Health problems HFI Question

[CJSculpts]

Good point Sandra. Because the diet is soooo restrictive, sometimes it is good to know what can be tolerated even in little amounts. There are some things that may contain trace amounts of bad things when eaten in micro-bites. This sort of thing goes a long way towards making life more palatable. Or maybe that's why I'm not 100% better. LOL!

[colormist]

The thing about the balanced fructose to glucose ratio being tolerated with HFI is that it may be tolerated AT FIRST. You don't feel sick right away--your body is too distracted by digesting the things that it can digest. The problem is that there's still fructose there and your body still can't process it. So you might feel sick a day later or 12 hours later or whenever you've stopped distracting your body long enough so that it can deal with the fructose that's in its system.

I'm only speaking from personal experience. I've noticed that glucose (when ingesting fructose) helps to calm the nausea, but I still feel miserable in all the other way HFIers feel miserable from eating anything with fructose in it: kidney pain, brain fog, hypoglycemia, general weakness, etc.

[chrisnyc]

hfi-ers, can u eat wheatena? we used to when we were little and it never bothered, just wondering what others experience has been?
what about grape-nuts? I stoppe eating it long time ago but was fine on it as a kid. I know these are whole wheat that's why I ask...
perhaps the processing change smthg

[chrisnyc]

or what about spirilina, chlorella, blue green algae and seaweed? might be a good way to get extra nutrition. they do have carbs but can't figure out from what...

[CJSculpts]

Thanks for clearing that up Colormist, good to know. This may be one of those things that work better for FM than for HFI. Thinking it through I can see how the different mechanisms, transit time, etc. would create the effect that you are referring to.

I have been meaning to ask you about the kidney pain. What does yours feel like?? During the period when all of my kidney function numbers were wonky, I had a few episodes of back pain. First it was dull burny achy pain. Then I had one really bad night with shooting searing pain. I got up in the middle of the night and did a face plant (fortunately partially back onto the bed) because the pain was so bad that I could not stand. Adam finally woke up after five minutes of me sobbing into the pillow. This was a good thing because it was getting a little hard to breathe but I could not lift myself back up to save my life. The nephrologist told me that it is extremely rare to feel pain from your kidneys.

Chris, I have never heard of Wheatena but I would think that Grape nuts are out. I really would recommending getting off of all potential triggers including regular wheat for a few weeks before you start adding things in. I do not know about spirulina and algaes. I had a bad roommate experience with them so the thought of them make me shudder. On the other hand, if you look at my embarrassing "psychic" story, you will see that I am obsessed with seaweed. My nutritionist said probably not but made one of those "I am not really sure so I am going to guess faces" first. I have been eating tons of it & have been fine. If you are interested I can send you some book titles to learn about the different types & about some recipes. I forgot to leave one huge part of my diet off of my earlier list - avocado, nature's perfect fruit. Not everyone here can handle them though so you might wait.

[sarosh]

Dear Chris,

I am 53 and I seem to be falling apart now - I have tendonitis, Heberden's nodes, back pain, low energy levels, endometirosis and sudden weight gain. I have been doing a lot of research and I agree with you that acidosis seems to be the problem ( I had been chewing a lot of sugar free gum and being Indian, most curries have tomatoes). What do you do to treat acidosis?

[colormist]

My kidney pain occurs in my lower back, just above my hips. Right where your kidneys are located. It's hurts right beside your spine (on one side or the other). It should be a constant or throbbing pain that doesn't change when you move. It goes away after you drink a lot of water/green tea.

I had kidney pain as a teenager and my mom made me stay home from school. She thought I had a kidney infection or stones. We went to the ER that night, but by then the pain was gone.

Sarosh, I don't know anything about acidosis, but I'd also be interested in hearing about the treatment.

