New here,... an introduction

[flanagan]

Hello All,
Just got the results for the genetic test back this week, confirmed for HFI. New to these boards and I wanted to introduce myself. I made it to 33 years old and my brother to 40 without ever being aware of this condition. Just hated anything remotely sweet with a passion since infancy; thought I had too many sweet taste receptors in my mouth or something similar. I've started having some health problems, and stumbled onto HFI while researching. I'm sure my doctor thought I was crazy when I brought this up, but reading forums like this,... it's like discovering a family member you never knew about. I mean, where else can you find people who are so excited to talk about pixie stix! So, as I said, I lead a naturally low fructose diet, but now I'm going to have to work and sacrifice a bit to get down to near zero. I look forward to talking with all of you in the future and hope I can contribute to the online community here.

[charlie]

Hi,

welcome on board, great to have another diagnosed who knew by instinct what to be careful about, just goes to show how important it is.

Feel free to add your experiences and ask any questions you want, we rarely bite!!!!

[colormist]

thought I had too many sweet taste receptors in my mouth or something similar

A decade or so ago (when I was a teenager) I recall watching a TV special about "super tasters" and how a lot of models were "super tasters". They had twice as many taste buds in their mouths and that's why they were so skinny. They didn't like the taste of most foods.

I became convinced that I was a super taster. I examined my tongue thoroughly and announced to my mom that my brother and I were "super tasters" and that was why we didn't like most food.

I was quite certain of my new-found diagnosis.

It's funny you mention having too many sweet taste receptors in your mouth, because I was certain that was my problem as well. Perhaps we watched the same TV special?

Welcome to our pixy stix addict anonymous support group.

[Mimi]

Welcome, Flanagan. I used to think I was the only person on earth who hated sweets. I was well into adulthood before I heard of HFI. Yes, this is like meeting a family I never knew.

[flanagan]

Thanks for the warm welcome!

Colormist - Its possible we saw something similiar. I recall something about people having a "sweet tooth" because they had a shortage or sweet taste buds. In short, they needed sweeter things to get the same taste sensation that other people would have. I just figured that the opposite was true for me and my brother,... too many sweet taste buds.

[charlie]

LOL colormist, I like that story, lucky they didn't have you committed......

[ukbill]

Welcome to the site Flanagan I hope you find your health problems now clear up and you have a happier and healthier life from now on

[flanagan]

Thanks much Bill. I hope so too. The last couple years I've been sliding into a general state of low energy, low concentration, and extreme fatigue. Performing at 50% or less on a daily basis. Someone on here was talking about a "brain fog", and I can certainly relate to that. It was getting bad enough that I started wondering if I would be able to keep my job, friends, etc. I cut out those damn powdered non-dairy creamers and have bounced back some but not all. l'm going to try to get a couple of weeks in here of extremely low fructose and hope I get some positive improvement.

[ukbill]

I am not sure how many of the back posts you have read but watch out for Glucose and similar sweeteners also Sorbitol which is also very bad for us with HFI.

The problem with Glucose is its made from whole maize which has a 4% sugar content before the process is started to convert it into Glucose or HFCS, and no attempt is made to remove this!

Also its made in the same tanks as HFCS and runs through the same pipes, storage and filling out equipment.

So there is a high likelihood of contamination.

However you will not notice the effect of low level contamination because any Hypoglycaemic effects of the Fructose contamination will be swamped by the effect of the Glucose.

The same goes for eating "tolerated" foods if you eat too many of them then damage will be being done "behind the scenes" which while it might not be cause liver damage will be bringing down your general level of health and feeling of well being.

I am glad you have identified fake milk as a cause I am sure you will soon find a lot more of them

Good news is you are possibly going to soon feel better than you have EVER felt before in your life!!

How good is that?



Keep smiling

[flanagan]

Bill

I have been working my way through some back posts for the last week but still have quite a bit to go. I'm familiar with staying away from fructose, sucrose, sorbitol, and the other less common sugar/additives.

I am curious about the glucose/dextrose thing. If I understand correctly, there is a spirited debate on this and I just want to make sure I understand it.

When you say "Glucose" you are referring to just the manufactured variant correct? Such as dextrose and it's cousins. You are not referring to the glucose the body would derive from carbs like white rice? Am I correct in that?

With Dextrose, you believe that there exists a significant possibility of poor manufacturing process (cross contamination, HFCS, etc.).

Do you have any other issues with dextrose/glucose? For instance, if there did hypothetically exist a safe source of pure dextrose, would you avoid it for any other reasons?

I know the great feeling you are talking about. I had it for one day last December so I know it's attainable. I can't wait to feel that way again. The way I use to when I was younger.

[Chris]

Hi flanagan,

I'm new to the forum too. I've done a bit of biochemistry at University. I think there's a lot about metabolic pathways that we don't know and so nothing is "written in stone".

However as I understand it the problem with HFI is that fructose that's eaten is dangerous as it cannot be metabolised properly so it forms toxic metabolites.

Sucrose contains fructose. Sorbitol is converted to fructose by an enzyme which isn't defective in people with HFI.

Sucrose is a disaccharide (2 sugars joined together) - the monosaccharides Fructose and Glucose.

Glucose has 2 forms called isomers. These are D-Glucose (Dextrose) & L-Glucose according to which direction they rotate polarised light when shone through it (L-levo (left) : D-Dextro (right)).

The only naturally occuring form of glucose is D-Glucose (dextrose). L-Glucose is manufactured - as far as I'm aware its not routinely in food. Neither is dangerous for people with HFI.

