Introduction - new member with HFI

[julienc]

Greetings everyone.

I'm so excited to have stumbled onto this forum. I recently self-diagnosed myself (and my brother) with HFI, and I'm in the process of scheduling a doctor visit to take it a step further and try to get a clinical diagnosis.

I have all the same eating habits as those listed here. Since I was a baby I had a strong aversion to anything sweet and would get very ill (vomiting and nausea) when eating sweet foods. I'm now 30, and I have taught myself to stay away from anything sweet. I don't have a taste for it at all. I never understood why and just told people I had a sugar aversion. The big mystery was always that my brother and I would eat Pixie Stix and Smarties like crazy without problem, and I actually craved them. Because of this people (my parents included) thought we were just being picky eaters.

It is such a relief to see that there are other people out there that experience the same thing and to put a name to it. Fortunately I had my brother to commiserate with while growing up. To my family's knowledge, no one else in our past ever had this condition. My brother now has two children and I have one, and so far none of them are affected.

My greatest concern is reading about the severe liver damage that can result from fructose consumption. Have any of you had your liver tested to see if it's okay? I know I don't consume much of it since I've learned by tasting if it will make me sick, but I am concerned about the smaller amounts that are slipping by.

As mentioned above, I'm pursuing an appointment with a very good GI at our University Hospital. Is this the type of doc I should be meeting with? I guess I need to start somewhere. I went through all my symptoms with general doctors over the years (pediatricians, OB/GYN, etc), and no one was too interested.

I appreciate all your help. I look forward to contributing and learning more from this forum.

[sarahk]

Hi Julie,

I'll send you a longer response later. In the mean time, have you looked at Dr. Tolan's website? He diagnosed me with HFI, and several other people on this site.

www.bu.edu/aldolase/HFI/index.html

[julienc]

Hi Sarah,

Thanks for your response. I have seen Dr. Tolan's site. In fact, the information on that site is what convinced me I have HFI. It definitely appears that he is the leading researcher for this condition.

I'm anxious to learn everything I can.

Are you in the Boston area? Do you mind me asking how he diagnosed you? Was it a DNA test?

ETA: Oops, I just noticed that you're in SF area.

[Tammy]

Hi Julie
Glad you found this site.
We are also on the east coast. We're in PA.
Dr. Tolan will work with your dr in your area. They can send him a blood sample and Dr Tolan will test it. Just have your Dr contact him first and he will tell them what he needs.
I sure hope you can find your answers.
Tammy

[julienc]

Thanks Tammy!

Can you (or anyone else viewing) tell me if there is any reason NOT to pursue a diagnosis? I had a long talk with my brother, and he is concerned about getting a diagnosis since he is in the military - he doesn't want to hurt his medical report. That makes sense, but I'd like to know for me personally.

Obviously as long as we stay away from sugar we're okay, but I'm wondering if insurance companies would see it on my record and get paranoid since it's basically an unknown condition.

Thanks in advance.

[Tammy]

I'm a big supporter of having it dianosed. I can even give you a reason why.
Almost 2 yrs ago my daughter ended up very seriously ill in the hosp. for blood clots. (She was in ICU for 5 weeks on a respirator). During that time, she needed to be fed through a GI tube. The normal "food" they would have usually given contained sugar. They needed to use a different, lot more expensive type. It needed to be pre-approved from the insurance company. If she hadn't already had the DX, the insurance co never would have agreed to pay for the more expensive one (They said it was $1000 a day). But since it was already proven that she couldn't have it, they paid for it without a problem.

We've had other instances where we ran into the same type of thing, but not quite as serious. Some prescription drugs, for example.

Also, if your Doc knows for sure, he will most likely watch your liver. It's the organ that would be affected most.

So because of all of these type of things, I would urge you to get a DX if at all possible. The Dr's would have made Regina a lot worse if we didn't have one.

One note to remember, though. Dr Tolans blood tests only DX about 80% of HFI. His tests didn't show Regina's. We only know for sure because of a liver biopsy. But his blood test is still the best, easiest way to start.

I've never had a reason to wish it wasn't on her record, but I can't speak for the military. Anyone else have any ideas on that?

Tammy

[julienc]

Tammy, thanks for your thoughtful response.

I do plan to pursue a diagnosis - it is important for me even just to validate what I have experienced my whole life.

It is so amazing going through old posts on this board and be able to relate in SO many ways. For example, I always bring little baggies of shreaded wheat when I travel just to be sure there is something available that I can eat. I always blew out the candles on my birthday cake but never ate a piece. I'd eat all the Sweetarts out of my Halloween candy and then gave the rest to my Dad or friends at school. I'd always order pizza without sauce, and even then I'd get in trouble if the dough was too sweet. How many times did I see someone crinkle their face at me and say "That's not sweet." Um, yes it is, trust me, you just don't understand!!

Sorry to ramble. This is just so liberating to find others with my food "issues".

[colormist]

Hi Julie!

Your story sounds like my life. My brother & I both have HFI. I was officially tested for it about a year ago. He has the same adversions, so he obviously has it as well. He hasn't went in to get officially tested (and probably won't until AFTER his duty is over in the national guard). He's pretty excited to torment a doctor with his self-diagnosis though.

Other than tormenting a doctor and getting it down on paper (that's why I wanted it done, so there was a record of it incase anything bad happened) they can't do much else for you. My geneticist (who diagnosed me) actually said I probably knew more about what I could and couldn't do than a dietician ever could.

My geneticist did try to get a blood sample from my mother, though, to see what gene she has that carried over. I think they just want to play. They were really excited when it turned out that I did have HFI. They almost didn't want me to leave (this after a long lecture before I was diagnosed how I probably DIDN'T have HFI, and actually had DFI).

I also went to a University Hospital (Michigan).

Isn't it amazing how you probably never would have figured out what you had if there was no internet? I probably still would be walking around convinced that I was crazy and trying to eat fruit.

[julienc]

Hi Colormist - we do have such similar cases! Was Michigan able to diagnose you, or did your geneticist mail a blood sample to Dr. Tolan?

Isn't it amazing how you probably never would have figured out what you had if there was no internet? I probably still would be walking around convinced that I was crazy and trying to eat fruit.
This is so true!!! How many times have I tried to eat a tart blackberry or raspberry only to regret it about 10 minutes later??? Thank goodness for the internet and Google.

It's funny, about a year ago I googled "hypoglycemia", "sugar allergy", and "sugar intolerance" , but none of these turned up anything that clicked for me. It wasn't until I clued in on the fructose part that I hit jackpot.

[colormist]

Julie,
Michigan sent my blood sample out to Texas (I think). I didn't get the exact location, but it's probably in my paper work. My geneticist wrote this 4-5 page essay on me to send to my doctor and gave me copies. They also did (last second) a blood glucose sample on me, but didn't make me fast. They didn't do it the first time and he knew I wouldn't stop in (for his own personal unnecessary test) a third time.

I did a search on Sugar Intolerance and came across a website that talked about HFI & DFI. I thought I had DFI (as it was more common), but it didn't fit. Later, I went back and studied HFI and decided I had that (even though the site said I probably DIDN'T have it). The site is here: www.foodintol.com/sugar.asp

[Tammy]

Texas? That's interesting. Way back when, they sent Regina's biospy sample to a lab somewhere in Houston.

[julienc]

Just to follow up on the Texas thing... the doctor did say they will send my bloodwork to a lab at Baylor (when they actually do the testing in the fall).