Biopsy Results

[Debra]

Well, my liver biopsy results are in and my case is unconfirmable. The only evidence that I have trouble with fructose is the fact that I feel remarkably better and have a higher, more consistent energy level, no more constipation and no more hypoglycemia when eating very low levels of fructose. And even more compelling my liver enzymes are significantly reduced!! So this is an interesting study for me on the limitations of our knowledge about the human body and nutrition. If I feel this much better without fructose in my diet, I can only guess at what a dramatic difference it is for the rest of you. Well, I plan to eat low fructose for the remainder of my life. I am so thankful to have found a way of eating that really works for me. Thanks to all of you for your support!

[meaniejean]

Debra,

I have been meaning to comment for awhile now. I just wanted to say that I am glad you found a diet that works for you. It can be so hard to stick with it when the docs can't confirm a problem.

Have you looked into mitochondrial disorders? Did the biopsy also look for FDPase deficiency?

Best to you and your continued to health,
Sandra

[Debra]

Hi,

Thanks for the reply. I just saw my GP yesterday and she feels that HFI is the correct diagnosis even if the enzyme tests were unable to confirm the diagnosis at this time. She felt that the remarkable drop in liver enzymes and abatement of all my symptoms is sufficient scientific evidence. She referred to this as evidence based medicine. I know I will eat a low fructose diet forever because I feel consistently wonderful on this regime. I am encouraging both my sons to folow the diet and I am learning to bake for them. I am using a mix of glucose and splenda when I bake.

[Tammy]

Congrats on getting your dr to recognize this for you.

But, Splenda. Not a good idea. Splenda is Sucralose which is derived from sugar. Dr Tulans site lists it as tolerated depending on purity. Most every other kind of sugar he has listed on his site this way is fine for Regina. She handles more types than some other HFI'ers. But she can't do Splenda. Makes her very sick.

Try baking with dextrose. Things end up being not quite as sweet as with regular sugar, but she likes it better that way anyway.

Maybe Splenda will work for you, but just keep it in mind.

[meaniejean]

I second Tammy on the Splenda/sucralose. We thought we would go ahead and give it a try. It wasn't as bad as a sucrose reaction, but I definitely had kidney pain and Calvin had a lot of stomach pain the next day.

I love baking with dextrose. I especially love that you can use it in powdered sugar recipes or add extra water and use it in place of granulated sugar. I also prefer the very subtle sweetness and often add less than what the recipe calls for.

Happy cooking!

[Debra]

Thanks for the advice!! I now bake only with glucose and I love it!!

[Claudio]

Hello, I'm Italian and I hope that you will understand me because I am translating with google! I am also intolerant to fructose and my liver biopsy did not confirm, but when I ate the fructose was very bad. Today there are about 8 years of the fructose-free diet and I feel much better. I have told the doctors that it is a rare disease, perhaps our appearance has not yet been studied and therefore the only solution is to not eat fructose as the people that this intolerance was diagnosed by biopsy. bye

[colormist]

Ciao Claudio e benvenuto!
Google ha fatto un ottimo lavoro di traduzione inglese, così sto cercando di tradurre in italiano. Penso che se si sente meglio essere fruttosio-free, quindi si potrebbe avere ragione e che i medici potrebbe essere sbagliata. E 'possibile che il gene non è stato ancora catalogati. Questo potrebbe essere il motivo per il vostro biopsia non ha confermato una intolleranza al fruttosio. Non sono sicuro, però, perché la mia diagnosi era un genetico (sangue) di prova.

Vorrei che ci fosse qualcosa che potremmo fare per la barriera linguistica. : (
Penso che tu sia il nostro primo italiano! Questo è molto eccitante!


English translation:
Hello Claudio and welcome!
Google did a very good job translating to English, so I am trying to translate to Italian. I think that if you feel better being fructose-free, then you might be right and the doctors might be wrong. It is possible that your gene has not been cataloged yet. That may be why your biopsy did not confirm an intolerance to fructose. I'm not sure though because my diagnosis was a genetic (blood) test.

I wish there was something we could do about the language barrier.
I think you are our first Italian! This is very exciting!

[ukbill]

I once found a web site for HFI in Italian!

I think the link if from Dr Tollan's site if I remember right?