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Post by sugarless on Sept 29, 2016 18:48:46 GMT -5
Does anyone know of any doctors that treat and diagnosis HFI? I have had HFI for 45 years and I have yet to find a doctor that doesn't think I'm crazy or one that believes it exists. I have only recently found out that there are other people out there like me and that I'm not a freak in a sugar filled world.
Any help would be GREATLY appreciated!! I live in Texas, but willing to travel anywhere for a doctor that really understands and know how to treat this rare disorder.
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Post by colormist on Sept 30, 2016 8:25:59 GMT -5
Hi Sugarless! The Baylor University in Waco, Texas is where they sent my DNA test to get my HFI diagnosis. You might have better luck at the Baylor College of Medicine. I'm not sure which doctors (specifically) to ask for though.
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Post by sugarless on Sept 30, 2016 12:02:27 GMT -5
Thank you, Colormist, and thank you for all your posts on different subjects. The information you have shared and just your experiences are very helpful and encouraging. After finding this sight yesterday, I told my family that I found my people. Having HFI is like living as an alien because no one understands it or truly believes it. I have never met another person with the same condition.
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Post by colormist on Oct 3, 2016 8:15:58 GMT -5
I know that alien feeling! If not for my brother showing the same food peculiarities, then I'm quite certain I would have had it much worse as a child. I can't imagine what my mom went through with my brother and I "they only eat these certain foods and will not eat anything sweet." And still they'd try to feed us poptarts and sugared white rice.
Let us know if you have any questions or if there's anything we might be able to help with!
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Post by ukbill on Oct 12, 2016 0:56:09 GMT -5
Rather than telling your Dr you have HFI tell them its Fructosemia they all seem to understand that condition.. its identical in every way. Welcome to the forum Yes I was amazed when I found this forum.. it has changed my life (for the better) because I though so long as I did not feel bad after a meal I was doing OK.. no i was not. I have since gone much harder towards zero Fructose and feel SOOOOOOOO GOOOOOOD  I still have a few of the gut problems that were caused by 45+ years of abuse feeding it far too much digestible fibre and fructose.. but 90% of the time if not 99% I am better than I have ever been in my whole life! Keep smiling and read some of the posts here.. the older ones sometimes got a little heated because there were a lot of very dangerous practices and quack ideas going round 10 / 15 years ago. |
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I still have a few of the gut problems that were caused by 45+ years of abuse feeding it far too much digestible fibre and fructose.. but 90% of the time if not 99% I am better than I have ever been in my whole life!