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oh, and that person also developed loads of freckles that they didn't have before!
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You are very welcome to jump in whenever you wish especially as you always have some interesting information.
As I've mentioned before but just in case you've missed it - I've had Allo SCT and my blood group also changed from O+ to A+ (which I have always thought a bit freaky)
I'm interested to see that this person your daughter has mentioned has deveoped coeliac, although I've been dianosed with it I ceratinly have a gluten intolerance even if I don't have coeliac. I had already stopped eating wheat for a few months when I finally got to see the Gastro consultant and he told me that I would need to eat wheat for a couple of weeks and then they could do a blood test to check (I don't think so!) The only benefit that I can see of me being diagnosed would be that I could get some foods on prescription.
I seem to have several food intolerances and had another really bad night last night (I knew it was too soon to say the metronidasol was working!) I finally went down stairs at 4.15am so that I could sit up and had to be up at 6.45am for work - I reckon I managed a little over 2 hours sleep in total, which is never good especially as the GP signed me off work last week with exhaustion because of my tummy troubles interupting my sleep.
I'm due to have another endoscopy before I get to see the gastro consulant in July but I don't expect them to find anything. I will, however tell him that there are others with similar problems as he confessed to not knowing much about SCT. I just want all these problems to stop as they've been going on ever since the transplant which was over two years ago now.
I read of a coeliac who's condition was cured following a SCT for Lymphoma so it seems reasonable to assume that the opposite is also possible if the donor is a sufferer.
I'm also fascinated to hear that this person you speak of has more freckles now, I wonder if their donor was a red head.
I keep my fingers crossed that they find a suitable donor for your daughter. I had to take cyclosporin in liquid form for a while and have to say it was very unpleasant.
Thanks again for the info. I do read your blogs and like to keep up to date with how your daughter is getting on. It sounds like she's having a fab time at the moment (health aside)
Love coming back at you!
Jo, she is dreading the cyclosporin, I looked it up in one of my medical books and it actually says it needs to be taken diluted with something like juice to make it palatable! For that book to say that, it must be pretty yuk!
She's just had approval for a new drug from Seattle which her Prof can get on compassionate grounds, so I'm off up to take her in next Tuesday as her normal folk taking her are both busy working....what it is to be retired, lol! This drug has to be joined by anti-gout medication which she's had before, says it's like drinking moisturiser......poor lass.
'bumping' for Mygirl
I have had Chemo and Arsenic treatment prior to having my stem cell transplant, and by no means where the 2 previous treatments as bad as what I am going through now with regard to eating problems.
Had my SCT mid december 2011 and eating ceased as expected for about two weeks, but as time has progressed I have an intolerence to many food types. However I still can't smell the difference between bread, bacon, chicken or fish. All food comes across as one horrible smell that makes me want to be sick.
I can drink a few beers, water, coke without too much hassle, but food is a big problem. I find the smell of wheat based products the worst.
At the moment I am surviving on jordan crunchy nut cereal with milk for breakfast, some nestle nutritional shakes and very plain food (ie steamed brocoli etc)
It's horrible, and so far down the line (3 months now) to still be having these issues, never had with two previous treatments.
It's just like when you a toddler and what you liked last week can change today, as if the brain interprets the sensing differently.
My hair on my head is now starting, just like a baby sloth, so lets see what the next month brings.
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