How common is HFI

[kcchater]

How common is HFI?

Is there many people in canada or British Columbia that have HFI?
I live in BC anyone close by me?

[charlie]

Hi Deborah, welcome to the board, your story sounds very like mine, my daughter is now 7 and has had problems for a long time which were dismissed as HFI and then confirmed 2 years later as a definate fructose problem when she went off the graph with the breath test. She has alot of possibly related problems that have been investigated, petit mal epilepsy, lumbar puncture for glucose transporting problems and a 20 hour fast recently to see what the bloods were doing all of which have come back as ok although her blood sugar did go very low.
If your daughter was very reactive you want to try a very low, mininal fructose diet not a low one and beware of hidden surprises. Lots of dietitians and doctors think veg should be ok but it isn't. Megs can't even manage avocado, we risk a bit of potato to vary meals a bit but that is all. If you would like I can send you the British Diet advise which is pretty comprehensive if you send me your email, go on members list and send me a private message with it. The low blood sugar does seem to be a big part of this although many medics say not, what is confusing is why it still happens when you think you have eliminated everything then you think back and find something probably slipped through.
We still have issues like the blood sugar lows, Megs passes out sometimes and still has alot of incontinence and we still don't know why but she is so fed up with hospitals that I am going to try back to really plain food again to see if a pattern is emerging from it.
Good luck with your tests, hope you get on top of it, and don't be afraid to ask.
Charlie

[kcchater]

My son is doing really good I just got back from a check up at children's hopsital in vancouver. My son is gaining weight and growing and they were quite happy.
We have days like if he get sick that i worry and have to make sure he drinks so we don't get dehydrated, but as long as we stick to the diet we are doing okay. We are way better than we were even 6 months ago. It certainly is something you have to be on top of all the time. I'm hoping as he gets older it will get easier.
We are about to celebrate his 2nd birthday on saturday and i made the yogart cake and he loved it. so i'll make it for the weekend for him and we'll have really cake. My daughter who is almost 5 is really good with him and people who watch him.

Deborah bohbot are you waiting for more testing?

[charlie]

Megs has a rash sometimes around her mouth but I always assumed she had a cold coming, her lips would get sore and reddened all around them, will keep an eye and see if ties in with a food reaction, she gets a terrible bottom rash though with food reactions (sorry megs to be so personal about you in public!!!)
I haven't got into the other website much yet, the format is alot harder to read and is a bit mind boggling but the tryptophan info is very interesting I've passed it onto our school nurse to look into.
The fasting test is very hit and miss, by the time Megs went for hers she was on quite a good run too so almost that was a false positive, I'm sure if she had been having a down phase the results may have been different.

[chrisnyc]

the question, how common is HFI is very interesting to me. I personally highly doubt that it is as common as the websites and "research" indicate.
Here's why: if it's one in say 20,000 then that means on a planet with 6 billion there would be 300,000 people with HFI. That means in the US with about 300 million people we'd have 15000 people. with the seriousness and strangeness of the symptoms, even those who have not been diagnosed would find their way to the Internet (or their caretaker). Even accounting for the percentage of people who don't have Internet access etc...I still think we would see WAY more people than we do on these message boards. The sypmtom diagnosis of HFI seems fairly simple. what else appears specifically at weaning with vomiting or worse from anything sweet followed by an extreme aversion to anything sweet (even one sip of soda disgusts) concurrent with an ability to eat fun dip or pixi stix with more or less no problem. there is nothing else that I can see that has this EXACT symptom profile. additionally, my sister and I until we were in out thirties (keep in min I live in NYC and interact with tons of people) had NEVER even heard of a single other person with the same symptom profile. we also had never met another person who had HEARD of someone else with the exact symptom profile and that including the countless doctors we've both been to. if you add up the numbers it just doesn't make sense. my vote is, it's much less common than they think. Fred, you said there are how many people you know of in Canada? how close is that number to how many there would be according to the 1 in 20k number?

[chrisnyc]

ps. to clarify, I am aware that there are some similarities between hfi and fm in terms of diagnosis but most usually it appears that FM develops symptoms more slowly (megs excluded of course) and usually fm people can eat some sugar etc hfi people on the other hand puke from the ingestion of a "normal" dose of sweets right away, from infancy across the board.

[chrisnyc]

Fred,
i've seen research papers that claim as many 1 in 10,000!
That's 600,000 people on earth! let me tell you if there were that many people I really believe we would hear a lot more about it. I totally agree with you that most people just figure that they are freaks because doctors have never heard of it. However, as of about 3 or 4 years ago there became enough stuff on a google search for me to find it and i think others would too. I just think that figuring how serious and weird it is, people must be periodically checking the internet and so a lot more would turn up. Who knows...we live mysterious lives
Well...we never have to wonder if we're special haha

[julienc]

This is interesting discussion. I agree that it seems to be much less common than 1 in 20,000. I, too, have never stumbled on anyone with my food "issues", and I've met a lot of people. No one I know has even heard of someone else having the condition, and that gets to be a big multiplier the older you get. Certainly higher than 20,000, I would think.

I do believe there are a lot of people wandering around out there undiagnosed, hating sweets, and not understanding why. That was me 3 years ago. With the internet, you'd think those people would eventually find this forum...Laura has helped with getting it planted in key locations. It's even linked on Facebook now. Maybe many just don't care?? - they avoid sweets, and move on. My brother comes to mind. I don't think he ever would have bothered with trying to figure out what was "wrong" with him.

[Tammy]

Hey Fred, I keep waiting for you to jump in here. Wasn't there a young kid that was from your town, or someone you worked with or some other "suspicious" kid??? lol ;D

[Tammy]

Thanks Fred. That story always just tickles my fancy. I think of it every time someone asks me if we've ever met anyone who has what Regina has........

[elilly]

Sorry, Graham is still dairy and wheat (gluten) free. On occasion, he does eat some goat cheese but even that is questionable here.