confusion: hfi progession to adult?

[arica]

hi everyone,

i posted my initial intro & questions on the 'safe ingredients; lactose, fructose, gluten forum' but forgot this question:

so all or most of u were diagnosed as infants? i'm confused. that in order for it to be hfi u have to have it when u were born. if it is fatal undiagnosed, how does 1 survive it not knowing they have it for over 20 something years?

does the disorder progress & if so, how does this work. or can u loose the ability to break down fructose over time...& eventually become hfi.

i apparently cannot tolerate any level of fructose now let alone sugar...don't know about dextrose tho.

i have gotten progressively worst over the years. i'm 52 & the hypoglycemia was severe before i had my daughter some 19 years ago & i ddn't connect the other symptoms numbness, kidney pain, disorientation from sleep, sluggishness, etc to fructose until here recently about 3 years ago.

could someone please explain the 'life span' nature of this beast (hfi)?

[arica]

on the poll, the question should read or 'were 1st aware of your symptoms of hfi'?

thanks everyone.

[ukbill]

HFI is from birth to death there is no "getting better" as such in that we will never be able to eat sugar or fructose containing fruits or vegetables.

We survive because most of us do not like the taste of sweet foods.

For some of us we are able to live on with quite a high fructose intake level and continual pain and illness through out our lives. Generally we avoid the things that make us violently ill.

We can continue eating foods which are far too high in Fructose by balancing these out with high Glucose foods (or fast breakdown starches) however the damage to liver kidneys and eventually brain can and will be occurring.

We learn that sugar and sweet foods = illness and feeling so ill you would not believe. Or we should do anyway its our only real defense.

It is only fatal if parents keep feeding unsuitable foods to a baby / child before its old enough to choose its own foods or speak.

The name HFI etc has only been really known comparatively recently.

We just knew we dd not like any foods with sugar in.

It was much easier before the arrival of baby foods all of which are horribly sweet and processed foods which are all full of artificial or real sugars and sweeteners.

White bread use to be universally safe for example.. not now though

[arica]

ukbill wrote: [HFI is from birth to death there is no "getting better" as such in that we will never be able to eat sugar or fructose containing fruits or vegetables.

We survive because most of us do not like the taste of sweet foods.

For some of us we are able to live on with quite a high fructose intake level and continual pain and illness through out our lives. Generally we avoid the things that make us violently ill.

We can continue eating foods which are far too high in Fructose by balancing these out with high Glucose foods (or fast breakdown starches) however the damage to liver kidneys and eventually brain can and will be occurring.

We learn that sugar and sweet foods = illness and feeling so ill you would not believe. Or we should do anyway its our only real defense.

It is only fatal if parents keep feeding unsuitable foods to a baby / child before its old enough to choose its own foods or speak.

The name HFI etc has only been really known comparatively recently.

We just knew we dd not like any foods with sugar in.

It was much easier before the arrival of baby foods all of which are horribly sweet and processed foods which are all full of artificial or real sugars and sweeteners.

White bread use to be universally safe for example.. not now though ]

thank u very much ukbill. this is very helpful...it gives me some explanation...my generation did not have as much access to process sugar as the subsequent generation have & as a family, we tended to eat home cooked meals.

i do remember deciding not to drink soda by the time i was in 8th grade...i was kind of sickly & hated being sick...migraines & motion sickness in particular in addition to the sugar episodes; so i developed a keen interest in being healthy & not having to depend on the medical industry for my health...

at this point i may have a severe case of fm where i have to be on a hfi diet...(hope i am still welcomed here) or as u said, had enough glucose to compensate for the fructose...so the progression of symptoms come from the increasing damage to our brain, kidneys, liver & nervous system-neuropathy; very interesting. this explains a lot.
glad u folks are here .