New member hello!

[cdalsass]

I just want to start by saying it is so nice to meet all of you. I was diagnosed with HFI this past year, and sadly it took 32 years for me to figure out that what was wrong with me was not taste bud related or psychological, as every doctor I spoke to seemed to believe. The internet really is an amazing tool for self diagnoses. (Also Wikipedia led me to this forum too!) I was tested by Baylor Labs in Texas, and the genetic test was confirmed positive. I find it so amazing reading all of your efforts in research that I have managed to find all of the foods that are HFI safe just by not getting sick by eating them over the course of my life. I am super happy to hear Smarties are safe, as they are my favorite candy! However, I have decided that I cannot live without garlic. I am Italian & I love it's flavor too much. My brother, who is 11 1/2 years older also has the exact symptoms, and although he refuses to get tested for fear of having his heath insurance rate go up for having a pre-existing medical condition, I am almost positive he also has HFI. I am sure all of you, just as I have, struggled to find out what was wrong with you, and continue to struggle to eat & drink with an HFI diagnosis, so it is really nice to know there are people to share the ride with. I look forward to getting to know all of you. Best, Christine

[julienc]

Welcome Christine!! I'm so glad you found this forum! I think it was Colormist who posted the link on Wikipedia. Yay for her!!

Your story is so much like mine and many others on here. I was finally diagnosed 2 years ago at the age of 30, and I also have an older brother with the exact same "issues". He has also decided to forgo testing for similar reasons. It just amazes me how we were able to navigate through life figuring out what foods made us sick. It has been so liberating to have a diagnosis and to be able to explain to others what I can and cannot eat and WHY!! (Oh, and my lab work also went to Baylor!)

Do you have any other siblings? Any who do not have HFI symptoms? Any other known family members with symptoms? What did your parents think growing up, with all of your food issues? Sorry if I'm being too nosy - I'm just so curious! My brother and I are the only siblings and the only ones with HFI. We both have 4 kids now between us, and they are symptom-free.

Again, welcome and so glad you found us!!

[colormist]

YES! I knew that Wikipedia link would pay off eventually!

I was self-diagnosed a little over three years ago. Took a couple months after I discovered my own diagnosis to be interrogated by a geneticist (who finally decided to amuse me and send my lab tests off to Baylor). My brother, who is 4 years younger, also has the same symptoms and refuses to get tested (for his own stubborn reasons) but believes he has it.

I love it when we find families with HFI.

And I'm going to second all of Julie's questions.

[meaniejean]

Welcome!

I don't know about you, but I beat myself up for years about not wanting to eat fruits and vegetables! I'd try to be "healthy," but I'd always end up feeling lousy! I wouldn't eat whole grains either. It all makes so much sense in hindsight!

I am not diagnosed yet. They thought I might have a close cousin of HFI - FDPase deficiency - but now we are not sure what is going on.

I also have a brother who has problems with fructose and my two little boys are also unable to tolerate fructose.

I'd also love to hear more about your experiences!!! Again, welcome! This board has changed my life!

All the best,
Sandra

[charlie]

I'm a firm believer in children know how to keep themselves healthy, a natural instinct we lose as we get older. You probably somehow intuitively knew what was bad for your bodies and naturally steered clear of it and that helped your bodies until it was mature enough to cope better with the toxins. Unfortunately the more civilised we become the more we have lost that natural instinct. I know there are times when I have given Megan a new food to try and she has taken one mouthful and that is it, later sure enough I discover somehow there is a fructose element somewhere to it, How did she know!!

[cdalsass]

Thanks for all the warm hellos!! I do have another sibling, born between my brother & I who more than makes up for our sugar consumption. She has an exceptional sweet tooth. She has 4 children, none with HFI symptoms. My brother who I believe also may have HFI has 3 children, also none with HFI symptoms. My brother was born in 65, quite soon after the disease was discovered, so no Dr would really knew of it at the time. Then when I came along in 76 and started to spit out every baby food containing fruit, my parents already know what they were in for Since it never seemed weird to them, they never looked too deep into it. My father's side of the family has generally a low tolerance for sweets. They are from a small Alpine village in the Northern Italy & they have lived in the same place for several hundred years, so I definitely think that the town is harboring a lot of HFIers. There have been few foods over my life that I have built up a tolerance for. One being pizza/tomatoes, although I still prefer white pizza, it no longer makes me throw up. Mostly I have a totally aversion for anything sweet, even sugar that is safe for people with HFI. Psychologically it makes me so nauseous that I do not enjoy eating it at all. I think the toughest part about having this illness is never eating/having a birthday cake. It makes me so happy that cheese has become more popular on the dessert menu, so I feel slightly less left out. Oh and yes thank you Colormist for your Wikipedia link!!! I was feeling so alone until I found this forum. Great to hear from all of you! Thank you for the warm welcome. Best, Christine