Question are "Tolerated" foods HFI Safe?

[ukbill]

I am getting feedback from parents trying to feed babies and young children a safe HFI diet.

In some cases to try our HFI diet to see if their child responds (frequently out of sheer desperation)

However by what I read they are feeding them a lot of foods that are in the "lists" as "Tolerated" however they are not Fructose free...

No parent or Carer who is "Normal" not having HFI could be expected to know what is "safe" and what is not, out of the "tolerated" lists, or how much can be used before causing a reaction.

Let alone how it can be cooked to minimise the Fructose load.

This is understandable and fixable.

I propose we (with Diagnosed HFI sorry) produce a list with "sticky" links from every age group, to this list.

So people who are caring for a potential HFI or newly diagnosed HFI, have a safe list of totally HFI safe foods they can use.

This will allow the child or person to either show that they are OK on the HFI diet or to help by keeping the Fructose load as low as posible until the persons Liver can start to regenerate and heal itself.

Or if no response form the child to the Diet, then the Parent or Carer can quicker head off in another hopefully more fruitful direction with minimum wasted time and hope.

I am sure there are parents who have tried to avoid sugar in foods for their child and have got it disastrously wrong through no fault of their own, because they did not fully understand the condition or were given poor to bad advice.

Anyone agree?

I know some people have multiple intolerances so the list should also be of great help to them.

By keeping the "SAFE LIST" 100% fructose free or as close as we can make it, I think it will help a lot of the "Double Zero" HFI'ers.

I think, or suspect at least, a lot of "Double Zero" HFI babies die in childhood.

So anything we can do to help them grow up and lead happy fulfilled lives is worth a lot of effort!

[ukbill]

I will start the ball rolling and at the end of a few weeks will compile a comprehensive list.

We can then start with recipes which ONLY include Safe ingredients.

It might be an idea to have a second list after we have nailed this one down, of foods that are very nearly safe i.e whole wheat breakfast cereal?

!00% HFI safe foods

Milk from Cows Sheep, Buffalo & Goats (possibly a lot more animals as well these are the ones I have tried and had no problems with )

Cheese made from above milks.
Yoghurt made from above milks, (plain unflavoured)

Plain fresh Fish (all varieties)
Prawns and most shell fish (scallops taste sweet not sure if they are or not)

Meat.. ie Chicken, Beef, Pork, Lamb (fresh un "brined" or messed about with)

White Rice
Plain Pasta
Wheat flour (white milled no added Fibre or additives)
Potato Starch (NOT potato itself because they all contain Fructose to greater or lesser amount)
Maize flour
Rice Flour
Mushrooms (white button or open varieties)

[esmee]

I think this is a great idea ukbill.

As a side note: I thought it was interesting in the interview that colormist did with fred, that he could not tolerate regular milk as a baby, but could tolerate condensed Carnation milk. That is totally bizarre, as you would think it would have been the opposite. But after he had Rubella, he could then drink regular milk with no problem. Again, very interesting.

I wonder if other enzyme systems in the liver are affected in some HFI-ers? You know with dogs the gene that carries the color white is somehow attached to the gene that has to do with hearing, so many white dogs are deaf. I wonder if something similar could be going on with HFI-ers? For instance, Is it possible that the enzyme system needed to process alcohol is affected because it is somehow attached to the same gene?

[ukbill]

I don't want to go off topic but We used to milk Goats and sell the milk to parents of children with eczema skin disease.

The parents and sufferers came to us directly from Doctors (medical practitioners) who had heard the results we were getting.

After 6 months on a totally cow free diet (no cows milk, beef meat or beef fat) the children had completely recovered and in most cases could then eat butter and drink milk like any other child..

We sold the total output form 13 milking Goats (this was before it was available in Supermarkets) to people with this problem.

The only failures we had were those who could not keep their children off dairy and beef fat for the 6 months.. ]

Chocolate in the UK has milk and animal fat added usually beef fat and was the usual culprit.

So these types of allergy's are complex and not always permanent..

Every time we have tried this "cure" with an adult it has failed for the same reason.. cakes, cookies, chocolate etc all contain butter or fats usually from animal source.

Although they do get a lot of relief by drinking Goats milk and eating Goats cheese instead of cows milk cheese.

[Sm]

Jan 22, 2012 22:04:59 GMT -5 esmee said:

I think this is a great idea ukbill.

As a side note: I thought it was interesting in the interview that colormist did with fred, that he could not tolerate regular milk as a baby, but could tolerate condensed Carnation milk. That is totally bizarre, as you would think it would have been the opposite. But after he had Rubella, he could then drink regular milk with no problem. Again, very interesting.

I wonder if other enzyme systems in the liver are affected in some HFI-ers? You know with dogs the gene that carries the color white is somehow attached to the gene that has to do with hearing, so many white dogs are deaf. I wonder if something similar could be going on with HFI-ers? For instance, Is it possible that the enzyme system needed to process alcohol is affected because it is somehow attached to the same gene?

[Sm]

I remember a doctor telling me that people normally have multiple enzyme deficiencies

[ukbill]

If you are taking about genetic defects as a result of Chromosome damage (as in Downs Syndrome) your Doctor is dead right.

HFI is not dependant on the ages of parents and is as common in a first born child as in any subsequent children.

Its not caused by environmental chromosome damage (exposure to chemicals and radiation)

There are a lot of unknown issues with HFI and its only through places like this where HFI people can discuss our condition, that other posible side issues can be discovered.

These side issues could well be caused by different as yet undiscovered genetic markers, that might be blocking the genes that should allow the body to make the aldolase B enzyme.

This is likely to be the cause of the 20% who "fail" the Genetic test.

There is much yet to find out

So your Doctor could well be right