Thank You Fred

[ukbill]

Fred, a very long standing member, has recently "retired" from the Group.

For the last year or so Fred has been acting as a moderator and has done sterling work tiding up the site and removing spam postings which occasionally pop up.

Fred is possibly the oldest person with HFI, we currently know about, and also probably the most medically examined, which made his postings very useful and highly informed.

He will be missed by all of us I'm sure..

He is the first person I spoke to who also has HFI.. it was wonderful to know I was not alone!

Fred has been a calming influence on the site on many occasions either by a quiet PM or by a reasoned, thoughtful posting or two.

Fred is you ever read this..

Thanks!

Bill A.

[charlie]

Well said Bill. I second that. I hope fred will pop in when he can though.

I did notice he had gone white - thats obviously what happens when you retire!!!!

[esmee]

Can anyone tell me why all of his former posts were deleted from the discussions? It is such a shame not to be able to read his discussion comments which everyone found so useful.

[Fred]

There is one of my posts in the "How were you diagnosed?" section of this Board but that is the only one I left here. I deleted the rest.

I just got plain fed up with people who thought they had HFI but had never been diagnosed by anyone but themselves. People who think they know more about HFI or don't even want to listen to what folks who have actually been diagnosed have to say. Also people who don't read the posts of those who have to live with it every day. These are the only ones here who know what it is really like.

In addition to the members that actually have HFI we have had folks join this group that were Medical Writers, and even a Professor of Bio-chemistry and still we get new people joining who don't want to believe anything they read.

People with HFI who continue to eat things that don't taste sweet and that contain small amounts of fructose are simply doing themselves harm very slowly as even small amounts of ingested fructose present attacks on their liver.

People who think they may have HFI should get tested. There are only two tests currently that are 100% and they are Fructose Challenge or Liver Biopsy. The DNA test is still not 100% so if you get a negative reading you still do not know for sure if you have it or not..

Fred

[esmee]

Thank you Fred for your response.

I trust you did what you felt was best. I just wish I could have benefitted from your posts, as everyone who commented on them really seemd to appreciate them.

Anyways, I do not have a diagnosis yet, but plan to start with the genetic testing first since it is the least invasive. If it is negative, I will decided which of other two tests to take. The enzyme assay will tell me more, but it is considerably more invasive. In the meantime, I will do my very best to avoid fructose as much as possible.

There seems to be a lot of variation among even those who do have definitive diagnoses on what they can tolerate, and I can only assume that this is because there are genetic variations of this disorder, with some folks having zero tolerance for fructose while others can handle very small amounts.

esmée ♥

[charlie]

Well said Fred, thank you.

This is a great board full of experienced information but it is very hard when people join thinking they have HFI and then start posting as "experts" as some of their information maybe wrong, and their approach maybe "wrong".

When you or your child are feeling unwell you desperately search for answers and then grab at anything that makes sense. I know, because I have done it. Meg has had lots of tests for things that when they described the symptoms of these conditions it so makes sense, until the results come back negative and you start again, then you come across another disorder that so makes sense but turns out negative and so on and so on and so on. But you do need that definitive diagnosis to treat yourself or your child safely and correctly.

Lets face it, the HFI diet is dangerous if you don't do it properly or you haven't got the condition due to the limitation of essential minerals and vitamins in the diet esp Vit C. If you have HFI and you "cheat" you risk damaging your liver and kidneys. I think there isn't a different level of tolerance if it is HFI its just some choose to ignore or aren't body aware enough to pick up the symptoms or learn to cope with them - after all its their body, if they want to poison it its their choice.

But if you don't have HFI, and alot of people think they have and actually have the malabsorption problem then they risk inaccurately informing others on this board, which is why I started the malabsorption board. Malabsorption problems are much more common than people realise, we assault our bowels from such an early age these days that they just can't cope, also people are more aware of malabsorption problems nowadays and jump into this category very quickly. But that can be no bad thing if it means they eat more healthily, but they do need proper diagnosis to do it longterm.

