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Children diagnosed, how to start, frustrated

  • Heidi
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7 years 6 months ago #65 by Heidi
Heidi created the topic: Children diagnosed, how to start, frustrated
My 12yo and 5yo sons were diagnosed last week as fructose/sucrose and lactose intolerant. I was given a list of foods to avoid by the doctor and sent on my way. I have spent the last several days trying to figure out what to feed them and I am getting extremely frustrated. We were heading towards a vegetarian lifestyle and now that seems to be completely derailed. Part of my frustration lies in the fact that the lists of foods to avoid seems to vary depending on the source, (though I must say that the list provided on this site gives me the most hope). For example, the GI's list says peanut butter with no added sugar is ok, the list here says no. The GI's list shows in one category that all beans are to be avoided but under another heading it says that all beans (except soy) are ok. His list also says no soy beans or soy sauce but that tofu is ok. I'm confused. He also told me that all foods containing fructose/sucrose are to be avoided, forever and that my kids can never eat any fruit of any kind again and limited vegs. But when I found this site I saw that after a period of strict avoidance, foods can be added back in one at a time to test for tolerance. He didn't indicate anything such as this which also has me upset.

I guess I'm wondering how does one go about this statement on the "Healthy diet despite fructose malabsorption" page...
"As has been described in "Diagnosis: Fructose malabsorption" it will be possible to start to normalise the food intake again after the first few weeks. This means that small amounts of fructose can be eaten and the amounts can slowly be increased. From then on it will be possible to re-introduce certain types of fruit again and thus supply the body with some vitamins and fibres."

When I click the link in that statement I just get directed back to the page I'm already on. I really need to figure out how to do this "intestine rehabilitation". Is there any more information on how to do this and what foods to eat during this period? I was pretty upset to discover that something like this is possible and that the GI never mentioned it, he just gave my kids a life sentence.

Sorry to sound so desperate but after a week of eggs, chicken and crying kids I guess I am.
tia
Heidi

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7 years 6 months ago #66 by Zeke
Zeke replied the topic: Re: Children diagnosed, how to start, frustrated
Hello!

Well thatäs a lot of questions...

Topic: "For example, the GI's list says peanut butter with no added sugar is ok, the list here says no."
pewanuts are deifnetly not okay, 'cause they do have a high amount of sorbitol.

Topic: all beans are to be avoided
Yes, that#äs right. Mostly 'cause they contain oligosaccharids which cause bloathing, and that's not the best when you're intolerant

Topic: becoming a vegetarian and beeing fructose intolerant
don't think so ;-)

Topic: Tofu
I can eat it, but some say they don't... so maybe you have to test it yourself!

Topic: foods can be added back in one at a time to test for tolerance.
Yes that's true. There are studies that show, that a strict fructose free diet makes the intolerance worse. Re-introducing fructose in small amounts - sounds paradox - helps a lot. But you have to listen to your body and don't overdo it.

Do you kids really have fructose AND sucrose intolerance? Or just fructose intolerance?

okay, that's all for now ;-)

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7 years 6 months ago - 7 years 6 months ago #67 by Heidi
Heidi replied the topic: Re: Children diagnosed, how to start, frustrated
Thank you for taking the time to answer, that was all very helpful. I have removed peanut butter from both kids and wheat from the 5yo who the GI said is severely intolerant whereas the the 12 yo he said was mild to moderate. I think I will pull wheat from him as well but I'm trying to give him some time to get used to the fact that there will have to be restrictions on his eating. He was angry and upset, which I can totally understand, but he is beginning to feel better about this now and isn't as resentful as he was at first.

As far as the diagnosis...when we scheduled the testing I was told that it was a fructose test, but when they both failed the GI wrote the script for each of them "fructose malabsorption needs to follow a fructose/sucrose restricted diet". He did say that I would need to be very strict with the 5yo and "him, not so much" referring to the 12 yo. I do plan on trying table sugar for tolerance after a while. I'm happy to hear that total avoidance of fructose containing foods is not necessary.

I am trying to find information on intestinal rehabilitation. I haven't been able to find anything about it and a call to the GI led nowhere. I asked for a referral to a nutritionist but I was told they don't really offer that (Children's Hospital! really!?).FODMAPS looks interesting and I would like to learn more about that but I'm not sure how to go about that.
Last Edit: 7 years 6 months ago by Heidi. Reason: clarify diagnosis

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