atypical HFI?

[urmensch]

Hello, I have never posted here before.

I have some kind of hereditary fructose intolerance, but the
symptoms are somewhat different from what most of you have.
I never had stomach upsets, although I did have incredible
amounts of gas. My main complaint was constant fatigue
going on for twenty years. I also had severe peripheral
neuropathy, although I attributed it to another cause.
Repeated visits to my HMO came to nothing; basically
they refused to even give me a physical. Later without
insurance I visited a clinic in a smaller city. They had no
doctors, but a PA had the wits to order blood tests.
I suspected hypoglycemia, but the tests showed the
opposite: diabetes/hyperglycemia.

The PA wanted me to train for using insulin, but instead
I decided to try something else. I have long known I had
allergies, and I began monitoring my blood glucose while
rotating my diet. By eliminating milk and fruit I was
able to reduce my blood glucose enough that insulin
was no longer indicated. I was already on a grain-free
diet. Within a year I stopped all medication.

Since that time I have continued to experiment. There
is no doubt about it; fructose caused my diabetes.
It seems that I `can tolerate only about 500 mg per day.

I have only been reading this board for a couple of months,
but many of the tips here have been invaluable. I thought
I had tried every possible dairy product, but one member
here suggested aged hard cheese for HFIers who are so
sensitive that they must avoid dairy. I tried dry jack
and parmesian, and they are both OK.

I share with you a dislike of sweets, although some foods
need something to make them palatable. I have found that
dextrose works just fine for me. It is not as sweet as
regular sugar, but I like it better that way. I use
it in tea and also mixed with fresh lime juice for a sports
drink.

I have had hypos, but not often. One that I remember came
in junior high school. It was the first day of school
after the Christmas holiday. My foster mother insisted
that I finish a sweet potato casserole that she had
baked special, but no one would eat. It consisted
of sweet potatoes smothered in high fructose corn syrup
and topped with marshmallows. I could barely choke it
down. The next day I passed out, and I had to be carried
off the baseball field.

I am certain that the problem is hereditary; my biological
father and grandfather also had it. Since my kidnapping
at the age of six, I have been unable to contact them
for political reasons. What I have is some kind of
hereditary fructose intolerance, but possibly due to
yet undiscovered genes and different syptoms.

What I see in my BG monitoring is a rise in BG after
I eat sugar, then a fall, and then another rise.
The final rise lasts for weeks, so every small amount
of fructose I eat adds to it and gradually increases
my fasting and postprandal BG.

I have not yet tried this with pure fructose, but I
think I should. Five grams should give a noticeable
response and only moderate unpleasant effects of brain
fog, fatigue and higher "prediabetic" BG for a few weeks.
What I want to know is whether I have the short term hypo
that seems to be diagnostic for HFI. I have
given up on doctors.

On a fructose free diet My health has turned around completely.
I bounce out of bed at 4AM. My legs and feet are no longer
numb. My teeth stopped falling out, and my hair is growing back.
BG stays in the normal range from 75 to 95. I don't
have constant brain fog any more, just an occasional whisply cloud ).

Generally I eat the same things that all of you do.
But I have found that fermented or cooked vegetables
do not have much effect. Homemade sauerkraut has
become a staple, and I use fried onion flakes in
salads without problems. I note that cooked
fruit is much less sweet than raw fruit; I think
that must mean that some of the fructose is converted
into something else.

If HFI can cause diabetes (thus masking hypos), then
there may be many more fructose intolerant individuals than
we realize.

[charlie]

Hi Urmensch

welcome on board. wow, quite a story you have and I am glad you feel you are getting some answers.

I must say that sweet potato dish sounds revolting even to me and i don't have sugar problems- my daughter has.

One thing it may be worth getting done if you are in a position to do it is the genetic test, several new members seem to be trialling a new method but we don't know how accurate it is but it is alot cheaper than going through the hospital.

Where are you in the world, add it to your profile if you want as then people near you may give more specific advise as to help you can get.

It certainly sounds like you have a sugar related problem, the "fun" is working out which one as there are a number of different conditions.

