Referred by Tammy

[colormist]

I'm about 27 years into my fructose problem but only a few weeks into my HFI self-diagnosis. People were beginning to say my problem was psychological and I was beginning to believe them.

I just recently had to go through my cupboards and throw out that which was a major no-no. I am literally AMAZED at half of the stuff I was eating that I always showed disfavor(?) for.

I've had apprehension towards eating bread, hotdogs, mayo, salad dressing, lunch meats, alcohol... Some things I could identify right off as being bad, but others (like the above) hide their sugars more efficiently. I started avoiding coffee creamer after I noticed it had corn syrup solids in it, today I gave in and added some creamer to my coffee. When you're perpetually nauseated, you don't really notice the bad foods as easily.

People try to take me out to eat and would ask my opinion on various restaurants. I would merely reply that I don't really LIKE food. Now I know why I don't really like it.

I had an appointment on Monday to talk to my Primary Care Physician about HFI. She believed me (which totally threw me for a loop) and referred me to the University of Michigan's Genetics Department. It was no surprise to me that she, nor the pediatrician had heard of HFI before.

Both my brother (Wes) and I have the similar diet and similar reactions. I believe my miscarried brother (Zack, died at birth) may have also had HFI, as he had liver problems. My mom took the HFI self-diagnosis rather poorly. I think she may feel a bit guilty for trying to sneak us sugar as a child. So I'm not inclinded to point out that HFI might have been a factor in Zack's miscarriage.

This may sound a bit silly, but I'm seriously happy to see other people in the world like my brother & myself. And, it helps to know that I'm not crazy.

[Tammy]

Welcome to this board. Glad to be of moral support.

I don't really think that your mothers mis-carrage was a by-product of HFI. I was told that during pregnancy that the mother's liver will take care of the fructose issues. My daughter had severe cirrohsis of liver, but not until about 7 mos of age. After she started eating fruit. It was fine when she was born. So that tends to let me believe that my liver did, in fact, do the work.

So I wouldn't burden your mother with thinking it was the HFI. In fact, if the subject comes up, I'd tell it had nothing to do with it.

And speaking from a mothers point of view, you do feel guilty about some things, (just ask Kristen. lol) But you just go on and make the best of things from this point forward.

Just being curious, what kind of reactions do you and your brother have? We have different people here with different reactions.

I hope you find some useful things on this site. And I hope they work for you.

Tammy

[colormist]

tammy said:

Just being curious, what kind of reactions do you and your brother have? We have different people here with different reactions.

Normally it's just mild nausea from very small doses of sugar. The worst reaction to my recollection was when I was 8-9. My friend's mom gave her a candy bar and she decided to share it with everyone in the vehicle (a very generous offer for a 9-year old). I ended up with a fourth of a Clark bar in my hand and no refusal on my part would allow me to pawn it off on someone else.

Feeling guilty for not appreciating the gift, I started trying to eat it--slowly. I think I might have consumed about a fourth of the fourth (1/16 of a candy bar) before I became too nauseated to continue. The rest of it melted in my hand and I tried to act like nothing was wrong.

I've never really noticed anything beyond debilitating nausea. I've been wondering what the side effects are and what I may have been experiencing that is actually abnormal.

From the reaction of my doctor, apparently hypoglycemia isn't normal? It's common in my family, so I figured it was an everyday thing.

Hopefully I'll notice some difference by going fructose free.

[colormist]

Just a personal update, to keep a journal. I'm getting a little anxious about my upcoming genetic appointment and trying to keep a loose record. Apparently the genetics department doesn't know anything about HFI and will be doing research before our appointment to learn more.

Also realized that my horrid reaction to the soy coffee that I attempted to drink for two days (a few months ago) was actually because of my Fructose Intolerance. Had to ask my boss if I could go home early because I thought I was going to puke. Thankfully, I quickly realized that I couldn't eat soy. I didn't realize the connection then to HFI until I read something about soy here.

I went on a strict HFI diet after I joined this forum and started drinking green tea daily. I feel better, emotionally & physically. But, again, to test my reaction (as I believe I had built up somewhat of a tolerance to the nausea--I was still experiencing it, but had learned to ignore it) I had 2 beef kielbasa and became pretty sick that evening. I was miserable, but I was happy because I knew the source of my misery. lol

Steering clear of hotdogs and kielbasa henceforth.

