A question for Maz , hoping you can help .

[maestromaverick]

Hi Maz , was wondering if you could ask Prof Harrison about this . Following my diagnosis of PV I then devolved IBS , which is so horrible at the moment . Am on Ruxolitinib but wanting to query IBS diagnosis as after looking for help with IBS have been told that because I'm of slight build , have occasional high liver counts , failed to have children , osteoporosis , PV and tiredness its more likely I have Coeliac disease than IBS . Would like to know if I have justification in asking my doctor if I can have blood tests for Coeliac or am I just being paranoid . Nothing I've been given for IBS has worked . Its really getting me down . Hope you can help Maz and sorry to bother you .

[Twinkly]

I have these problems with my digestion too. And I'm on the same drugs as you ,but much older ..I know it sounds amazing but if you take a fibre in a drink it helps with IBS..

Try. Benefiber. It's a white powder ,taste less ,made by Novartis at Horsham ,rh12.5ab ...

Put it in any drink .it just works to make you comfortable inside ..it's gluten free too.

Hope this helps you ..twinkly ...xxxx

[babbittybumble in reply to Twinkly]

Hello,

If it is Coeliac then you must have a Gluten free diet , so the right diagnosis is really important, It is surprising how many foods contain gluten, and eating these can make you very unwell Ask your Doctor to confirm IBS or Coeliac the wrong diet can cause many problems Bye

[Hidden]

If you think you have coeliacs, do not cut out wheat just yet. Speak to your doctor, get the tests done and then wait. The tests will come back negative if you cut out gluten at this stage.

[maestromaverick]

Thank you to you all . Am in a nightmare scenario at the moment as being underweight am on a high fat diet . For the last few days have stopped my normal cheese spread sandwich for tea but still having crisps and chocolate roll which probably contain gluten but am feeling a bit better without the bread , butter and cheese . But I know my weight has already started to d rop , so I'm really concerned and hoping Maz will get back to me . Cannot carry on as I am , the pain has been so bad for the past two weeks and the peppermint oil capsules are no longer working . Just about had my fill of doctors and hospitals , even a good nights sleep would help . Sorry to whinge , its not normally like me as I'm usually an optimist but just so fed up . Will try your suggestions and am sograteful for your help .

[Paul42]

Hi

I too have high liver counts, not extreme or anything just higher than usual. I take 20ml twice a day of Aloe Vera juice to try and help, i dont know if it does or not but my liver counts,whilst still elevated are lower than they where by some margin a year ago.

Aloe Vera juice is also supposed to be good for IBS, so may be worth looking into. I wouldnt start without asking your GP or consultant as it may intefere with Ruxolitinib so worth asking first.

I take a lot of Vitamin C daily and at first found that gave me a lot of issues bowel wise but since i started the aloe vera juice thats been ok.

Paul

[Twinkly]

Hi it's me again , I bought a steamer ,so I can steam vegetables ,to keep the taste ,your diet of spread cheese white bread and crisps ..is not really doing you much good , you need healthier options ,mashed potatoes carrots swede ,cabbage broccoli ,cauliflower .not onions at first ,,or tomatoes ,if you eat chicken ,cook a whole one it will give you many meals ,or buy salmon in portions ,,eat one a day ,instead of fish fingers ,even rice with egg ,is a good alternative ,and so easy to prepare and quick ,,filling gives you gentle comfort ..a warm full feeling is better than the grating empty feeling ,to help you sleep.eat small warm snax every 3 hours ,,even soup ,it gives your tummy less work and you more energy ..try my fibre option as well put it in drinks ,don't touch cans or fizzy junk drinks they really irritate sensitive bowel issues ,,,these things do help you maybe need to shop and plan a bit ,,but if you do you feel more in control of your life ,,lots of luck . Honey . Make a change , It will be worth it , Twinkly. Xxx

[maestromaverick]

Thank you again , but have given in to the pain and tiredness and am at the doctors tomorrow . Its not my style as I try to keep well clear of docs as every time I go they find something else and its either time in hospital (which I loathe as just want to be at home with my cats ) or another pill to take . But thankyou all for your suggestions which I have written down . x.

[Mazcd Partner MPNVoice]

Hello I have passed your question to Prof Harrrison I will let you know what she says as soon as she replies. Best wishes, Maz

[maestromaverick]

Thankyou Maz . Unfortunately it has now become a secondary issue as following x ray of my painful right wrist , have been told a tumour has eaten halfway through one of the bones and I go into Lincoln County Hospital for assessment tests and if operable onto either Birmingham or Leicester . PV couldn't finish me but think I'm in for a life challenge now .

[babbittybumble]

Hello, So sorry you are having all these problems .Take care. Bye Gill