Amounts of fructose/sucrose/.sorbitol and safe food lists

[rachael]

My son's doctor thinks he may be getting fructose in his diet. This might be because the school he was at wasn't stopping him from taking unsafe snacks and was not telling us (but that's another story) or because something we think is safe actually isn't.

When looking at sites like this that break down different kinds of sugar, should we only be allowing him to have things with 0 for fructose, sucrose, and sorbitol, or is there a number that is generally safe to stay under?
www.csidcares.org

Does anyone have a good, comprehensive list of safe foods, ideally with brands? Looks like our lives are about to get a lot more limited.

But in happier news, the metabolic doc was optimistic that the CRISPR system will be applied to HFI and that there may be a cure before my 3-year-old is an adult. That's something exciting to think about!

[colormist]

First, any amount of fructose/sucrose is going to do damage to his liver.

Second, Fred was instructed (as an adult male) to keep his daily fructose/sucrose load under 100mg. That is 0.1 grams for an adult male.

Third, considering that medications are reduced in dosage for wee little ones (due to differences in body mass), I would think you would also keep that in mind that a smaller liver would have a smaller fructose load.

Math time! 0.1 grams/~200 lb male* = .015 grams/30 lb child

Note: I have no idea if my math is accurate, but that is about 15mg of fructose for a 30 pound child. You'll probably get way more than that with cross-contamination in manufacturing facilities, sadly.

*total rough guesstimation of Fred's weight here. He's either going to be flattered, surprised, or very angry with me!

The safest food you're going to find is homemade everything and getting friendly with your local butcher.


IN OTHER NEWS! I didn't know the CRISPR gene editor was anywhere near being ready for use! That would be an optimal treatment.

I also have a running countdown for the supplemental that HFIers will be able to take. It was initially designed for diabetics, so they could eat food without having to worry about the sugar content. I think we're under 2 years until the trials begin. It basically turns HFI into a lesser medical condition called Essential Fructosuria. In Essential Fructosuria, the liver does not even attempt to process the fructose and just flushes it right out of the system via the urinary tract. Aside from sweet-smelling urine, there are no symptoms.

Hopefully we'll be able to afford at least one of these treatments!

[jenn123]

sorry to hear you little one is still getting too much fructose. We all try so hard to get the amount down and it is just really a tough thing. As colormist said the cross contamination in manufacturing may be getting him to his limit. It is such a tiny amount.
Whenever my daughter is struggling, I do just the most basic things for a week or two. Plain chicken, pork, beef or fish. No salt or pepper even. I only cook basmati rice (read it has lowest glycemic index) and I thoroughly rinse it before cooking or russet potatoes soak, sliced and baked with a little olive oil. Lots and lots of water, milk or a little pure green tea ( no lemon or flowers mixed already in the bag). It's boring, but usually helps her out.
I have also always done baths with a little Epsom salt and hydrogen peroxide to help keep things moving. Seems to help my child.
So I guess in sum- keep it simple, keep it home made and lots of water. It is a narrow path on which we all walk. You are doing a great job !

[jenn123]

Also, in regards to the school.....I printed out information about HFI to give to teachers and others that care for her. If you print out a web page with information on the condition, be sure to find one that sounds the most serious. I think the one I found states that it may result in death.....I don't think anyone has offered her a cookie since 😊

[rachael]

This is helpful, even if it's not what I want to hear. He doesn't seem to be struggling, it just showed up in his labs, which makes it harder for us to tell when he's getting things he shouldn't have.

Does this mean that you would cut out Pirate Booty (he's going to be so mad...) and Hebrew National Hot Dogs?

I saw in another thread that we should cut out the Cascadian Farms Purely Os, are there any safe cereals?

[jenn123]

We do not do pirate booty or Hebrew hot dogs. We have sausages made special at a sprouts or whole food. Just chicken, feta and salt.