I've tasted pure glucose in a chemistry lesson and oddly it doesn't taste very sweet. Pure glucose is safe for people with HFI.

Lactose is the disaccharide which is abundent in milk (made up of the monosaccharides of galactose and glucose). Hence its safe for people with HFI. There is a lot more lactose in human breast milk than cow's milk. High concentrations of lactose (human breast milk tastes a bit sweet) hence in the 70s they sweetened formula with sucrose to make it taste like breast milk - which is where I ran into trouble (near death). Formula is no longer sweetened with sucrose so it no longer damages undiagnosed HFI babies.

I understand it varies how sensitive different people with HFI's aversion to sweet taste is. If the aversion is very strong even tiny amounts of fructose aren't tolerated and spat back out. I guess if someone has HFI and a relatively mild aversion to sweet taste then they could run into trouble. Fortunately for HFI suffers Fructose is intensely sweet and we can screen most of it out through our taste buds otherwise more of us would die early.

I agree with Bill's point that foods containing dextrose may contain fructose or sucrose.

I guess on a molecular level all our food is likely to be contaminated with small amounts of fructose and sucrose. I guess the issue is how much? I'm not sure anyone will be able to answer it and we have to do our best guess and rely on our taste buds. If the ingredient is "sugar" assume its sucrose and don't go near it.

[charlie]

Hi Chris,

thanks for clarifying all that, sounds like your knowledge will be a very useful addition to the board.

[flanagan]

Chris,
Welcome to these boards; I'm a relatively new addition to them as well. Thanks for the quick summation, especially on the chirality of glucose. The question I had posed to Bill was less about bio-chemistry and more about lifestyle.

I think, now that I've read almost all the back posts in several sections of the board, that I have a better understanding of what Bill's position is regarding dextrose as an additive in foods. Issues include: cross-contamination with fructose/sucrose, lessening of ability to discern sweet tastes, and addictive like behavior developing from the sugar rush of dextrose based candies like pixy stix. I should add that because Bill has been the most vocal in presenting these opinions in other threads, I veiw him as a sort of adhoc spokesperson for the above.

Now I don't really think I have an opinion on the above debate as of yet, but I wanted to clarify in my mind the core concepts so that I could have an informed opinion at some point.

Again welcome, and I am looking forward to seeing more posts from you.

[Chris]

I see what you mean. If someone with HFI gets used to the sweetish taste of glucose they could start getting used to increasing amounts of very sweet fructose.

[flanagan]

Chris,

Correct, that is one side of the discussion. In the case of diagnosis in childhood, some parents create foods for their child that mimic normal sweet treats and desserts, i.e. an ice cream using a safe/tolerated sweetener instead of sugar. Since I developed a natural aversion to sweets (as they say) through my life, I doubt I would enjoy them and have zero interest in trying them.

Yikes, before we stray into dangerous ground accidentally.

This issue has brought about some very HEATED debate by some members, so I am not looking to start the conversation over again in this theard. I just wanted to clarify a few points for my own sake. You can view the "Social Issues" thread for an insight as to how some members feel about the peer pressure of food and food related events. You might have something to add to that thread too, I think you talked about food pressure in your introduction post.

Keep posting

[Chris]

Thanks for the heads up and thanks for the warm welcome. Its great to socialise (albeit in cyberspace) with people that face similar problems to me.
We may all have the same useless aldolase b enzyme but we won't all have the same opinions and personalities.
I can appreciate both sides of the "to dextrose or not to dextrose" argument and I can confidently and unequivocally state that I'll be sitting on the fence on this one!

[ukbill]

#Welcome to the forum Chris.

For clarity I have only researched the production of Glucose and found it not to be HFI safe.

According to the patents all Glucose manufactured from Maize (all of it in the USA) will be contaminated with between 4% and 40% sucrose or "other sugars".

Even at 40% "other sugars" it can still legally be sold as "100 pure Glucose"

By the research I have done none will be below 4%

I have frequently explained the difficulty of isolating one carbohydrate from another and believe that instrumental tolerances might mean that up to 10% might go unidentified or undetected in an analysis.

I have not looked into Dextrose yet!

SO I have no opinion on the dangers of Dextrose except that it would be sensible not to use it until someone (myself if I can find the time) has investigated the manufacture and processes it go's through.

The manufactures will not see any problem with purity..

They work on the basis that it is pure so long as contaminants cannot be detected.. or fall within the legally allowable in order to call a product "pure".

I checked at my dentist where they have medical grade Dextrose in case a patent who is diabetic has a Hypo attack.

It stated it was 90% Dextrose.

It did not list any other ingredient.. therefore we have to ask what is the other 10%??

So use it at your own peril.

[flanagan]

Hey Bill,

I looked into the dextrose standards for food in the U.S. and they look pretty decent. 99% or above when reduced. Dextrose in it's base crystal form contains quite a bit of moisture 7% to 9% and that may account for the medical grade you saw as being listed at 90%. All of the manufacturers I saw selling it for production (mostly mainland China) listed over 99% purity, probably to comply with US FDA standards.

Now that being said,... I think there can still be a question regarding how pure a product is after it is "used" in production. Pure dextrose may be shipped into a US candy factory, but cross contamination on the processing lines may result in a lower purity end product. I don't have any info to support that,... but as you say,... buyer beware.

Here are two links that I found helpful.

ajph.aphapublications.org/doi/pdf/10.2105/AJPH.29.2.135

law.justia.com/cfr/title21/21-2.0.1.1.38.2.html