I would doubt that HFI would cause diabetes as they are two completely separate problems, however there is nothing to stop someone having both conditions. diabetes is a pancreatic problem where insufficient insulin is produced whereas HFI is a liver problem where insufficient or no Aldolase B is produced to convert the fructose into glycogen for storage - to put it simply although it is much more complex than that.

Several things may have gone wrong though with you, one is that is they were only testing for diabetes based on the blood sugar levels then if foods set your blood sugars wrong then that may be why they thought it was diabetes. Also it may have been Type II diabetes which is diet triggered and that can be managed well with dietary changes if you are prepared to do it and that can come on later in life but can occur earlier, it is also frequently related with neuropathies. Candida is a bacterial problem that feeds off sugars and that can also create that exhausted hazy feeling.

So you may find that you have found a diet that suits you and keeps your blood sugars functional which is fantastic and then you can lead a happy and healthy life.

[ukbill]

Charlie I second your opinion.

An HFI could potentially have HFI and Type 1 Diabetes (which is genetic) but been as most medical professionals now realise type II is almost certainly caused by Fructose or a very high sugar diet this cannot be a problem for an HFI.

No one with HFI could survive long enough to develop type II diabetes, their liver, kidneys etc would give out long before that could develop into a problem.

Not sure if eating High levels of Glucose / Dextrose can cause Diabetes though. ??

Glucose will certainly cause problems for an HFI but that is because of the contamination with Fructose of the basic Stock ingredient that Glucose is made from.

[fred]

Hi urmensch

I have a question for you re your following statement.

Quote: My foster mother insisted
that I finish a sweet potato casserole that she had
baked special, but no one would eat. It consisted
of sweet potatoes smothered in high fructose corn syrup
and topped with marshmallows.

How are you able to buy High Fructose Corn Syrup?
Here it is very closely controlled.

You certainly don't seem to have the usual HFI symptoms. I would suggest that you see a good Endocrinologist and find out just what is going on.
As far as I know, and I'm not a doctor, all sugars, fructose, sucrose, any sugar will raise the glucose level when the insulin isn't being produced. In HFI, ingestion of fructose causes the glucose level to drop resulting in Hypglycemia.
Go find a good Edocrinologist.

Fred

[colormist]

Fred,
I think she might mean Karo syrup, which is corn syrup. It did have a run in the past where it had high fructose corn syrup in the lite variety, but they have since stopped using HFCS. My mom uses Karo when making some pies and holiday dinners. I never touched the stuff as it tends to make me gag.

[Tammy]

I agree with Laura that it was probably Karo Syrup. I know the web site says they used to put HFCS in the Lite variety, but I know for a fact that at one time ALL the varieties had it. I'm guessing they just don't want to publicize that fact. One time when I was looking for some pure corn syrup for Regina that was the first thing I checked.

Interesting note.........when I was a baby and there wasn't any commercial made baby formula, Mom was given a recipe to make formula for me. One of the main ingredients was Karo syrup. It was more "healthy" lol. Of course that was 50+ (gasp!) years ago.....

[shereebailey83]

500g tolerable?? Is this correct...? I have worked out my tolerance levels is between 0.5g to 1.5g at the very most a day!

[fred]

Thanks colormist

[urmensch]

Hi. I'll probably stop by once a week or so. Here are some thoughts on your replies.

You all have HFI which causes you to gag and vomit when exposed to fructose. I have
a congenital intestinal problem, and I rarely gag or vomit. That reflex is not uncommon
in severe allergies, but for every person who has that kind of fast reaction, it looks like
there are ten more who have slow and insidious allergic reactions that show up later
in life.

Yes, I am talking about type II diabetes. This is far more common than type I, and it
is becoming a serious epidemic. If none of you has this, then it only confirms my
suspicion that fructose causes type II. It is just that not everyone with fructose
intolerance has the gag-and-vomit symptoms. Those who do not may go on
to develop diabetes. This may be a different gene than the one they
test for. It may not be aldolase B.