[elilly]

My understanding was that the acidosis should resolve once the fructose is removed from your diet. At least this was the case with our son.
Back again to the cane sugar, fructose to glucose ratio. HFI people should not have cane sugar period. Some DFI people believe that IF a food has more glucose than fructose, it will not cause as many problems. However, this is not the case for HFI.

[CJSculpts]

Hi everyone.

The uproar and confusion caused by my typing errors in my earlier post has really been gnawing away at me me so I have modified the post slightly. I know that this is a little strange and might make some of the follow up posts a little confusing but I am more concerned that, had I left the post with my original sloppiness, somebody might come along in the future and get misleading information if they just read up to that point. I do realize that I was corrected and tried to clarify further myself but I think that it might be difficult to follow the thread unless you already know the answers. I would hate to be unintentionally giving someone the wrong information.

Just posting this little note as a disclaimer so that no one gets further confused.

Again, I am truly sorry if I offended anyone through my sloppiness!!

[julienc]

Jan 16, 2010 17:17:32 GMT -5 CJSculpts said:

Hi everyone.

The uproar and confusion caused by my typing errors in my earlier post has really been gnawing away at me me so I have modified the post slightly. I know that this is a little strange and might make some of the follow up posts a little confusing but I am more concerned that, had I left the post with my original sloppiness, somebody might come along in the future and get misleading information if they just read up to that point. I do realize that I was corrected and tried to clarify further myself but I think that it might be difficult to follow the thread unless you already know the answers. I would hate to be unintentionally giving someone the wrong information.

Just posting this little note as a disclaimer so that no one gets further confused.

Again, I am truly sorry if I offended anyone through my sloppiness!!

No worries! And no offense taken here!

[Deb Mc]

Hi,

I just found this board and stumbled upon this post Several things I'd like to address.

First off, the HFI DNA testing is not definitive. If you test normal, that does not mean you don't have HFI.

I recently diagnosed myself and my sons w/HFI. My diagnosis was confirmed by Duke University via a fructose assay. My family and I had the DNA testing done first but we all came back normal. Apparently, we are among the 20% for which the carrier gene remains unknown. Boston University is now continuing the search for the carrier gene in my family free of charge as part of their on-going research.

Secondly, a low fructose diet such as the examples provided on Boston University's website doesn't work for everyone. My older son and I canNOT have any form of fructose in any amount. In short, all we can eat is unprocessed and unseasoned meats with no additives, egg whites, white rice, tapioca flour, pure dextrose, unflavored green tea and certain dairy products. To balance our diets and correct a lifetime of nutritional deficiency we take 30-40 different supplements a day.

My sons and I have suffered serious complications due to physican failure to diagnose. Our HFI went untreated for decades. My son's neurological complications started manifesting at age 4, along w/chronic hepatitis and nephrological problems to name a few others. He's now 27 and permanently disabled.

I've had muscle problems since early childhood and those worsened over the years, not becoming disabling until my 20's. Those conditions include spasticity, hypertonicity, myofascitis, chronic tendinitis, edema, neuritis, a diabetic-like neuropathy, early onset arthritis, contractures and recurring subluxations and dislocations in most joints. Up until just a few months ago, I had to wear compression sleeves and braces on my joints to try to stabilize them and mitigate the damage to tissue. I didn't know from one minute to the next if I could use my hands, walk or even move. I'm now 52.

Upon eliminating *all* fructose from my diet, all the above either resolved or improved dramatically, I'd say 85-90%. The residual issues could be due to malnutrition from long-term malabsorption and nutritional deficiencies. I had multiple, Third World-like deficiencies, most of which were severe and this was prior to going on a fructose free diet. Now if I accidently ingest even a smidgeon of any form of fructose, I regress and turn back into a giant contracture with living rigamortis and the metabolic acidosis returns with a vengence. I think the metabolic derangement is caused by chronic fructose poisoning.