Why are we still on the board? A)because I thoroughly enjoy the company esp the core members, its a comfortable existence of support which helped me through a very low time.
B) Megan hasn''t had a full diagnosis that it isn't HFI as they don't seem to do that here, the diet changes with the fodmap diet though do seem to be improving her in some ways but is still reacting in other ways so I am keeping a very open mind and doing what I think is in her best interest until they make up their mind and for four years I followed the HFI diet religiously with no cheating and she has done well on it and turned into a tall, beautiful girl with a wonderful complexion to the extent that now when I tell people she has a problem they look at me very strangely. But she still has issues and these are still (slowly) being investigated properly by the medical profession.
C) Having studied this diet religiously for four year I consider myself nearly an expert on it by default, ie I don't feel the symptoms but have witnessed them first hand. Rightly or wrongly.

When I first joined this board I was probably a complete pain in the ****. I didn't have a clue what I was doing, exhausted, stressed up to the eyeballs and was looking for answers to something that my doctor had suggested as a possibility and it all made sense but I kept an open mind as anyone without a definite diagnosis should. I think I had a major fallout with someone early on I seem to remember now, can't remember who it was now, it was one of the males on the board. But then I calmed down, then I left for a while as there was someone who took over this board with alot of very strange posts and as the medics had said Megs categorically did not have a fructose problem and to put her back on a normal diet and I lost the will to read all her posts. But I shouldn't have left, and I think alot of others left for the same reason at this time, which is why "undiagnosed" must post carefully. Meg became very ill and they started to listen to me and at age 5 they decided she probably had HFI and to do the diet, she improved massively. Now they think it is more likely FM because her liver is OK, but is that just because they tested it a year after being on the diet? But I go with their advice cautiously so as not to limit her diet unnecessarily.

So anyway, I am going to stop rambling but I do endorse what Fred says that people must be careful assuming they have HFI just because the symptoms fit, and be careful what advise they put on here whilst they are looking for answers. Whilst the relief of finding a possible answer is great you have to remember that others joining the board may misinterpret the information.

Sorry to bore, are you all asleep yet?! Thank you for listening!!!!

[esmee]

Great post Charlie. Not boring at all. I appreciate you taking the time to explain.

There are a lot of unknowns about HFI and I think this can definitely lead to confusion.

I think a proper diagnosis is very important and I will persue that as soon as I have the money to do so.

I think the frustration for many of us is that we have been to so many doctors for our symptoms over many years and no doctor has ever been able to tell us what is wrong.

I have seen some very good alternative minded-physicians over the past 20 years, and none have them have even mentioned fructose malabsorption let alone hereditary fructose intolerance as a possibility. if FM is potensially present in 30% of the population to some degree or another, then doctors lack of knowledge of this is truly appaling. my experience has caused me to lose "faith" in doctors being able to help me much, and i do not believe that they are some sort of God who must put their stamp of approval on whatever is actually wrong with me. But if I do, in fact, have HFI then I need to know so I do not continue to poison myself with even tiny amounts that I may seem "to get away with."

But you and Fred and others who are confirmed HFI-ers are correct in that those of us who have not been diagnosed yet should be careful to state that in our posts here. I am defintely fructose intolerant to a major extent and eliminating fructose IS the "medicine." So, being able to participate and listen to others experiences, what they can and cannot eat, who are struggling with this disorder is very helpful.

esmée ♥

[Tammy]

Charlie, nice rambling. Very well put.

I agree with all you said except one point. Different people DO have different tolerances. The reason for this is simple. We all know by now that HFI is adolaise B deficiency. It is a deficiency not a depletion. Some people still produce very slight amounts of it, therefore they can tolerate very small amounts of fructose without doing harm to their liver. Others produce next to none at all, resulting in not being able to eat any.

This is also why we always say start with a completely fructose free diet until you get your system cleaned out. Then you can find your tolerance levels.

Regina has a diagnosed HFI. But she is one who produces just a slight amount. She is able to eat a spoonful of broccoli once in a while. But if she eats more than a couple of bites, or eats it too often, she will have a problem. These are things that are helpful to know for "special" times. She loves a cup of broccoli soup. So we just make it skimpy on the broccoli but still with enough to have the taste and she's good.

[esmee]

Thank you very much for your input, Tammy!