In some ways you are lucky. It is much easier to spot something
that makes you ill right away than something that makes you ill after months
or years of exposure. Your dietary advice has been a big help; it takes
a minimum of two weeks for me to test a new food. Usually I need to go
on and off it several times before I know for sure.

Yes, it was Karo corn syrup in that sweet potato casserole so many years
ago. It sure tasted like HFCS.

I can tolerate 500 *milligrams* (mg), just as I wrote. I can eat one carrot
without a problem, but three carrots give me trouble.

I have given up hope a finding a doctor. If I am right, then they don't know
what they are doing re type II diabetes. I have more symptoms than
just high blood glucose. They all went away on a zero fructose diet.
Alopecia and nasal congestion are hard to quantify. With BG I now
have exact records that go back years. Doctors had no clue.

I will review your replies again and post again if I missed anything.

Thank you so much for your interest.

[urmensch]

Charlie
Yes I also had severe neuropathy along with type II, but it is going away now that my BG is
maintained in the normal range (without drugs).

This morning it was 71 which is a tad low.

[urmensch]

UKbill
I used the terms glucose and dextrose interchangeably. I was unaware
of the potential for contaminated glucose. The stuff I buy is labeled
"corn sugar (dextrose)" in the health food store. It possibly could be
contaminated, but it does not give me any trouble at all.

[urmensch]

fred
What I see is a short-term BG rise followed by a fall below baseline (which could lead to a hypo). This
is followed by an increase in the baseline that lasts for weeks. Everything I eat during those weeks potentially
adds to that increased baseline BG without having any telltale immediate reaction.

I just have a hunch that this may involve a certain kind of differential equation that describes thermal
diffusion across a potential barrier. I did some work on that years ago with semiconductors, and
the same situation is possible in biological systems. It gives rise to outrageously slow settling
times that are order 1/t.

[ukbill]

I have researched the manufacture of Glucose and from the patents issued and the manufacturing process they describe there is very likely to be a minimum of 4% "sugar" in all Glucose or sugar products produced from "corn".

Yes you would not ever see a reaction to this level because the lowering effect (speaking as an HFI) to an HFI's blood sugar level from the contaminating "sugar"'s fructose load will be swamped by the glucose.

However the Fructose will depress the blood glucose level after the Glucose has burnt off, giving a more pronounced "down" after the Glucose "high".

This is akin to the effect from taking Crack cocaine (or so I'm told by users) in that 20 min after taking some they feel so "flat" and "down" all they want is to get up there again.. Similar things have been said by HFI users of Glucose.

However the with HFI the Fructose that remains not only depresses our blood Glucose level (as I have stated) for a couple of hours or more depending on the Fructose load, also the breakdown products of the Partially utilised Fructose then cause damage to our livers and kidneys.

This is, I believe, largely responsible for the "brain Fog" which can last for days, we with HFI frequently complain of.

Not only is the basic stock Glucose produced from the "Enzyme" method almost certainly contaminated (Corn contains a minimum of 4% "sugar") it is made as a pre-mix before being converting into HFCS by the addition of a second Enzyme.

So all the manufacturing plant and filling out plant will frequently be handing HFCS and occasionally a batch will go through which is unconverted Glucose.. so you see the possibilities for additional contamination is great.. This is the best glucose we can expect to get made from "corn"

The Enzyme method produces a liquid Glucose.. the process to produce a solid for of Glucose (confectionery grade) is far more hazardous for HFI people.

The "ACID" method of production is used when a manufacturer wants a solid product.. this method results in a product that can contain up to 40% "other sugars" and yet still be sold as 100% pure glucose!

I am yet to find what the the difference is between Dextrose and Glucose.. however I can report that users of Dextrose complain less of problems with after effects than those who use Glucose. so far as I can see the difference is perhaps in purity.. a sugar solution which "twists a polarise'd light beam by a certain amount is considered to be Dextrose..

This is as much, so far, as I have been able to find out..

Type II diabetes is very common and becoming an epidemic now with children as young as 11 coming down with it. int he UK anyway and I hear reports form other parts of the world correlating this.

