New Member--Intro.

[Yw]

Wow. So glad to find this sight. I've suspected I had HFI for 6 years now and just confirmed 3 weeks ago.

How got dx was as follows: weaned to baby food and according to my mother I was allergic to all baby food and ate only potatoes and peas until age 2. Drank nothing but milk and water as child which remember into my late teens my mother telling people this as if it were an amazing fact. Age 5, within 1 week of starting Kindergarten stopped eating breakfast as bus would have to pull over every morning due to my severe vomiting---I don't recall but suspect my mother was forcing breakfast and giving OJ or maybe oatmeal with lots of sugar or syrup before this and to this day I rarely eat breakfast food---because I don't like a lot of it (I still get a lot of critism for eating things like cheese sandwiches or soup for lunches). I have a vague recollection of my mother not pushing fruit on me because she thought the fiber was causing the trouble in young childhood. When I was about 11-13 or so I realized that if I drank OJ or my brother's Gatorade (which was more common in my house than OJ) I would get horrendously ill for about 2 hours (just long enough to ditch school; no question I was sick enough to stay home: a tactic which I used sporadically in order to watch major soap opera events in the days before DVRs or to buy time to write a paper). By age 17 I was going to join the Marines but was under weight on ship out to boot came time...so they suggested I eat lots of bananas prior to weigh-in...I probably ate like 8-10 bananas in a few hours time became very ill setting off course of events including not being accepted to Marines (what was I thinking anyway) to having many many tests done for unexplained illness. Final analysis was anemia & poor diet (my family was pretty poor so that was underlying assumed cause). MD recommended just as I went off to college 2 glasses of juice and a Vitamen C supplement every morning; my first year of course was a nightmare with many trips to the school infirmary and many looks implying I was faking an illness for attention or suffering too much stress. I still did not even realize that there was any connection between fruit (fructose) and my problems. I was convinced I was allergic to Vitamen C but the school nurses laughed pretty much in my face and dismissed it; although I absolutely was certan this was the reason...from age 19-30 but too embarrassed to tell anyone because I couldn't find anything on web to support Vitamen C food allergy. I had random serious reactions to sweet stuff (fruit usually) ---I usually avoided it but at least once a year or so I'd feel bad about it and unhealthy and try to eat more. Finally at age 28, I'm working in a research facility where they test drugs on patients with a large nursing staff (and plenty of left over milk and OJ cartons for staff to take home) and one of nurses realizes that I always choose milk vs juice and she choices juice vs milk (because she is lactose intolerate)...she suggests I have fructose intolerance. I google it and HFI is exactly what I have. MD dismisses HFI because if I had that then "you would have died by now, particularly in early childhood" (it still never occurred to me that baby food allergy was related to this). He notes I have fructose malasorption and am allergic to OJ---saying I should eat small fruits like grapes and blueberries but not juice or canned fruits or other fruits. I believed this as the info on HFI does seem to suggest I would have serious liver problems...what happens to fructose-1-phosphate ?...everything makes it sound like it is there forever in liver and just gets added to every time you eat more fructose?...few months ago I get new medical insurance, new MD, and at physical she suggests the HFI infusion test leading to dx.

So: my big problems are...
#1. diet...I just ate anything and assumed I had some kind of Vitamen C tolerance problem or something and that if I did get sick it was nothing to worry about. Also, how much is less than 40 mg per Kg of body weight (I weigh 165---overweight)?

One thing that is totally weird I drank a 12 oz. can of soda every day for lunch since college due to craving it but Mt.Dew and super sweet ones (rootbeer and Dr. Pepper) turn me off because so sweet tasting. And I didn't get the horrible lightedness, weakness, shakes, or vomiting that came with any fruits. Also I ate a cup of blueberries or a banana weekly--I felt good about this as I thought at least I was getting some fruit.

#2. Fear. I am terrified about liver damage given all the soda I drank and random one time accidental 'overdosing' of fructose. I just pulled out a pack of crackers that I have never had a problem with (Lance cream cheese and chives) saw the 20th ingrediate is HFCS and am terrified to eat it. Needless to say also since dx I have had nothing to drink but water, black coffee, and milk (FYI: and I'll repost more under topic but I did have "Calcium overload" once in college so maybe is related in part?--love dairy products).


This dx is a comfort in a way as confirmation of supsected. It explains all the weird things I did to avoid 'vitamen C' and definately clarifies how sick I got from trying to be 'healthy' by eating food I thought had no vitamen C in: wheat bread.

Hah:may also explains why women who wear fruity smelling perfumes/deoderants or why fruit-smelling air fresheners turn my stomach.

Yetta

[julienc]

Yetta,

So glad you found this site.

Wow, what a story. I can definitely relate to the guilty feelings of thinking you should eat fruit, trying to eat fruit, and then getting sick.

What is the HFI infusion test? Many here (including myself) were diagnosed via DNA testing. I'm curious about other methods of diagnosis.