Also, I don't think I mentioned this before. I had been experiencing hypoglycemia near-daily for the longest time. When I talked to my doctor, she asked if I was hypoglycemic. Of course, this confused me horribly. I thought this was a common occurance. I don't think I've told anyone before that I was hypoglycemic. I had heard my mother talk about being hypoglycemic and she brushed it off like it was no big deal. After reading a few articles online, I've learned that it is definitely not something to be taken lightly.

And a last note, Pixie sticks, when eaten after foods containing a form of bad-sugars, definitely help (near instantaneously) to stop my body's reaction to sugar. I need to get an 'In-case of emergency' pixie stick case.

That's SAM's Club monster box of pixie sticks looks better & better everytime I walk by.

[Tammy]

I'm guessing that there was sugar and/or corn syrup in the kielbasa and hot dogs? Hot dogs you can find that are safe. Kielbasa may be a lot harder to find. I usually just use fresh sausage and make it the same way.

[colormist]

kristen said:

Kielbasa should be easy too...well providing you aren't partial to the fake stuff.

You should be able to find a deli that has fresh & smoked kielbasa that is safe. Proper Kielbasa does NOT call for sugar. Although, some varieties may have small amounts of spices, etc that may bother some. Just ask the clerk for the ingredients.

I checked all the kielbasa and hotdogs at the grocery and all had sugar as an ingredient. I'll have to keep looking. I remember being very partial to Morning Star Farms hot dogs (usually things I found myself gravitating towards were actually products without sugar), but I can't seem to find them in the vegetarian freezer section any more.

I'll have to check the deli store next time I'm in town. I'm really craving some hotdogs with 'kraut & mustard.

I'm also a little concerned with Soy. I've had meatless products before (i.e. Morning Star Farms & Boca) and didn't notice any horrible reaction to soy until I tried the soy milk & soy coffee. Has anyone else noticed any mixed reactions to soy?

[kristen]

Soy was actually one of the first items we noticed Coley having a reaction to.

But it's a common item for kids so we just stayed away from it. But get this...he'd eat infant biscuits that contained soy for a snack. Later (like hours later) have something that was presumably safe, then barf a little while later. What he barfed was the infant buscuits without a speck of the 2nd meal. Can't even imagine how that's possible...but apparently his stomach was able to seperate stuff out.

It was the same way with his formula. The one that was made with corn syrup solids. He'd barf that sometime after drinking it, and it didn't look like milk anymore...it looked like syrup. Without getting too cross..since he was vomiting with such force it was tough to get it all cleaned up. As hard as we tried, we would eventually find a shalack (sp) type substance sprayed across our walls.

Anyway...I would try staying away from soy for a bit to see if you don't notice a difference.

We've been able to find 2 types of hot dogs that do not contain sugar: Dietz & Watson and Hebrew National. Not all the varieties are safe, but a few are. We've also been able to find chicken & turkey sausages too...some contain other no-no's like onion, but Whole Foods carries a pretty big variety so there are some like Spinach/Feta Chicken, or Green Onion Chicken that are fine.

As far as the Kielbasa goes, open the phone directory and find a Polish or European Deli...you should have no problem finding some safe stuff. And you'll never want that stuff from the grocery store again! There is just no substitute for real polish sausage!

Good luck!
KJ

[colormist]

I'll have to pick up Hebrew National. I've seen that in one of my local groceries recently.

I have a Whole Foods near my work. I guess I'm just going to have to risk that horrid parking lot and stock up on some food. There's also a Trader Joe's nearby that I'll have to devote my attention to.

As for Corn Syrup Solids, I tried non-dairy creamer again (the dehydrated variety) and it definitely isn't agreeing with me. I don't puke anymore, but I do end up feeling miserable all day. I was really hoping non-dairy creamer would have the okay corn syrup solids in it.

[colormist]

Just got my test results back from the genetics clinic. During our first meeting, he insisted that it was highly unlikely that I had HFI and said it's probably the more-common DFI. I continued talking like I had HFI and discussed pregnancy, diet, etc.

Today, he walks in and said I just reaffirmed an important lesson he learned in his first year of med-school. "Listen to your patient and they will tell you what's wrong with them. My professor meant the symptoms will tell you, but in your case, you gave me the diagnosis."

I guess that was his way of apologizing. I think he learned a LOT from meeting me. I was his first-ever case of HFI and even the head of the Genetics Clinic had only met one case in his life.

Now they want to do genetics testing on my mom to make sure which kind of chromosonal mutation I have. Hopefully my mom is okay with it.

He also said that he would show me to a dietician, but that I actually know more about my diet than any dietician would know.