[charlie]

Hey, thanks for that info Tammy,

I didn't realise that at all, I just assumed you didn't have it at all as that is how I read the word deficient. That would certainly make sense though about different tolerance levels. And it just goes to show how important it is to make sure you have the right info on here!!! I'm relieved I only proclaimed myself "nearly and expert", not an expert as I though I had!!!! LOL

Esmee, you ought to look into the low fodmap info. The problem is that until recently people were thought just to have IBS or be neurotics, now they realise there is more to it and how to test for it, its just a case of medicine advancing slowly. The low fodmap diet has only hit Britain in the last few years, I asked about it 2 years ago and was told not to use it, then was surprised to be given it last summer!!! It was developed in Australia and works on the short-chain carbohydrates that may cause bowel problems.
FODMAP stands for Fermentable Oligo-,Di- and Mono-saccharides and Polyols. so this includes Oligosaccharides that are fructans in wheat, onion garlic etc and galactans in legumes.
Disaccharides are Lactose - milk sugar, and Monosaccharides are fructose. Polyols are sugar alcohols ie the -ol sweeteners.

Looking at your profile listing your intolerances you are ticking alot of boxes, and the consequences of eating these long term (and as a vegan you would have been doing this) can be very debilitating.

google Sue Shepherd, a dietitian in australia, she has done alot of research on it.

[esmee]

Thank you for your suggestion to look at the FODMAP diet, Charlie. I have done so and there certainly are similarities with foods that bug me. However, there are also foods on the list that are to be avoided that do not bother me at all and things that are listed as okay that definitely are not okay for me. My very worst symptom is severe low blood sugar within 30 mins to 3 hrs after eating anything containing fructose. I do have GI symptoms, but they are not my main problem. I am planning to start with the genetic test just to see if I am one of the 80% of HFI-er who test positive. If the results are negative then I will have to decide between the fructose enzyme assay or the fructose challenge test. I know for a fact that the FCT will cause a major blood sugar crash, nausea, vomiting, and severe migrain headache. So, neither option is very appealing. One step at a time. I will be AMAZED if I do not have HFI, but the proof will be in the pudding as they say. I suspect that if I do have HFI, I may be one with the ability to consume a very small amount of fructose without suffering ill effects, but that would require the enzyme test to determine.

[ukbill]

esmee

There is a way of self testing.. if you get a blood glucose meter.

Simply test your blood sugar level after not eating or drinking anything nutritious for 12 hours.

Then eat something small that contains enough sugar to give you a reaction.

Test your blood sugar every 5 min after eating and watch / record the results.

If you have something that contains sugar then your blood sugar should rise slightly for the fist 20 min then crash as the fructose hits.

If you have pure Fructose it should crash after about 20 min without going up first,

I know I might get flamed (not the least by Fred) for suggesting this but I am not proposing you give yourself a massive dose of Fructose or Sucrose, just enough that will give you a reaction.. and no one will know that level better than you do yourself,

Also unlike if you are in hospital having the test done you can give yourself weeks between tests to let your liver recover.

I would suggest having something nice and safe to eat available for after about 45 min by which time your blood sugar should be returning to the normal "resting" level.

As each of us seems to have differing tolerance levels it would also mean you are only dosing yourself with the minimum to give you a reaction, and not a "standardised" level used by a hospital which might cause you real problems.

This method should be discussed with your doctor if you have any doubts in case your liver really is already in a very bad way.

Edit..
Okay as suggested a legal disclaimer.

If you decide to "self test" using the method I outlined above I cannot be help personally responsible for any side effects, illnesses or other short or long term medical traumas that may occur as a result.

In short, its your life, if you decide to test or not to test, your decision your responsibility.

End of edit.

Hope this helps?

[esmee]

interesting idea, ukbill. i will give this some thought. i have been wanting to get a gluco-meter for a while just to see if i could discover anything before i stumbled upon HFI and this site (thanks to gretchen).

i actually have an appointment with my doctor tomorrow to go over all this stuff with him and have him order the genetic test. i may not have the money to send my blood to dr. tolan for a few weeks though, and i guess i could try your idea. it certainly won't kill me and could be informative, though i am quite certain i know it will make me feel bad. i think i would want to use pure fructose for the test and would do it first thing in the morning (like you, i HAVE to eat in the morning, or i will be sick the rest of the day) to make sure there are no confounding factors.

[charlie]

Ummmm, careful with this plan, as I fear it won't actually help you still distinguish between malabsorption and HFI, just that you have a problem with sugar. As if you have malab. then you may use all your glucose absorbing the fructose.

As for tolerance, just because its on the ok list in the fodmap doesn't mean everyone can have everything, Meg is very reactive to stuff on the ok list so I only give her little bits, if you are very reactive you still have to limit most things. Like I said, its still a very new idea so I suspect still needs tweaking.

[esmee]

Hi charlie,

the fact that your daughter reacts to foods on the no list is more of an argument for her possibly having HFI, than for me not having it.

hypoglycemia is not listed as a symptom for FM on the Wikipedia page about the illness, therefore, I should think ukbill's protocol would still be very usefull for making a preliminary diagnosis without putting a person in any real danger.

just my take on it.

esmée ♥

[charlie]

Yes, Meg may still have HFI, read my update on her in kids section

No, read some posts on the yahoo malabsorption sites, the australian one is very active and full of people who have FM who have very variable responses, some can have lots, otherwise tiny bits.

If you think you have HFI and are as reactive as you seem to report you are on every little thing then you really shouldn't do Bills test. Bill, have you signed a legal disclaimer with your suggestion, Fred may not be the only one having epileptic seizures otherwise. .........??!!!!

Your best test is to just eliminate fructose completely, and soya as alot struggle with soya (in both conditions), and lets face it if you have been vegan you will have had alot of that. Also, I'm surprised you haven't been more ill if you have had a vegan diet all these years and had HFI. Oh sorry, of course you have had every ailment going, just haven't had time to read all the posts.

[ukbill]

This thread has got seriously off topic!

It was supposed to be a thank you to Fred for the Stirling work he has done on the site for many years.

Particularly in tiding up threads that went off topic

FRED COME BACK PLEASE!!! WE NEED YOU!

Yes I know I'm the worst culprit.. "guilty look" walks off back to kitchen for cup of tea promising to self.. "will try harder next time"..

[Tammy]

HI Bill.
We don't agree a lot of time, but I just wanted to say you made me giggle today.

And yes, we need Fred back. This is getting out of hand again.

And thanks for getting that fradulent site down. Or at least trying to.

[esmee]

yes, charlie, i have been VERY ill for almost 20 years, and mildly ill before that. I gradually got worse AFTER I became a vegan at age 16. I was forced to drop out of college due to my incapacity to function, and I have been on SSDI (not much but it sure does help) for 7 years now (should have been on it for past 20 years but it is hard to get approval if you do not have a proper diagnosis).

I was homeless and lived in my car for 2 years at one point because I was too sick to work. I spent a week in the hospital when my weight dropped to 87 lbs and the on-staff phycisian decided that I had anorexia and referred me to a psychiatrist. My GI doctor who admitted me at my request and ran a gazillion tests and found nothing wrong basically sent me home, with nothing changed, to die.

it may well turn out that I do not have HFI, but removing fructose from my diet is making a HUGE difference in my blood sugar already. If it is not HFI, then it is a very close cousin of some kind that affects my ability to properly metabolism fructose. I am currently eating white rice, chia seeds, spinach, collards, and mushrooms. That is all. I have been able to go for 5 hours in between meals with steady energy and no LBS episodes. So, clearly, I am on the right path, and a proper diagnosis after all the years of suffering would be like winning a 10 million dollar jackpot!

I saw my doctor today about ordering Dr. Tolan's test, so everything is being set in motion. I will call Dr. Tolan's office tomorrow and find out when he plans to run his next batch of blood samples, so I can be sure to get in on it.

esmée ♥

[colormist]

Eh, I think Bill grows on you after a while--although I do think he could use a disclaimer in his signature.

I miss Fred, too. He always did a very good job at bringing everyone back down to earth when we started floating away with our heads in the clouds. Which reminds me, I wanted to do a bio of him on my blog.