The one universal causation factor seems to be Fructose and HFCS in particular the more people consume of it the higher the likelihood of becoming Diabetic becomes.

Of course those of us with HFI will not be able to consume nearly enough Fructose to become a type II Diabetic.

We would be dead from Liver failure long before this could be an issue.

By what I have been told by Diabetic friends and Doctors I have discussed this with, there are no 2 identical Diabetics.. all have various differences.. however the Diabetic condition while not always controllable, is very well understood now, and I would strongly suggest you getting touch with a Diabetic clinic who will certainly know far more about your condition than anyone on this site.. we are not Doctors.

Also there is a high probability they have seen similar conditions and reactions before, if not then you will provide them with valuable new information which might well help other people who are having similar problems to yourself.

[ukbill]

I believe Diabetic's control their blood sugar by controlling the amount of Carbohydrates they consume.. and this is all carbs.. from any source and sugars of course as well.

I have never heard of a diabetic controlling their condition by adjusting the amount of Fructose they consume?? Many "diabetic" foods such as jams are made from pure Fructose!

This should not be too surprising really because Diabetics also have a lot of "sweets" made from solid chunks of Sorbitol which promotes fungal growth and dry itchy skin.. which is exactly what any Diabetic needs to avoid like the plague!

That too breaks down into Fructose so is not sugar free or calorie free as claimed.

By the way no we don't all gag and vomit when given fructose or sweet foods.

The Gaging and vomiting is a "Pavlovian response" which only kicks in if a child is given fructose containing foods at an early age..

Because its learnt response it can be overcome.

This protective response can be destroyed by parents feeding children Glucose / Dextrose or foods containing artificial sweeteners.

After which time the child has little to no protective aversion to sweet foods.

Unfortunately this is very common.

[urmensch]

One more point about diabetes and fructose

Diabetics use what is called glycemic index to control their blood glucose levels.
The glycemic index of a food is the area under the BG curve for two hours
after is consumed. This is normalized by dividing by the area under the
curve for pure glucose.

Glucose is absorbed directly into the blood where it can be used to supply energy.
Fructose is also absorbed directly into the blood, but it has to be processed by
the liver; this is what requires the aldolase B enzyme that is missing in HFI.
Fructose is first converted into fat, and then the fat is converted into glucose.
This takes more than two hours, so fructose looks better than glucose by
this somewhat arbitrary measure. Many authorities still believe this.

But if you could measure the whole curve going for weeks after
ingestion of fructose, you would see a different picture. Fructose
is eventually converted to glucose, but it takes a long time.

[ukbill]

No not so long.. about 20 min normally. Glucose is burnt off or stored as Glycogen within 20 min but Fructose picks up at this point.

This is for refined sugar not the stuff in fruit..

In Fruit the Fiber slows down the release of the Fructose so more is converted into Glucose and then into Glycogen and less straight into fat. (cholesterol.)

If no Fiber is present to slow down the absorption of Fructose then it is converted into fat as a "dump" instead of the normal Fructose > Glucose > Glycogen..

Dr Lustig's video "sugar the bitter truth" explains the metabolic process clearly and (after watching it 3 times) understandably

Although I am not absolutely certain I have it exactly right just yet..

[ukbill]

Quote:-
"which is exactly the same thing as dextrose and grape sugar. "

No its not..

Grape sugar is not in any way the same thing as Dextrose nor is it ever thought of as the same thing.

Quote:
"Apparently commercial glucose is not pure glucose, but corn sugar is."

This is a common misconception.

Confectioner Glucose (that used in making sweets) which is solid as manufactured, is up to 40% "other sugars" and still sold as 100% pure Glucose.

"Corn sugar" is just made using a different manufacturing process but from the same basic ingredient.. Sweet corn. which contains at least 4% "sugars" this is not converted or removed in the manufacturing process.

Hence the minimum Fructose content of Glucose made from Sweet corn will be more than 2% (assuming this "sugar" is sucrose not pure Fructose as it may well be)

This results in a product that is a liquid not solid and it is very difficult to make it into a solid.

