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Post by HFI Mom on Apr 8, 2012 21:28:30 GMT -5
Oh boy! I knew from my now 17 1/2 yr olds first few days of life there was an issue. Really bad colic, put on nutramagen, off breast milk, then at 3 she would throw up at all b-day parties. Trial and error, tears and funny incidents. (We dont search her room for drugs, or alcohol, or boys, lol but candy wrappers  . Drs would tell me no such thing. HA!Quacks!!! Finally a gastroenterologist sent us to UCLA Genetics and told me straight to my face: dont give her fructose youll damage her liver, she lacks the enzyme. Fortunately through lots of prayer and stringent label cheecking, were fructose free for years. Shes a terrific athlete (back flips- on a cheer team, 1st in state, and western region, national finalists) but would get grumpy after a hard work out, then I read here they can make her produce fructose- crazy!!! Who knew? One time she reacted to "ezekiel bread" I called manufacturer (ok raisins have Fructose live and learn) but they grow the yeast on high fructose corn syrup with "no cross over" I told the lady: THERES CROSS OVER!!! Oh man funny stuff. Love the site have it book marked. Thanks! |
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Post by HFI MOM on Apr 9, 2012 0:16:48 GMT -5
One more thing: those of you having problems getting your Drs to understand you, I empathize! It took us 17 yrs!! But heres where I found why possibly. HFI is genetic right? N. European and most Drs where I live in So. cal are not of N. European descent. Im not prejudiced thats not it, but my break throughs came when I researched sites by people in the UK & Australia of n. european descent. My kids Drs were Asian & Jewish. when i asked for a hydrogen breath test it was like Id ask them to sell crack! I think its maybe the whole hoof beats can be zebras not horses thing. drs of certain descent may look for sickle cell or other things this is well foriegn to them. i was so impressed by the UK and australia instead of a pill for depression they take fructose out of the diet! AMAZING!
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Post by charlie on Apr 9, 2012 5:11:59 GMT -5
Hi HFI mom,
welcome to the site, do join up fully and use all the facilities then, and let us know more on your history. Your daughter could join up too separately and let us know her experiences.
You are right, Australia especially do seem way ahead in dietary things, its slow here in the UK but I think with the NHS it does mean that all tests can be done deemed necessary as we don't have to pay for them unlike in other countries, but the dietitians to be honest don't seem to know much about the treatment and diet which is why this board is so great for ideas.
I like the searching for candy wrappers, I do exactly the same in Megs room, she only occasionally gets access to any but I certainly know when to start looking!!!!
Do feel free to ask anything, no matter how trivial, we have all been through it!
Charlie
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Post by ukbill on Apr 9, 2012 7:56:00 GMT -5
Yes i was amazed that converting body fat back into glucose also produces Fructose!
It explained a lot about why I got so ill when excersiseing..
We with hfi all seem to be slightly different in our likes and dislikes.
Just like everyone else we learn what is safe to eat and enjoy as young children.. luckily I learnt that sweet taste = sick + so ill I wanted to die. SO I avoid all sweet tasting foods..
Well that is not entirely accurate to me and everyone else normal cows milk is not sweet and yet it contains 4% lactose sugar so it is sweet only we don't notice it because we are so used to it.
I agree with Charlie there are several "side conditions" which while showing symptoms of HFI are not the full thing.
I met a young lady this weekend (a nurse actually) who has the same problem I have (and my Daughter) in that we are very slow at converting body fat back into blood sugar (even then It poisons me as well)
She can eat Fruit and vegetables so is not HFI but has to carry food around with her otherwise she can go Hypoglycaemic and pass out!
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ktfrlnd104
New Member
Mother to a toddler with HFI
Posts: 4
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Post by ktfrlnd104 on Apr 12, 2012 18:37:05 GMT -5
Could you let me know where you read the bit about exercise causing illness? I have a 13 month old diagnosed with HFI at 9 months of age. Imagine he will only be getting more active as he gets older.
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esmee
Full Member
gluten, lactose, fructose, histamine, and salicylate intolerant
Posts: 236
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Post by esmee on Apr 13, 2012 12:08:10 GMT -5
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Post by ukbill on Apr 14, 2012 11:53:09 GMT -5
I found the info while chasing down some info on HFI
I think it was from one of the links but I cannot for the life of me remember which at the moment I will try to find it again soon.
Think it was form a "link" page on the site here but several related documents down the train so to speak.
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. Drs would tell me no such thing. HA!Quacks!!! Finally a gastroenterologist sent us to UCLA Genetics and told me straight to my face: dont give her fructose youll damage her liver, she lacks the enzyme. Fortunately through lots of prayer and stringent label cheecking, were fructose free for years. Shes a terrific athlete (back flips- on a cheer team, 1st in state, and western region, national finalists) but would get grumpy after a hard work out, then I read here they can make her produce fructose- crazy!!! Who knew? One time she reacted to "ezekiel bread" I called manufacturer (ok raisins have Fructose live and learn) but they grow the yeast on high fructose corn syrup with "no cross over" I told the lady: THERES CROSS OVER!!! Oh man funny stuff. Love the site have it book marked. Thanks! 