Funny thing - my sons and I were also diagnosed with Ehlers-Danlos Syndrome Type III (EDS), a collagen defect. The diagnosing rheumatologist used the Breighton Scale to evaluate us and said he was 100% certain we have EDS. That our "EDS" responds to and resolves with a fructose-free diet suggest it and HFI, at least in us, are one in the same and not separate clinical entities.

What are the chances of a person (me) inheriting two different genetic disorders, one of which is recessively transmitted, and then passing both of those on to both of her children???

I now wonder if EDS 3 is not stage 2 of untreated HFI in those of us who survive and have the particular variant my family has. Again, in 20% of HFI cases the carrier gene is unknown. Interestingly enough, EDS 3 is the only type of EDS for which the carrier gene remains unknown.

Unlike most of you, my sons and I crave sugar, still do. I think it's the hypoglycemia and ATP depletion. My muscle biopsy abnormalities included mitochondrial proliferation, which can be caused by ATP depletion which is associated w/HFI, another complication of being left untreated. If I don't take in enough lactose and dextrose, I still get hypoglycemic, especially at night when I'm sleeping, just like if I ingested fructose.

I'd be very interested in hearing from any others who have the "flip side" of HFI (crave sugar) and/or have had complications (e.g. neurological, nephrological, liver or muscle/CT) from it being left untreated. My sons both had classic symptoms the first several years of life but they were overlooked by dozens of physicans who seemingly found it easier to dismiss than to investigate. Then the various complications began manifesting, further complicating our cases. Anywho, I'd like to touch base and compare notes with other HFIers who, like me, aren't among the 80% with the known mutation. Feel free to PM me at debmcqueen (at) hotmail (dot) com.

Deb Mc

[ukbill]

Perhaps off message but regarding testing..

In the UK the diagnosis test is quite simple (if done right) and I would think do-able at home.

HFI people get a strong drop in blood sugar (Glucose only) after ingesting (eating) fructose, or after sucrose (sugar, cane or any other "normal" branded stuff).

However with Sucrose (which is a mix of Glucose and Fructose) firstly our Glucose blood sugar level rises as the Glucose part burns off (the body uses this first) then after about 20 to 25 min the Fructose "hits" causing our Glucose blood sugar level to crash.. mine drops below 2.5!

OH God that hurts when it hits!

I will try to get the loan of a glucometer from my doctor and see if a self diagnosis is possible.

When I was diagnosed in hospital in 1981 they got the decimal place wrong and gave me 100 times too much sugar! straight into my veins! dam near killed me and gave me 12 months of near hell recovering.

So lets not get silly with the amount of sugar or fructose we test ourselves with.. for me eating 2.5g of sugar is more than enough to get a reaction particularly if I have not eaten for 12 hours or so first.

My base level 12 hour starvation bloods sugar level is 5 rising to 10 or 11, 20 min after a good feed.

I would be interested in other peoples levels.

A good note about getting older! Apparently over the age of 40 or so our natural base level of blood sugar rises.. I have certainly noticed a far great ability to miss meals or certainly not eat "by the clock" now as I used to have to do religiously so I had enough food to digest and supply my blood sugar.

So something at least to look look forward to in older age.. Fred have you noticed any improvement??

[ukbill]

Reference HFI craving sugar.

I hope I got the chemical process right here ..

During the breakdown process of sugar (glucose in our case) Serotonin is produced in the brain.

This is the feel good chemical (if I remember right the same stuff as Ecstasy (an illegal drug) causes to be released in to the brain in huge amounts)

So being HFI means we do not get naturally a "sugar rush" as "normal" kids call it because we do not eat sugar containing things..

Also if we do not have enough food to digest then our bodies like every "normal person" switches to our stored reserves.

I am a bit hazy on this but I know the liver keeps some fast acting reserves and the rest is body fat converted back into blood sugar so please do not flame me if I got this wrong.

However like every "normal" person the conversion process creates 2 sugars.. Glucose and Fructose so we poison ourselves!

The knock on effect is of course to reduce the level of Serotonin in the brain.

