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Since my Allo Stem Cell Transplant in 2009 I have developed food intolerances. I can’t eat wheat, salad and various other foods. If I do I get terrible tummy pains and trapped wind in my chest which lasts for hours and keeps me up all night.
My consultant has said that he doesn’t think there is a link with the transplant, even though I didn’t have it before. I’ve been referred to a gastro consultant and I get the feeling he thinks it’s all in my head. My GP has prescribed Colpermin, which helps a little and I’ve tried everything else you could think of and nothing sorts it.
I’m in touch with a couple of people who have both had auto SCT and are both experiencing similar symptoms. I’m now wondering if it’s the conditioning chemo they give before the transplant rather than the transplant itself.
I would be interested to hear if any other post SCT patients are experiencing tummy troubles too.
Hi jo.I started to develop stomach problems 12mths ago, I'm 3yrs+out of an auto sct. I think it goes with the territory.Has your gastro con mentioned a camera investigation?.
Thanks for your reply. I had an endoscopy over a year ago and they found nothing (which is what I expected) They have offered to do another, but they are not keen on the idea as we don't think it's going to show anything - it just seems to be food intolerances.
I had a really bad night last night and all I had was eggs and oven chips!
It's just they dont acknowledge that there is any possible link with the treatment, so I'm doing my own research that I can then go back to them and say - "well actually...."
Any more replies from post SCT patients would be appreciated, even if it to say that you've had no problems.
I had an auto in 2000 and an allo in 2009.I've not had any trouble with food intolerances as such but my taste has changed.When on the chemo and steroids I lost the taste for sweet stuff and whereas this did happen with the auto it did return after treatment but this time it hasn't and I still don't like sweet stuff and really don't like chocolate!I have only just stopped the cyclosporin (last one today!!!) so wether this will make a difference we'll see.
Take care. Kaze. x
Thanks for the reply and sorry for the delay in answering you.
I'm interested to hear you don't have tummy troubles, I find that promising.
I was amazed that you're still on cyclosporin, I was only on it for a few months but my donor was 100% match, so I suppose that had something to do with it. I bet you're glad you're finishing it. I stopped once and had to start again as the GVHD got bad again, so fingers crossed for you.
I can't eat chocolate either, it tastes foul. I haven't eaten chocolate for over two years now. They've said that my taste is probably as good as will ever get now also i've lost my sense of smell, apart from one fowl smell I get that I can'de describe but burgers, perfume, petrol, coffee and some other things all smell the same.
Take care and thanks again.
Hi Sleepy Jo,
I was doing some research & so far not to happy to see you still have problems so far down the line. I just had my transplant about 6 weeks ago. Certain foods like yogurt, New England clam chowder, pizza, last week it was a small piece of cheese or a small piece of chocolate & last night I have no idea, maybe the salad I ate was too big even though I had smaller portions of lettuce before. Anyway everything goes down fine then 3-4 hours later I'm throwing up. I figured some part of my digestive tract just will not except certain foods. I cannot eat sweets at all. I'm afraid to try adding any new foods to my diet & afraid to go away for a full day or weekend since I have to eat every couple of hours (small meals) So far I am living on toast, scrambled eggs, baked potatoes, chicken & anything bland. Wheat seems to be ok, I don't like plain bread it needs to be toasted & more dense breads. Whatr other foods are you experiencing problems with. Good luck & thnksa for the info.
Sorry to hear you're having eating problems. I eat very plain food now, anything 'interesting' just isn't worth the risk.
I had terrible problems with sickness for the first couple of months and ate very little. This did improve slowly and my taste improved a little after time, but has now stablised and a rather disappointing level.
It would be easier to tell you what I can eat rather than what I can't! I eat chicken and fish, boiled and jacket potatoes, carrots, sweetcorn, peas, eggs (not fried), rice, ham (but only the cheap nasty stuff, anything decent tastes foul) plain nuts (not roasted), rice pudding.
I can't eat any red meat, fried food, onions, crisps, chocolate, sweets, green veg, salad, most friut, yogurts and anything with gluten (however little). I can't drink fizzy drinks or alcohol.
My advise is stick to plain foods. I tried cutting out certain things until I found what caused the most trouble and my 'can eat' list kept getting smaller!
My consultant suggested keeping a food diary and this helped to work out what caused me trouble.
If I go out anywhere, I always take food with me (usually a wheatfree sandwich or a hard boiled egg) and I have taken to carrying a bag of plain nuts in my handbag and in the glove box for emergencies. I have found that eating late in the evening is a bad idea and try to eat early.
My GP prescribed metronidasol which I've been taking since Tuesday and although I'm afraid to say it, seems to be helping, things aren't perfect but do seem mildly improved.
I'm sure you will find more foods that you can eat as it is still very early days, but I would suggest only trying one new thing a day. It's very exciting when you find something new you can eat, but when I do, I end up eating it virtually every day until I get bored!
Take care and get in touch any time.
Hi, may I jump in here and say that daughter has been talking to HL patients world-wide for the last 6 years, one had an allo SCT a few years back, has a totally different blood group now and is also coeliac, so maybe things change that your Doc doesn't automatically consider?
Worth bothering them, I say!
My love to you all, I 'hope' daughter will be joining this select group in spite of the angst it will cause, including taking anti-rejection in liquid form (she can't take tablets- whooping cough as a tiny baby did that)
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