interesting how many people are asking questions because I've been up front about how difficult life can be sometmes, I had a long conversation with someone yesterday about how Coeliac disease to me, anyway, was a complete shock and that because I showed no symptoms the control of my diet has a lot to do with will power, which is quite difficult to explain:
I can walk past a Bakery and know that I could eat anything in the window, and know that, outwardly, any way, it wouldn't make me ill. My head however is telling me that if I do that I will damage my insides and ultimately will make myself ill as I will be unable to absorb the vitamins and minerals from any food I eat and the anaemia will eventually come back. So my heart (I could murder a belgian bun right now) and my head are constantly arguing with each other, and I have to make sure that I am listening to my head and not my heart...........see what I mean, clear as mud that was, wasn't it!!
Anyway the good news is my levels appear to be stabilising, which is suggestive that a) I am sticking to the GF diet b) my gut is starting to heal and c) that maybe coeliac disease might be tough but it can be done......just don't get too cranky with me when I have an off day as I am craving everything I shouldn't be eating.........French Bread is the one I am missing most, along with Jam Doughnuts!!
Onwards and upwards.
Saturday 6 July 2013
A bit of Good news
I've had some good news this week and hopefully it will get better by Friday. Yesterday I was told that my blood test as part of my annual review had come back telling me that my B12 levels are stable, but my Folic Acid has dropped low again, so I am back on tablets for this for 3 months. I'm hoping that this means I can stop having the B12 jabs, as I hate them, so, I am really hopeful (might be a bit premature though!!)
The full blood count also came back normal.
I am awaiting results for Vitamin D to make sure those levels are also at a normal level, and I am still awaiting the results of a blood test that was ordered after I had been seen by paramedics in June (apparently that should be back by Friday)
So as I said hopefully, by Friday I shall have more good news, so keep your fingers crossed.
I am due to have my TTG levels checked in September, and then obviously my Folic Acid levels will need to be checked again in October.
Friday 5th July:
I have been told that the blood test ordered in June has come back normal, which was a huge relief. They were checking to see if I had the gene that makes blood clot more readily than normal, to see if I was at even higher risk of DVT than I was already. It's taken a long time to come back, but at least I now know.
Vitamin D result is likely to take another couple of weeks, but I'm hopeful that will come back normal too.
As for the B12 jabs, well that requires another phone call, as I forgot to ask again!!!
But overall it's not looking too bad.
The full blood count also came back normal.
I am awaiting results for Vitamin D to make sure those levels are also at a normal level, and I am still awaiting the results of a blood test that was ordered after I had been seen by paramedics in June (apparently that should be back by Friday)
So as I said hopefully, by Friday I shall have more good news, so keep your fingers crossed.
I am due to have my TTG levels checked in September, and then obviously my Folic Acid levels will need to be checked again in October.
Friday 5th July:
I have been told that the blood test ordered in June has come back normal, which was a huge relief. They were checking to see if I had the gene that makes blood clot more readily than normal, to see if I was at even higher risk of DVT than I was already. It's taken a long time to come back, but at least I now know.
Vitamin D result is likely to take another couple of weeks, but I'm hopeful that will come back normal too.
As for the B12 jabs, well that requires another phone call, as I forgot to ask again!!!
But overall it's not looking too bad.
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