Most of this is then converted on into High Fructose corn Syrup by the addition of a second enzyme, and then pumped through the same pipes as the "corn sugar" / glucose and on through the same filling out equipment as is used for HFCS..

Hence all Glucose has a very high possibility of significant contaminating with Fructose.

As you pointed out the two sugars are very similar in chemical formula hence it is very difficult to detect levels of Fructose in Glucose the margin of error on testing equipment is quite high, well above what is safe for any person with HFI for certain.

The definition of Dextrose is a solution of sugar that twists polarized light by a certain amount..

That is all I have been able to find out about it.. it seems safer for HFI than any other form of sugar (except Lactose) and it seems to be naturally a solid unlike Glucose.

Apparently some Glucose if left in a solution of water for some hours will then "convert" to dextrose.. without any other chemical being added?? I am really not sure about this need to research it much more when I get chance.

[urmensch]

Far be it for me to argue with a God, but your post upset me so
much that I have spent the last year and a half studying biochemistry,
biology and physiology at a local college. I was lucky enough to have
one just down the street that generously allows seniors to audit their
classes, These issues are a matter of life and death for us, and my
electronics engineering background was simply not adequate.

The matter of exactly what is "corn sugar", "grape sugar", "glucose"
and so on are defined by government regulations. These regulations may
well be different in the UK. If you want to buy glucose in retail food
channels in the US, you will have to buy dextrose. Dextrose is defined
to be glucose.

It is also true that dextrose rotates light in a certain way, and that
other sugars also rotate light in this way. All the same in food retailing
here corn sugar is dextrose and dextrose *is* glucose.

Sugar chemistry is incredibly complex. Hexoses like fructose and glucose
are so reactive that they react with themselves in water to form three
chemically distinct molecules in equilibrium. In a solution with high
pH (alkaline), glucose spontaniously forms fructose, and both of these
molecules exist in all three of their forms. The most common simple
lab test for the presence of sugar uses a highly alkaline reagent, and
for this reason even some chemists think fructose and glucose are the
same thing. In neutral or acidic solutions fructose and glucose remain
distinct.

Another important fact is that while corn *sugar* is glucose, corn *syrup*
has a high fructose content. To make either they start with corn starch
(no need to pay extra for sweet corn). They hydrolize the starch to form
glucose. If they want to make it sweeter, they enzymatically convert some
of the glucose into fructose. This is "high fructose corn syrup". Either
product can be found in granulated form. I have both granulated fructose
(for experiments, not eating!) and granulated dextrose/glucose in my pantry
right now.

Hydrolysis is the most common reaction in biochemistry. It is what your
intestines do when they digest starch. Starch is a polymer of glucose
molecules linked together in a certain way. So when we digest starch,
we convert it to pure glucose. This is why we can eat starch but not
sugar. Starches digest into pure glucose, but sugars almost always have
fructose or galactose in them. If we were intolerant of glucose, we would
be dead.

I urge any fructose-intolerant person to study biochemistry. There is▒
so much misinformation current that it could save your life.

[Tammy]

Just for the record - the only thing on here that makes you a God is having a big mouth. It goes by the number of posts you have. Your status will change as you post more. I'm not sure but I'm thinking you become a "god" at 500 posts. So that means that we gods don't necessarily know anything more than anyone else. We just have a big mouth or a big attitude or a big ego....lol.... (and some - like Colormist - actually know what they are talking about)

[charlie]

Hi Urmensch,

I like how Tammy has described it..... Says it all.

However I will say, Bill, bless him, has his theories, his ideas, and as you have probably noticed don't always match other peoples. sugar, glucose, sweeteners etc are very high on that list.

The important thing to remember is that none of us are professional experts, we are just normal everyday people with probably alot more experience of dealing with these conditions than any professional expert. But that doesn't make us right on everything. So, as we say to everyone, this is our opinion, it is up to you what you do with it.

BTW, we gave up arguing with Bill on the matter.......