I'm really surprised your doc didn't check your liver as part of your diagnosis. You should certainly demand that they run some blood work. Did your doc examine your liver (by prodding it) to see if it was enlarged at all? They twisted me every which way to get a feel on it and see if it felt enlarged, and then they ran several blood tests to check my liver function. I'm not sure of the names of any of them, but the doc said they came out "normal".

The soda thing is strange. Did you possibly drink diet soda that was sweetened with aspartame? That would have been safe. Otherwise, I would suspect that you would have some sort of reaction to consuming all that sugar. However, I have noticed that now that I have eliminated fructose completely from my diet, my reaction is much stronger when something does slip by. Maybe your body found an odd way to somehow cope with it, or perhaps you just became accustomed to the sick/queasy feeling and ignored it. I had an upset stomach for most of my life, and I think I just tuned it out as being "normal".

I can't even imagine eating 8 bananas all at once!

What happened when you had a calcium overload? I also eat TONS of dairy, and I drink a ton of milk. My beverage consumption is very similar - I only drink milk, water, and tea. For some reason I never had a taste for coffee.

I can also relate to the diagnosis being a comfort - I was often labeled as "weird" or as a "picky-eater" throughout my life. Now I can finally tell people WHY.

[yw]

Everything was normal for blood liver tests and stomach exam from physical but urine were not normal but not really bad either. I think despite everything this MD was still skeptical it could be HFI since I told her I could drink soda---very odd about soda---mainly Pepsi, the diet soda tastes way to sweet. I don't know...if only 1 can I was OK: Mt.Dew was same result as fruit though. I can say that now that I went looking for HFCS and other banned sources that there is practically none in anything I eat (everything is like the 10th or more ingrediate). Except the berries and the bananas. Potatoes and meats and pasta with cheese sauces is pretty much it...some veggies...peas. Cheese and pasta and potatoes I have at least every day. Sometimes I eat potatoes at every meal ---baked potato with butter is one of my staple breakfasts.

The infusion is an IV test where they inject fructose solution and measure increases in sugar levels; you stay in office whole time. It is like knowing you are going to eat fruit (aka, when force self but know it is going to be bad) but it never gets that bad because they stopped before horrendously ill.

Calcium overload: nothing too serious but kind of embarrassing: acid taste to stomach--burning belches, white hard stool (this is what freaked me out), kidney stones possible...this was in the year of the prescribed fruit juice at college. On top of my usually large amounts of dietary calcium, which was even more than usual due to unlimited cheese in salad bar, I was taking tums and kapeptic several times a day to try to steady stomach. It's hard to overload through diet and it is the tums and kapeptic that was doing it (at least that's what they said at the time). And I've never had a problem since---even if I do use tums occassionally.

[millan]

Welcome to the board!

You sure have had a long and difficult road before your diagnose!

As you will gather from this place, everyone has slightly different thresholds as to how much fructose they can eat before getting sick, and we also have different reactions to different foods.

I must admit that I sometimes eat a little bit of blue-berries or raspberries without getting sick (love them and don't get a reaction on just a handful), but I detest the taste of some vegetables that others do fine on.

I've been thinking that in part it could have something to do with the fact that different fruit/vegetables/berries may have slightly different amounts of fructose, depending on where they are grown.

As for milk, several people here has mentioned that when eating something with fructose, they don't get as sick if they eat something with glucose afterwards.
Me, I use milk for the same purpose. Don't know if it really helps but I really crave the taste of milk when I feel sick to my stomach.

The infusion sounds what they did to me over 35 years ago when I was diagnosed as a young child. I don't remember but my mom tells how they injected fructose and monitored my vitals as I got really sick. I think it's a horrible thing to do to anyone, especially nowadays when you can get diagnosed with DNA testing.
Your liver should really be enlarged, but if it's not, than I can only say congratulations! Even if the liver is damaged, it's not irreversible if you keep a careful diet.

Now at least you know what's wrong!

[colormist]

OMG, Yetta. That's just about the scariest HFI story I've heard in a long while.

And, seriously, I'm glad you know what you have, you have a dx, and that you're aware of the dreaded ingredients list. If readily available in your area, I recommend shredded wheat for breakfast. It's my favorite and I go through two boxes a week. Cream of wheat, grits, plain oatmeal, and puffed wheat/rice are also popular favorites around here.

As far as fruit, I love unripe apples, unripe grapes, and unripe black raspberries. Not that they're good for you, but I think they're yummy and they're super-tart. A lot of us crave bananas, but we can't have them, so we eat banana runts. (sugar-free candy)

Millan, I usually go for potatoes or milk when I have hypoglycemia. I've just recently started using pixie stix because they have less fat and work faster.