Hence under the description of symptoms of HFI depression is listed as common.

Taking Pure Glucose therefore boosts blood sugar and will give a massive sugar "RUSH" (massively increased serotonin levels in the brain)

This is of course addictive (who doesn't want to feel great and like superman even for a few moments?) and I would suggest why HFI people who go down the eating Glucose route seem to get addicted to the stuff.

I will not go into the increased risks of diabetes caused by a high sugar diet or the effect on teeth caused by eating Glucose.

Let alone the loss of ability to detect low levels of added sugar to foods and the overall damaging effect to peoples overall health as a result of constant low levels of Fructose intake, as this sets some people off and I get flamed!

However I cannot see or accept that "Cultural" (from a previous flame message) as any defence for feeding sugar (glucose) to HFI children who don't need the stuff.

If we HFI'ers keep to a very low fructose diet then depression or low serotonin levels should not and is not a problem.

Yes I have had a few short problems with being depressed but these were as a result of normal life experiences .. such as the sudden death of one child and the slow death of my sister (and who wouldn't be depressed?) and not from being HFI.

I think I can hear the flame messages flying towards me already!

Oh dear..

Only trying to help here folks !

[CJSculpts]

Just got a glucometer because I have felt like I have been crashing like crazy since starting the diet. Still need the calibrating juice. my pharmacy is terrible these days. I will let you know what happens. I am still waiting for my test results from Tolan, but either way (HFI/FM), it could be interesting to know.

[CJSculpts]

<---wearing my shades for protection against oncoming bill flaming.

Not sure if the facts are exactly right (I do know that they are least close if not right) but I liked what you said & how you said it.

[Tammy]

I'm probably the biggest "flamer" going. Bill and I don't always see eye to eye. lol. I won't even mention the things that we disagreed on before as both he and I have opinions. Neither is right or wrong, we just don't agree on some things.

But one thing I do want to say........Please DON'T try self-diagnosing your kids. You're playing a very serious game with trying to drop your sugar levels that low. In my opinion, testing is something that should be done by Drs under supervision. In the past there have even been some parents that ended up rushing their kids to the ER when they would crash. Not a game I'd want to play.

[ukbill]

Feeew! Thought I'd get burnt out a lot more for that one..

CJSculpts.. what me flame you .. no I have a thick skin anyway. and some would say head too.. ;D (yes Tammy??)

Fred.. what me need encouragement?? Hardly mate regarding type of sugar.. no idea I just used the standard issue Glucometer from the Doctor as issued to Diabetics.

I will ask and get back to you.

Thinking it should measure all sugars in blood because for Diabetics its the total sugar level not type of sugar that is important.. so my idea might be destined for the bin.. pity its a good one.

Also on reflection (i did do self testing 20 odd years ago) I am not sure I tested a crash.. the bloods that showed a drop to below 2.5 were done at the hospital and the blood was sent away for testing.

However the Glucometer was accurate on 12 hour starvation with a level of 5 (the same as obtained by the hospital when I was being tested)

When I crash there is likely enough Fructose in my blood to keep a "norm" running on full throttle.

However the liver only measures total sugar in the blood not the type, so the body naturally drops the level of Glucose being released to stop the blood getting too thick and sticky by having far too much sugars in it.

But because we cannot use this sugar (fructose) we crash as there is then insufficient Glucose in our blood to carry on as normal.

This would also explain the slow (over 2 or more hours) recovery as the Fructose is broken down by the liver, into poisons rather than energy hence the "burning " damage done to our livers if we eat far too much foods containing Fructose.

Yes "norms" do have at least 2 sugars in their blood.. Glucose AND Fructose which is why I'm paranoid about getting injured and being given a blood transfusion.. IF the doctors do not boost the blood with extra Glucose I'd be really in the smelly stuff (wooden box and earth)

I ride a motorcycle hence paranoia..

Tammy who's trying to drop their sugar levels that low??