This I thought was interesting, he said I shouldn't get a medical alert bracelet because it would cause more harm than good. That if someone saw the bracelet they wouldn't know what it was or how to handle me so they wouldn't do anything-at all. He also did some research into fructose-based IVs or medications and reassured me that all the IVs in the facility were either lactose, glucose, or saline based. Nobody he talked to even knew of an IV that would have fructose.

The only thing you'd have to watch for would be medications, but if they're IV based, again, they're going to be glucose/saline based.

So, I guess, good news in the long run.

[colormist]

The doctor said it was around a 1% chance that the baby would end up with HFI and that there's a larger chance that they'd be hypoglycemic. He said to just let the doctor know that I had HFI and hypoglycemia so they could keep an eye out for any potential problems. He did recommend taking a straight folic acid pill a while before I started trying to have a kid for neurological reasons. I told him that the regular pills made me sick and he thought just a straight folic acid pill wouldn't have any sugars in it.

Mostly he was sad to see me go. I could tell he wanted to learn more about me.

What was funny was when he was talking about me being his first case he had met and the head of the hospital only meeting one case in his life, then he added, "And you! You know TWO people!! Yourself AND your brother!" Meanwhile, I'm thinking, well, I actually know a LOT more than two people. There are these folks online...

It was nice overall. They weren't pushy and not too disbelieving. Though I did feel a tad bit like a labrat there for the first meeting, the second was much more friendly. They actually believed that I knew more about the mutation than they could ever teach me. I was a bit worried about running into similar situations with horrid dieticians and doctors telling me to eat things that I couldn't technically eat or being force fed a sugar substance just to gage my reaction.

I dunno. If anyone is in the SE Michigan area, I'd recommend going to UM Hospitals Genetic Clinic. They seem very understanding and helpful.

[ukbill]

OK a bit of family history might help here.

When pregnant with me my mother suddenly went off anything sweet the very smell of an ice cream or fruit made her sick.

For that I am very grateful!

Because then she put 2 + 2 together quickly when presented with for my aversion to sugar and sweet things, so I was not Forced too much to try to eat the nasty stuff!

However to this day she blames herself for my HFI!

Yes you might have problems with your children but not bad if you take care!

First a question? do you have problems when you get hungry?

Do you feel ill, tired and if excessing when hungry even physically sick?

I do.

I lost my second child to Cot death syndrome and I suspect he had something not diagnosed as he was a VERY quiet child and although a big bouncing baby he could only every cry very very quietly so quietly you had to be by the cot to hear.

He could laugh and giggle as loud as any child however!

Anyway the next child (4 years later) was a girl and as luck would have it we had an Apponea monitor!

Jennifer was born with what I came to describe (until recently) as an immature liver. She could not convert body fat back into blood sugar until she was 12 months old.

The indicator was that she would not wake up ever! For food if just fed than she would wake up if she needed her nappy changing but never at night she would have slept straight through (except she would not have ever woken up)
In the early days my wife would get her up to feed her (she was breastfeeding) because she was over full of milk and could not wait any longer.

Anyway to cut a long story short I eventually decided to wake Jennifer up at midnight (we never go alarms much before then) and give her a bottle of formula milk she then slept through to 6am with out a single alarm unlike the 6 alarms I had had the previous night!

After that until she was 12 months old it was the routine every night then one night as I was on my way to feed her she was awake and shouting for her milk!

Her breathing changed also at the around the same time and she has not stopped eating since! ;-) So within 2 weeks we sent the Apponeia monitor back.

I must send the charity that provided the monitor a donation again.

Anyway this is not to frighten you but to give a little advance knowledge.

I would find a monitor and use it! But maybe you need to get pregnant first?

My other 2 boys are fit and fine and show no signs of any "strangeness" of this sort anyway.

OH yes I know all about the physiological side of it!

I am sure the Doctor I have now still thinks it's all in my mind even though we have the diagnosis!

By the way yes the pressure from Doctors, mother in laws and the like to feed sweet things is very high and totally stupid!

Until only a few years ago refined sugar did not exist! Human beings only source of refined sugar was Honey and that was only in limited amounts due to its cost.

So for anyone to say that sugar in our diets is essential is really very wrong headed!

There are several of us on this site who can prove that wrong for a start! ;-)

In conclusion I offer you my very best wishes and congratulations for finally being diagnosed correctly!

If I can be any help with the diet then please let me know. However some of the foods you mention are foreign to me living in the UK I have done Europe but not the USA yet it is something I am looking forward to in the future!

Best regards

Bill A.