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No, I haven't and I haven't heard this from anyone else.
It is easy to blame ailments on CML or a response to TKIs. And while this is often right, and sometimes very serious, it's not a catch-all. If we hadn't been diagnosed with CML, we'd still pick up illnesses, rashes, muscle and joint problems. I don't meant to dismiss any of these problems and certainly it's worth getting checked out as they could be the result of CML or it's treatment - but it's not always the case.
Has anyone tried cutting out wheat to see if it stops their diarrhea?
Regarding diarrhoea, I experienced this - or at least "urgency" - while I was on imatinib. Usually a few hours after taking it. I did not experience it before and I have always eaten wheat. Indeed, I found that a starchy diet - including wheat - significantly reduced my imatinib side effects.
My side effects also generally diminished over time, especially "urgency" (which eventually went away completely) and that I believe is the experience of the majority on imatinib - the body takes time to get used to it. There are some, of course, who unfortunately don't see much of a reduction in side effects. That doesn't mean that a change in diet won't help you - we are all different so it might.
As for cause, I have never heard of any connection between diet of any kind and a predisposition to CML. The only causative factor I am aware of is high doses of ionising radiation, and to my knowledge the only group of people who have been shown to fall into this category are survivors of Hiroshima and Nagaski. Otherwise, there are no known causative factors. It's just bad luck - although nowadays, that is tempered by the fact that there are fantastic therapies available which work incredibly well for the vast majority.
Thanks Richard. Have been on imatinib since June and had terrible problems from the start. Was told it was side effect of treatment. However had macaroni at lunch one day followed by urgent need and wondered if there was a connection. I cut out wheat and have had normal movements since. Stomach pains have gone and swelling is reducing Dailly. My knees and ankles are more flexible. Doctor agrees it wheat intolerance. I just thought it might help others if I shared my experience.