Not me, nor have I suggested it.

No what I said was this is what my results are.. I am simply interested to hear what other peoples results are..

As for testing kids.. I agree no need to feed them Fructose just sample them when they look like they might crash or when they do.

And they will! No matter how diligent you are I cannot see how to balance out a very young child 100% of the time.

For example simple exercise can bring on a crash.

I am not saying this home diagnosis is a definitive test but possibly a very good pointer.

For example if an adult or child crashes and still has high bloods.. in the region of 5+ then HFI is probably not going to be the professional diagnosis at the end of the day either.

However the whole idea of self testing is on hold till I find out which sugars the standard Glucometer measures and if a specific Glucose only Glucometer can be obtained.

I await your response (s) with trepidation..

[colormist]

Hi Bill,
I'm also going to jump on the disagreement wagon. I think a person's individual history of food preference and avoidance over their whole life is more than enough for anyone to determine a self-diagnosis. Intentionally ingesting any amount of fructose to determine their blood glucose levels is not healthy once you have any sort of inclination that you might have HFI. It's safer just to schlep off a swab for DNA analysis first. It might be much more expensive, but definitely safer and more definitive.

[charlie]

I'm going to join in too, as far as I am aware the blood glucose meters are measuring the glucose content of blood, however the home ones are far from accurate usually, I did use one on Megs last summer and it read high glucose twice but there may have been a trace of powder on her fingers or the strips were wrong but a while later I did it and it read OK.
On the subject of doing it on Children I wholeheartedly agree with Tammy, it should never be done at home. Not sure what other countries are like but here in England you could end up in serious trouble if things went wrong and your child ended up seriously ill in hospital. Admittedly she was extreme but there was a mother jailed recently who kept saying her son was diabetic and tampering with his urine samples etc. She did go too far and convinced doctors to put a gastric feeding tube in etc and there was nothing wrong with the child but you have to be so careful what you do as cases like that make medics very suspicious of genuine cases as our school nurse advised me about testing megs at home.
Also bill, have you ever tried doing a pinprick test on a child - forget it. It is extremely traumatic for child and parent if they are little. I did try it and wished I never had, in the end I had to wait until she was fast asleep and even then she woke up and screamed at me. No far better, no matter how frustrating it is to let the medics do it properly. that said feel free to prick yourself as often as you like!!!!! But unless you are diabetic there are so many other factors that may affect readings you will probably find it inaccurate but it may warn you if you are heading for a major hypo but one would have thought by then your body would be screaming at you anyway!!!

[ukbill]

Goodness me NO!

NO not suggesting feeding sweet things to children so we can test them..

If I have mistakenly inferred as much then sorry, my mistake.

Anybody who has read my threads knows that I am VERY much against feeding anything sweet tasting to children (particularly Glucose) so they can build up a good healthy dislike for anything tasting sweet, and so self protect themselves.

As I have said it is not needed anyway, just test them when they are "down" as they will be on occasion, naturally.

For adults and older children it should not be a problem unless their condition is critical.

Just eat a little of what gives you an adverse reaction and test when feeling slightly ill.

However not sure if the diabetic Glucometer (as supplied by a doctor) tests specific blood sugar or all present sugar in a blood sample.

So the whole idea might be on the scrap heap yet (unless we can test for a specific blood sugar).

So I will find out and report straight back when I get a definitive answer!

I am presuming a "normal GP doctor" will not know, so I will have to find the manufactures of the devices and speak to their technical departments. My Quest starts Monday 15th Feb!

On the option of shipping a sample off for DNA analysis, is this available in the UK and the rest of the world? If so where? Also by what I have read its only 80% reliable anyway.

So my search for a simple quick way of identifying a potential HFI still stands.. yes of course send your sample off for DNA testing by all means.

But a 3 month wait to find out if you might at last have found an answer to yours or worse still your babies health problems, or need to keep looking seems far far too long to me.

Keep smiling..