Fructose intolerance - fructose malabsorption - anyone have any experience of this?

[damnitdamnit]

My 3 year old daughter has fructose malabsorption and She has been following a low fructose diet for about 18 months now. Information on the diet (fodmap)and opportunity to share what works and doesn't seems non existent (apart from a couple of websites) and even my doctor and dietician seem uninformed about the condition. Just wondering if there are others on here with this or whose children do and if anyone would like to share information on what works for them etc..

My kids have a different kind of gastric malabsorption, but we have a lot of overlap in terms of its impact, particularly the trytophan issues and everything poo related. PM if you want to talk about any of that.
Alternatively Hedra's kids have it and she blogs quite a lot about living with it as a family.
She also has a wiki page about it
hedra.pbworks.com/w/page/11325076/FrontPage
Well done on getting your dd diagnosed so young. With so little information out there it can be really hard to achieve.

Thanks I will take a look.

damnitdamit- hi. Just wondering how you're managing with the diet and what diet you are actually following. My nearly- 7 year old son was diagnosed Feb 2012 and we still struggle getting a tolerance level and are floundering a bit. The dieticians were initially helpful but their advice is different and my son's symptoms, while lessened, haven't gone. There seems to be a lot of research and info on Australian sites but our dietician said we shouldn't cut out wheat. How's it working for you?