[Hilda]

Hi everyone, my name is Hilda and i´m 31 years old, I also have HFI since I was born, it was detected at birth by the Childrens hospital in Boston. I can say that thanks to them i´m alive, but i also know that it took about 3 months to discover this food intolerance.. I have been living in Portugal most my life and had no idea that we could use subtitutes of sugar.. I have always avoided all food and drinks that are sweet.. In Portugal not many people know about HFI, not even doctors that i have consulted ever knew anyone with this disorder.. yep, that´s Portugal for you! Anyway i´m glad to have found this site and now after 31 years i might start introducing other types of food in my diet.. Thanks!
Can anyone let me know what are the exact names of the susbtitutes of sugar that we can use to make deserts?

Kind Regards, Hilda

[colormist]

Dextrose/Glucose are the main ones. Some people use Aspertame or Stevia--but these tend to be too sweet for some HFIers.

You can get Dextrose on Amazon.com (if you don't mind paying for the shipping). This was the only place I was able to find it. It's not readily available in stores in the States.

EDIT: Gah! I completely forgot to welcome you! Welcome to the group, and do either of you mind me asking how you found us? We're trying to find more ways to get our name out there.

[julienc]

Hi Hilda,

Welcome to the board!

Ditto what Colormist said. I haven't actually added dextrose or aspartame to anything I've cooked, mainly because I don't like sweet things at all. So I can't comment on actually cooking methods and techniques. The aspartame should be pretty easy to find. Here in the US it is packaged under the names Equal and NutraSweet.

I'm impressed you were diagnosed so early! Those people in Boston must have their wits about them - and 31 years ago, too.

[Tammy]

Hi Hilda.
I use dextrose to bake for my daughter. She was also DX at a young age. She was 2 1/2. (She's now 26) She was DX at our local hospital, but from a young Dr who moved to our area from Boston. He had heard/seen HFI while in Boston. Who knows? I always say, it could have been Fred. Now it could have been you, also.

When I use Dextrose, I use it the same as the recipe calls for sugar. It's not as sweet, but she usually likes it that way. I think if you want it taste the same, you should use about 1 1/2 of dextrose to 1 of sugar. Since dextrose is a powder type, you then need to add a little more liquid (usually milk, or water) if you use the extra dextrose.

Hope this gives you a place to start, and glad you found us.
Tammy

[Hilda]

Hi again,
Thanks for getting back to me.. I will try dextrose to see if i´m able to tolorate it, hopefully it exists here in Portugal.. hehehehe

Tammy, who knows maybe your daughters doctor could have been mine, did he work at the childrens hospital in 1976? that would be nice to know..

Fortunately, I was lucky because babeis that were born before me didn´t make it.. I was also submited to months of tests that left scars, i have cuts on my arms and legs and stomach ( from a biopsy to the liver) my mom says that when i was a baby i suffered alot.. luckly i don´t remember.. all i know is that everytime i saw anyone dressed in white i would cry and beg my parents not to let them take me.. I was very scared of doctors until i was abot 12 years old.

I´m also curiose about alcoholic drinks, I thought we couldn´t drink wine because it´s made of grapes and how about beer? hmm if you know of any brands let me know..

Thank you!
like we say in portuguese: Obrigada!

[colormist]

As far as wine, you can have it in moderation if it's VERY DRY white or red wine. I've tried very dry white wine--not a fan. I've yet to try very dry red wine.

On the alcohol front, I do believe Amstel Light is fine. I also think we decided that Sam Adams Light is okay. I know there's a whole list somewhere in the adult thread. If you search for 'beer' it should pop up.

[Tammy]

Hi Hilda,
Our Doctor came to our area in 1984. He was very young, but it's still very possible that he was there for you. His name was Martin Maksimak. He's still in our area, but we don't see him as he is still a peds Dr and we have out grown him. Very interesting. Like they say, small world, and even smaller with the internet.

[julienc]

I'm also not a fan of white wine, but I have had some dry reds (merlots, cabarnets) that are quite tasty. I usually limit myself to one glass, if any. Supposedly most all of the sugars are fermented into alcohol in the drier wines.

I do like beer. Corona is quite good. I'm sure over there you'd have oodles of good German beer to try. I'm going to butcher the spelling, but I have done fine with Heinichan.

We did do a beer thread once that talked about the types of beers to look for. I don't remember the specifics, but it had to do with the type of hops, I think. And steer clear of the "honey" wheat beers.

[ywilbur]

It's been a long time since I posted. Over a year but I've lurked as a guest many times. I usually read through the site at least once a week but usually at work so no time to post. For me the best think about finding this site is that it has really expanded my diet! Especially breakfast which I usually skipped but would occassionally eat baked potato. It was probably the OJ or sugary bacon/cereals that turned me off all breakfast food as a child but now I've got a ton more options---cream of wheat being my new favorite. My biggest concerns now are getting enough vitamen C (I'm always coming up anemic at MD and he keeps saying it's because need more vit C). I also seem to have a really hard time eating healthy, low fat meals (I blame it way way to much cheese and milk: it's 2% milk but some days I drink a 1/2 gallon per day---plus I don't exercise outside of general housekeeping etc...). Just wanted to let everyone know how much I appreciate everything learning on group.