[antonia]

I would concur the best way to eliminate hidden fructose is to cut out the processed foods-chips, crackers, breads, processed meats. I've found that once we clean up the diet my daughter gets better at detecting unsafe sugars. If I introduce those foods back into her diet at a later date she'll often reject them.

[antonia]

I would also check grains, cereals and flours for fortification. My daughter doesn't do well with them and will actually reject them now that her diet has been cleaned up and she's old enough to express her dislike for them.

[ukbill]

ALL Glucose / Dextrose / caramel are likely to be contaminated with Fructose.
"natural flavourings" is usually a cover for Fructose but in a mix so it is below the level required for reporting on the label.. however still too high for us.

Check the amount of "digestible" fibre in the foods. this is broken down in the gut by bacteria or enzymes (I cannot remember which) into Sucrose..

Whole wheat is not really good for us as a result I take a none digestible Fiber supplement (2 x teaspoons a day)

This keeps my gut functioning properly.. but its something I cannot mess with otherwise suffer days of problems if I miss.

[colormist]

Hebrew National dogs are technically safe upon a label read, but I can't seem to eat them very often without getting sick. I've never had that problem with pirate booty, though.

You might be able to find a local butcher that can talk about hotdogs in more detail so you could find an option that would work.

[ukbill]

For the sake of digestion I would not advise looking too closely as to the ingredients of Hotdogs or anything made for mechanically recovered meat.

[colormist]

LOL@Bill

[rysmom14]

My son used to eat a lot of the Hebrew hotdogs, but we have since taken them out of his diet.

[adamsmom]

If your child is eating eggs and having reactions, try taking them out of the diet. They do have fructose in them. I know many with hfi eat eggs with no problems, I have also heard of reactions after ingestion. I have also learned to never trust dieticians and to-do my own research. After Adams diagnosis, I found the USDA nutrition database to be helpful in looking up fructose amounts in basic foods ndb.nal.usda.gov/ndb/nutrients/index.

[rachael]

Good point about the eggs. Would y'all also remove things that have eggs as an ingredient or just straight eggs? Do we know if the fructose is primarily in the white or yolk?

He used to love eggs but has been refusing them more recently and I wonder if that is because we are getting better at the diet.

[adamsmom]

I have completely taken them out of Adams diet. I have tried to look up the details about the exact sugar content and have gotten different results. I think it depends on how they are cooked. Do any adults with hfi have any input on this subject?

[ukbill]

With eggs it depends on the diet of the chickens.

Many eat food waste from factories mixed with all sorts of crxp (literally in the USA its common for the birds droppings to be sterilized and fed back to them!) so the food they eat can contain cake and biscuit waste if a factory is close to chicken farm..

Organic and free range chickens and eggs are always nicer and safer (assuming they are genuine) they cost a lot more unfortunately, but when not stuck in a small cage with nothing to do but peck your neighbouring hen all the spare energy go's into egg production. free range and organic (which are free range as well) produce far fewer eggs per year so cost more to produce.

[antonia]

Not sure what they feed the chickens to produce the omega3 eggs (also organic and responsibly raised), but my daughter does well with them. Just the fact that you can buy them tells you what chickens eat changes egg composition.

[ukbill]

Usually straight vitamins are added in an "add-mixture" because the amounts are only in micrograms. Not too the eggs but to the hen layers feed.

[Katie535]

Oct 17, 2017 21:35:50 GMT -5 adamsmom said:

I have completely taken them out of Adams diet. I have tried to look up the details about the exact sugar content and have gotten different results. I think it depends on how they are cooked. Do any adults with hfi have any input on this subject?

I am a 40 yo woman with HFI (confirmed diagnosis 2 yrs ago so still fairly new to learning all of our safe foods). I have noticed that I usually react to eggs, though it depends on how they are prepared. If they are poached well done, and they are the organic/free range ones and I make them at home (I end up cooking them quite a bit longer), then I don’t have the reaction. Until I read this thread, I thought that my egg intolerance was an issue outside of HFI. Hmmm... interesting.