We’d love to know what you think about our new site.
My saved pages
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)
oh, and that person also developed loads of freckles that they didn't have before!
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.
If you have any questions about Macmillan, or would like to talk to someone about cancer, we have a team of experts who can help.
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ.