Multi Vitamins

[kcchater]

Hi Everyone,

I have a 5 year old son with HFI. We live in Kelowna BC Canada. I am on the hunt for a multivitamin that does not contain any sugar. We are having some issues in meeting his daily requirements for vitamins. If anyone could help me that would be great. I don't mind even ordering it from the states or picking it up as we will be there in April. Suggestions please

[ukbill]

He will not need them!

I cannot take them because my ultra low Fructose, HFI diet is too high in vitamins and minerals already.. the only thing he will be short of is Vitamin C.

Its Vegetarians and Fruitarians not to mention Vegans who need the multi-vitamins! not us!

DO not worry the HFI diet is wonderful and VERY healthy! the only reason people are being brain washed into 5 a day Vegetables and fruit is because it will replace 5 servings of sweet foods normally.

The reason people who eat sugar need at least 5 a day is because they need the plant Fiber to slow down the breakdown of refined sugars into blood sugar. particularly Fructose which if not dampened down by Fiber is turned into the worst type of Cholesterol and body fat!

Watch the video by Dr Lustig on You Tube he explains why Fructose is so very poisonous to all people (bar extreme athletes)

It is a common misconception that because we do not eat fruit and vegetables we have an unhealthy diet.. it is fact far healthier than the normal (Western) diet which is far too high in Hydrogenated fats, refined sugars, preservatives and other chemicals, food colourings, processed foods and far too much salt!

[Tammy]

Yes a multivitamin is a good idea. Maybe Bill doesn't need them, but your son isn't Bill. Bill is also an adult - not a growing child.

I was never able to find any "kids" vitamins but I was fortunate that my daughter could swallow pills without any trouble. This was quite a few years ago though. I think I remember someone finding some now. I'll have to do some looking.

If you can't find any kids, you can check with his doctor and ask about crushing some adult ones up.

[charlie]

Hi Kchater, yes, you will need to invest in some multivitamin and mineral supplement. Yes, the problem is finding a safe one. There is a company in england that may ship some out www.gandgvitamins.com They are powder in a capsule and you can break the capsule open and sprinkle on a spoon of say yoghurt or safe pudding.

There is a very long chain effect of the limited diet of HFI meaning that alot of mineral deficiency is caused by lack of others and the chain effect of missing vit C. I had a long chat on the telephone with a doctor who has specialised in nutrition who talking very sensibly about this, but unfortunately lost me half way through the conversation, when work picks up my first stop is his practice but I am looking at the wrong side of £300 for initial consultation and blood tests. But the long and short was due to no veg she may be short in things like magnesium, potassium etc which may be affecting her sleep and concentration etc.

Lucky who posts on here may be your best help as she is in Canada and has a 10 year old son so she may well have access to safe ones.

[ukbill]

Just watch your child very closely if you are going to give him any multi vitamins because we really, honestly DO NOT need them.. only vitamin C.

The first sign of problems might be his going yellow from too much vitamin A or getting painful joints! But this will be after many months of taking the multi-vitamins so you may not associate the cause and effect.

If in doubt get him tested FIRST!

I am not a betting man buy I will give you 10 : 1 that his test results will come back fine, assuming he is getting enough vitamin C and has done for a couple of months before the tests.

Also too many vitamins and minerals will also stress his liver as that is the organ that controls these things.. if he is only newly diagnosed HFI his liver might not be in a very good condition already.

I was for many years very worried about this and took all sorts of vitamins and supplements.. none really agreed with me, most caused me a lot of varied side effects.. magnesium and iron for example cause me horrible side effects!

Additional multi-vitamins cause me excruciatingly painful joints, after a couple of months taking them.

So now all I take is a slow release vitamin C and Zinc, and have never felt better or been healthier in my 56 years.

I take a slow release type because vitamin C is not stored in the body so any over dose (ie more than the body needs at that precise time) is broken down and / or excreted.

I have spoken to maybe 30+ specialists in nutrition over many many years and none of them could recommend a single thing I needed.. except vitamin C and more than 50% of them were wanting to sell me vitamin supplements!

I was convinced because of everything I had been told about how Good Vegetables and Fruits were and how BAD meat was.

So I came to the conclusion that I MUST be really low in vitamins and Minerals.. For Years I was on the hunt for a supplement that matched my diet.. and NO ONE said I was short of anything but vitamin C!

The ONLY people who actually NEED to take additional vitamins and minerals are Vegetarians and Vegans!

NOT carnivores like those of us with HFI

If your lad is drinking milk, eating cheese, eggs and eating lots of meat (of different types I.E. Red meat , Chicken, Lamb, Pork and Fish) then he will be fine!

Do not forget many vitamins are only oil soluble so eating a balanced amount of fats and oils is actually GOOD for us, as HFI we tend to eat more animal fats than the general population and this is actually GOOD for us!

Do not Panic or worry, your lad will be fine with nothing more than a tiny amount of vitamin C added to his food.

At best additional vitamins and minerals supplements for children with HFI are a placebo for parents.

10 : 1 says I'm right

P.S I did not get or need them as a child either and I was not getting any additional vitamin C in my diet at that time, except for the very occasional Lemon I would eat if I could get one.

PPS I work a 62+ hours over 7 days a week split 40 hours 9-5pm 22 hours 7pm to 6am, and have done so for the last 5 years, so if any dietary deficiency was present I am sure it would have shown up by now!.

[ukbill]

Sorry I forgot to say HAPPY BIRTHDAY.

Have a good one and relax...

And Stop worrying so much, you wont be helping him my making a BIG deal out of his HFI, its by no means problem, if you do not allow it to be or make it one.

Enjoy

[charlie]

I'll encourage Lucky to chip in here as well, as her son (although not diagnosed HFI) had a breakthrough when his electrolyte balance etc was improved. Yes, supplements need to be done carefully as too much of one sort may do harm but a balanced multivitamin and mineral substance is helpful. As I said earlier, it is the chain affect that one has to consider, especially in a childs developing body and neurological development. I will look into it a bit more later but here is a link to a basic source of a few essential vitamin sources and yes, there is a source of some in safe HFI foods that you would have to maybe add a bit more to your childs diet but other sources are the good old veg, fruit nuts and soya.

www.netdoctor.co.uk/focus/nutrition/facts/vitamins_minerals/vitamin.htm

Oh, and do feel free to make as big a deal as you want to us on the board. As a parent of a child with this condition it is very daunting and very confusing and the most daunting thing that goes through your head is "they may get liver or kidney failure". No matter how much logic tells you that if you control their diet sufficiently that will not happen the possibility is still there lurking in the cobwebs of your brain. And at first the diet goes against everything drummed into us about a healthy diet so you have to get over that hurdle. Plus there is that aspect that the modern diet is so full of lovely sweet delicious treats that they will never be able to have so yes you do go through that sorrow phase. But, at the end of the day it is manageable and you can add alot of variety but it takes time, perseverance and blood sweat and tears to get there.

In some ways Bill never had to go through that childhood deprivation feeling as he didn't know what he had until he was an adult, all he knew is he didn't like certain foods so what you don't like, you don't miss, it was his choice. These kids that are diagnosed early go through the being aware of being deprived of what others can have and go through that independant stage of fighting against the rules and they know better. So you as a parent have all that to cope with.

There is light at the end of the tunnel and you sound like you have a pretty good grip on this and asking very sensible questions so you just carry on as you are and good luck to you.

[susan]

I grew up with serious malnutrition. One doctor suggested an iron pill. Unfortunately, without C, and other important nutrients, ...the iron did not absorb.

As a female about 26, I was so... anemic and weak, I went for a check up. A female nurse practitioner cared enough to really check. I was dreadfully low on Iron. Her supervising doctor called me "walking dead" because I had so little Iron in my system. I was finally given a Iron pill which had C, B12, Iron and Intrinsic Fact....which made it absorb. Life is better.

Everyone has a unique biology. To say "ABSOLUTELY NO" OR "ABSOLUTELY YES" is miss leading. Listen to your body. Females need more iron and need what it takes to absorb the iron. Most medical models do not recognize nutrition as a vital element

Peace be with us all.

[ukbill]

Charlie said "In some ways Bill never had to go through that childhood deprivation feeling as he didn't know what he had until he was an adult, all he knew is he didn't like certain foods so what you don't like, you don't miss, it was his choice. "

Oh yes I did.

I only did not have a name for the condition, that is all the "diagnosis" did for me .. except for nearly killing me and giving me 6+ months of living hell after the tests.

As a child I only ever had enough to eat on one day a year and that was Xmas day.

On Xmas day I could find enough meat so that I could eat enough to actually feel full and not too ill.

Not to mention not getting told off for eating too much meat, because we could not afford much and meat was expensive.

I did however have to eat some vegetables on Xmas day (which made me feel ill) but in the confusion of the meal I could sometimes hide them or slip them onto someones plate while they were not looking.

The rest of the year I was both hungry and ill almost constantly.

This of course is now not necessary, partly because food is now much cheaper than it was and because we have wonderful useful sites like this and Google to find out information.

Yes I went to sweet shops with my friends, Ice cream vans too. And no I could not eat anything and yes I did wished I could.. Oh how I wished!

What made it not too hard bear was I KNEW I could not eat those things because sweet = ill sick ukky

Therefore the decision was absolutely clear cut and easy.

There were no sweets I could eat that did not make me feel ill, so I did not try too often, but yes I tried every single one!
Every single fruit, vegetable, sweet ice cream, chocolate.. yes I tried them all.

But because sweet = ill every time, I barely tasted them, one lick was enough to reject the unsafe food.

I am so glad they all made me feel ill, there were none that I could have eaten..

If there were, just how confusing would that have been?? Not to mention dangerous.

Imagine what it would have been like, is like, for HFI children who like sweet tastes?

"Oh I can eat this one so I should be able to eat that one.. oh dear I'm ill why?

If I eat this one first then I can eat a bit of that one before I start to feel ill...

If I eat this will I feel ill after wards? Why can I eat that one today and not feel ill and yet tomorrow I will be ill?

Why am I so ill all the time?? Etc etc etc"

Today parents think they are helping their HFI children by giving them artificial sweeteners, Dextrose and worse still Glucose.

So the child grows into and adult who has no idea if anything they are eating will be safe or how ill they going to feel after a meal, the next day , the next week!

They also will feel even more deprived and actually will be deprived ALL of their lives because they have had the ability to stay safe removed from them!

Also they will feel VERY deprived, depressed, hard done to etc, because they like sweet foods and feel it to be unfair that some of these nice sweet foods make them ill.

Feeding sweet flavoured foods is at best a short term gain to make the parent feel they are giving their HFI child the "best" childhood they can have.. like cakes at birthdays.. (made with glucose or dextrose).

I understand this.

Yes I really do. I too have been the parent of a sick child.. I understand.

However this changes nothing!

For the parent, feeding sweet foods to an HFI child is a placebo, in that it makes the parent feel better, and they think they are making their child happier.

However for the HFI person who will grow from that child it is a life long loss of safety, self confidence and quite possibly good health that may not / cannot be regained which is the cost they have to bear.

So I am glad, no Very Glad that "choice" as it were, was not taken away from me.

I now have a real choice, I have been given a bar of glucose based Chocolate and a block of 100% pure Fructose free Chocolate for Xmas.

I have absolutely no desire to open the chocolate bar and the 100% chocolate block, I scraped less than 1g off it when I first got it home.. and its sitting there now untouched.

Yes I have the choice but really it has no attraction to me at all.

Do I feel deprived??

Absolutely NOT.

This is why I say just DON'T do it Please!

[Tammy]

Bill - Just knock it off. I'm sorry you had such a terrible childhood. I'm not repeating it for kids today. Parents are helping their kids whether you like / believe it or not.

And I'm happy for you that you don't need vitamins and minerals. But that is not always the case. Just because it is one way for the almighty Bill does NOT make it a proven fact for all HFI.

This board was designed to help people and parents trying to get a handle on this. It's supposed to be friendly and helpful. If someone needs vitamins, they want an answer to their question "where can I get?" and they don't want / need a lecture by you screaming at them "He will not need them!" How do you know? Have you tested his blood? Have you been treating him? You don't need them - Good for you. Regina doesn't need them anymore - good for her. BUT THIS CHILD DOES.

I realize some of the older adults with a handle already on this like discussing some things with you and enjoy some of your opinions. But you are scaring away the people who really need this forum. The new parents just looking for a way to deal with this day to day. It's already confusing for them and you browbeating them to ignore their doctors and do things your way only makes it worse.

Parents are afraid to even post anymore because they don't want to set you off on a tirade and they are too unsure of themselves to say anything against you. How is this helping them??

Regina is doing wonderful. She is healthy and happy. And the one thing I am most grateful about is that I did NOT have you anywhere around. You would have just done more harm than good.

This is NOT the BILL SHOW. You do NOT know more than the doctors.

Parents - listen to your doctors, ignore Bill. THEY know best, not him.

[shereebailey83]

Hi Guys, after struggling with HFI all my life and after another visit to the hospital i was also diagnosed with IBS. I have been seeing a natropath and he has been working magic. I used to take a simple multi vitamin daily and after tests came back i was put on, iron x 2 daily, b12 mouth spray, a probiotic to help heal the gut, fish oil, and himalayan salt daily. My energy levels have changed dramatically and as long as i eat HFI safe i'm not longer getting extreme stomach aches and bloating... my body was missing these vitamins for 29 years and i'm so glad to finally have some results, definetly recommend a good naturopath, everything he gives me is in pure form, HFI safe, no preservatives, no artificals and no over the counter stuff, nobody deserves to feel as sick as i felt everyday... listen to your body, if your diet is good but your still sick maybe seeking a naturopath's advise is an option

[charlie]

Absolutely, if your body has been struggling with something like HFI or FM for a long time the chances are the whole system is not absorbing nutrients from the food long term and therefore highly likely to be generally deficient. I know with FM they have found tryptophan absorption to be affected and the knock on affect of that deficiency is seratonin and melatonin levels are low therefore mood swings and poor sleep develop. Therefore as long as you take professional advice you may find you need to take supplements. The problem here is the blood tests aren't necessarily specific enough to be accurate so a more specialist test may be needed.

[susan]

I just reviewed the results of my annual check up.

As usual, my BUN is high. I presume it is from the high protein diet I eat. My Cholesterol is still high.

What amazes me......even though I do take vitamins, and I am no longer a menstruating female,

my Hemoglobin barely reaches the normal zone. I am reminded.....how tired I feel .....and how much better could I feel if my iron levels were higher.

I will be more precise and make sure I get my vitamins.

[ukbill]

Tammy, who has ever found a normal Doctor who know anything about HFI?

HAVE YOU?

Which is my point completely !

I did not have "terrible childhood" it was the one I had and that is all.

You make from life what you can, or not, its your choice, I chose and always will choose to make the best of my life..

All I am trying to help other to do the same not cripple their children's life prospects with stupid ideas about "having" to feed sweet foods particularly because its "cultural".

Unfortunately Regina is not going to be able to go out into the real world where she has no support or help.. other HFI children are not (hopefully) in the same situation and its them I am trying to help.

I am trying to help parents give their HFI children the best start and future life long prospects.

People seem to think I am saying that if you have HFI you will Never need additional vitamins? This is not so.

IF your body needs them (and some people do) then that is fine I am just pointing out to parents that contrary to what other people are telling them the HFI diet is really good and healthy!

Providing the child is getting a good mix of meats from different animals (along with cheese and milk) they are unlikely to need any vitamins other than vitamin C

Feeding a milti vitamin to all HFI children automatically is just not needed, the diet is not missing anything other than Vitamin C and Folic acid for women looking to start a family.

Everyone says how deficient our diet has to be but then cannot point out what we are missing. No one has yet been able to point out one vitamin or mineral we are short of, other than the admitted Vitamin C (and Folic acid as I have said).

IF your Doctor has done tests and says your child is low in a particular mineral and vitamin then that is fine, then take it as a supplement or increase the amount of the specific food group that provides this mineral or vitamin.

All people are different there is no "standard" human being.

As with Susan she needs more Iron than she is getting .. this might well be the same for her even if she was not HFI.

I know plenty of women who need extra iron supplements and some of them are vegetarian!

Now what is "brow beating" about that???

My postings are universally positive and are telling parents NOT to panic, their HFI children will be fine and healthy.

I only say that to give them the very best start in life, avoid all sweet flavoured foods ..

I can prove with loads of evidence that this is both the truth and is factual!

People who eat sweetened foods cannot detect the same low levels of sweetness as people who do not eat sweet flavoured foods..

Now what do HFI people have to avoid all their lives.. OH yes sweet flavoured foods.. so it is an absolute NO BRAIN'R just don't give them to HFI children.

And not only to HFI children!

Although I will agree that if your child is not HFI then fruit and veg are a good idea as part of a balanced diet .. but not sweets and sweetened drinks.

These are not healthy for anyone.. even sweetened fruit juices are not healthy in excess.

"Cultural" or not they are really bad for everyone.

This is not only my opinion but slowly becoming a universally accepted truth!

Now Doctors, dietitians, nutritionists and even Governments are slowly realiseing how dangerous sweetened foods are.

The UK government are trying to ban all sweetened drinks, particularly those aimed at children.

This is specifically to try to reduce the childhood obesity and diabetes epidemic which is directly linked to the consumption of sweets and sweetened drinks.

[lucky]

I have found a doctor who knows about HFI.

In fact, we've come across a few. AND a metabolic dietician. And when we later encountered those that knew less, they researched pretty quickly and caught up.

Please don't speak in absolutes.
You are simply not going to be universally accurate...

My part of the world is teaching it's new doctors (especially pediatricians) of HFI and other fructose related issues. And they have been for some time. And higher specialists are well versed already. But I was reluctant to say so till now, as this may just be in our metropolitan area.

General enouraging advice is helpful. Medical absolutes should only be offered by medical professionals. PERIOD.

AND really?...we're all adults here, and as such should conduct ourselves with a level of decorum. There is NO room on a -FREE, public, non medically supervised board- for territorial and aggresive behavior. Or talking in absolutes. One person simply does not have all the answers or specific info worldwide.

Take the anger off line. There are very scared mommies out there that don't deserve this.

[lucky]

Kcchater,

I am Lucky. I also live in Canada.
I have the vitamin info for you. I'll be in touch... soon.

[charlie]

Well said Lucky.

[ukbill]

Luck by name and lucky by nature

Well that's one HFI with good support anyway.

Points taken by the way

If I have frightened anybody then I apologise.

That is not my intention, far from it.

PS if anyone else feels like helping with research etc. (We still need to find out how Dextrose is manufactured etc..) I would appreciate it.

[Tammy]

Thank You Lucky, well said.

Bill, I also had a dr for Regina who saved her life by realizing it was HFI. There was no internet back then, I relied completely on her doctors and dieticians. Fred's Dr knows a lot. There is at least 1 in Florida who DX a little boy down there. Chuck and Kelly's little Lilly was given a DX by a doctor, which is why Chuck created this board. Ben was a small boy in New Jersey. There was a young girl in the Harrisburg, PA area. Sarah is in California. Mary is in AZ. Over the years there has been several people who have come and gone, all with a confirmed HFI DX.

I agree that not all doctors look for it, but why would they look for something rare first? It takes a while to get to the right conclusion, but they are the ones that have to get there.

If Doctors don't know anything about HFI why are there more and more people being told they have it? More and more new parents show up here all the time, which is a good thing. But they still need to work WITH their doctors, not against them.

You said :
People seem to think I am saying that if you have HFI you will Never need additional vitamins? This is not so.

Then why was your very first sentence on this thread:
He will not need them!

And then you went on to completely tell her why he won't need them because you don't. You never even considered the possibility that he may.

[ukbill]

For goodness sake drop it Tammy.

But been as you brought it up again. You give me an opportunity to explain my reasoning yet again,

Thank you

Yes he is very unlikely to need them.

This is because Very very few people actually need them at all, particularly as children.

Public attitude is that everyone needs them, this is a construct ( or brain washing it you want a 1960's terminology) created by the massive advertising budgets of the vitamin sellers.

We are all made to feel that if we are not feeding Multivitamins to our children we are doing them harm or being less of a parent by not doing so.

I could give you a 5,000 or even 10,000 word analysis of the effect of mass advertising on the public mind, if you want (and I had the time) or you could go an read a few of the 100's of books already written on the subject.

All this feeding children multivitamin stuff is bunkum and companies who sell vitamins not only know it, they make a huge fat profit, firstly creating false concerns, then feeding on our natural worries as parents.

The average Diet these days is far richer in Vitamins and minerals than the human race has ever know in the millions of years it has taken us to get from the trees to the moon, and the HFI diet is even richer vitamins and minerals than anyone else's.

There is also a risk if a child has weak kidneys are a result of being undiagnosed (and so eating to much sugar) then the excess of the multivitamins which are excreted through the kidneys could easily cause more damage.

Please go and talk to a few genuine Nutritionists, not those who work in health food shops and are trying to sell you stuff, like I have, then you may start to realise the world is not as you think it is.

OK so my first line was "He will not need them" and that is still true in the vast majority of cases and most likely in his.

If he was an adult then the statement would have been different.

Then it would have been "He most likely will not need them"

I did consider the possibility, of course, but people keep saying my posts are too long.. that is because I frequently try to explain everything in a "cat sat on the mat" level, to avoid being bitten by people who just do not "get it" and take every opportunity to have a go at me.

So perhaps my explanation was missing a few explanatory sentences, sorry.

There are a few Medical practitioners who now are getting to grips with HFI and related conditions, I applaud them all!

Lets have a lot more of them. Please!

I am always open to discuss the difference between theoretical HFI and the actual beast itself with anyone . The more the world learns about HFI the happier I am!

However I can get you the address of one Doctor who claims there is no such thing as HFI, in his country, and to prove the fact he wants the mother of a plainly HFI child to feed him 25g of pure Fructose a day for a couple of months to see if his liver is fails or not!

So the general situation is still not good, but is improving.

By the way I was also diagnosed before the internet arrived.

What is the first thing almost all parents say when they join the site??

Oh yes

"My Doctors knows nothing about HFI"

These days its parents who are using the internet and telling the Doctors it might be HFI, more often than not. Then the Doctor go's looking for the information.

And yes I do have Doctors in my extended family, (my step father was a Doctor) and they all say that this is the case, particularly with rarer conditions like HFI, these days..

So I wish you all Peace, good will and good health. Except for that Doctor in Holland!

And Tammy thanks for the opportunity to explain myself, better. xo

I stand by every word of my first post on this subject (amended by the notes above)