my introduction. my whole famiy has fructose intol

[lionessmom]

me (34) my son (15) my daughter (4) and my youngest daughter (1) are all fructose intolerant. all of us (except the baby) tested positive on a hydrogen breath test. and all tested way high. the doc told me to assume the baby was as well since she was starting to get the under eye circles as well and had teeth demineralization (has happened to me and my mom and grandma as well). i am going to request HFI testing at our geneticist appt. but the gi told me it wasnt likely bc we didnt have liver failure as a child. i tried to explain to her that severe cases get that and that we could have mild cases.

however, my son and i have hypoglycemia, and i have fibromyalgia. we all disliked sweets as children. i have felt this way since i was a kid. my mom and my dad both developed type 2 diabetes. my mom developed thyroid issues and my dad had heart disease and heart attacks before the age of 30. my dad's parents were both type 2 diabetics and my grandpa died of stroke complications. i am convinced we have some kind of hereditary issue. we have alot of markers for it but since we didnt have catastrophic organ failure it isnt hereditary? whatever. i made the doc mad bc i was requesting tests instead of trusting her years in school. all she wanted to do was give out anti acid meds.... she didnt want to give out the breath test. i had to insist.

there are some things i havent been able to figure out. like my sons chest pain. he gets it 2 days after drinking pop with HFCS or if he chews gum regularly. they cant figure out what is causing the pain.

we have decided to do the strictest HFI diet for 4 to 6 weeks. the only sweeteners i am going to use are granulated dextrose and the stevia with maltodextrin. they are the only ones i can find that are listed as tolerated. i have cut out all wheat except highly processed enriched white flour that i use to make bread or noodles. meat of course. i am having a hrad time figuring out which veggie i can include. everywhere i look has a different list. i see spinach is suposed to ba always safe though.

my (almost) 4 yr old has a birthday in 3 weeks. i know i can make a home made cake with the allowed sweeteners. but i am not sure what to do about a frosting. maybe yogurt with the sweetener and some thickening agent. i highly doubt i find ice cream. sigh.

this was a book. guess i needed to vent and share a little. i am sure everybody here will understand. it took me years of research to figure this out so far. and i still have a ways to go to get all the answers. i am sure i will have to fight with the geneticist as well to get the test. i am struggling with the diet changes. nobody likes what i am cooking. i spend hours reading labels and planning and researching. just to hear how they dont like it. or how mad they are that they cant have this or that. at least the 15 yr old has said how he appreciates that he can almost feel like a normal human being. he says the pain is lifting, his energy is returning, and he doesnt feel so much brain fog anymore. he knows how to make my day.

now to find vitamins that are safe....

[charlie]

Hi lionessmum,

nice to meet you, welcome to the board I hope you find it usefull.

the biggest tip I can give you is throw out all the food guidelines you have had over your life about healthy eating and variety because it doesn't work for HFI. One positive is that if you all have it at least you only have to cater for one diet and no one is left out.

Certainly follow a very strict diet for the next couple of months, and I second what Fred has said about avoiding sweet things or replicas of to avoid things slipping through, the stricter you are the better you will feel and the faster the body will recover. You will find sticking to what suits you may be boring but leads to a happier, healthier lifestyle.

My daughter has complained of chest pains too.

Re birthday cake, I have made one for Megs using glucose and then used whipped cream for the topping and put a few toy horses for decorations (she is horse mad). But again, as Fred said you can always make one for the guests if you need to. If Meg goes to a party I always check first what sort of party food they are doing and then try to provide something along those lines for her.

Good luck, take time to read the archives and you will read alot of sense.

Charlie

[lionessmom]

thank you for all the replies.
we are avoiding all sweets right now but i know they will want to have the same stuff the other kids do. a cookie, some candy, a cake.
i really think we do have HFI rather than just DFI bc i have signs that my liver is not functioning quite the way it should. my fingernails etc. but the liver tests come back fine. my sons chest pain does scare me.
my husband and step daughter diid not get tested but they are being real troopers about me getting rid of all the food we cant have.
i appreciate the suggestion about the cake.
i am real glad to find this site. i feel less alone now.

[colormist]

Hi lionessmom,
If your family does have HFI (and not DFI) your kids will really not miss out on sweets. If anything they'll just want a substitute treat (I always loved it when people gave me a small bag of my favorite chips instead of cake). Their aversion to sweets will help them when they get older and they'll be able to independently choose items based on smell/taste to tell as to whether or not they should eat it. The less sweet an item tastes, the more yummy it should be. I love spinach and lima beans and could never understand why people didn't like it.

Good luck with the tests! Did your family already take the breath test or are you waiting? The reason I ask is to possibly save you some really rough days. If you do suspect that your family may have HFI, you should press for a genetic test (blood) to see if you carry the gene. The breath test is mostly for DFI and is quite harmful to people with HFI. If the genetic test comes back negative, then you'd be safer to try the breath test.

Lastly, welcome to the forum. We were all so very happy to find others like us in this world. The group has been a great help to many people struggling with their diet over the years.

[lionessmom]

if i set out some cheese and summer sausage they will bypass the cake. lol.
i think the cake will come out ok. i think i am going to use unflavored whole milk yogurt to make the frosting. i am going to make a blend of dextrose, stevia, and maltodextrin. that will make it less sweet, but sweet enough to make a frosting. i might get a seperate cake for the guests.
on one hand i hope we dont have HFI but on the other i hope we do bc at least i know how to hadle that. if it isnt HFI then it could be something else that is causing these issues for my grandma, my mom, me, my sister, my brother, and my children. i know it is hereditary and i am afriaid it could be something worse than HFI.

[ukbill]

Just to post my 2 cents worth.

All sugars are processed in factories which handle all types of sugar. Dextrose and Glucose for example are made in the same factories as HFCS (HIgh Fructose Corn Syrup)

The manufactures do not worry about contamination.. one variety of Glucose can be sold as 100% pure Glucose while containing up to 40% "other sugars" legally!

Glucose made from Maize corn will contain at least 4% sucrose because its there in the whole grain and not removed in the processing.

Like Fred I do not eat anything that is sweet. It is best if your children do not learn to like sweet tasting foods, because if they do not like the taste then they will always avoid it and so will be able to live a far healthier happier life as a result of not getting caught out so often particularly when eating out.

Eating pure Dextrose of Glucose will dissolve your teeth faster than anything.

One of the first people to be diagnosed with HFI originally discovered as a result of having NO dental cavities!

I have very soft teeth ( I cracked a molar opening a nut) but other than that filling I have perfect teeth at 55 years old.

There are plenty of options to making "sweets " which are not sweet in any form.

Whipped cream is better than icing too.

I make all sorts of puddings and none of them are sweet.

Semolina, Tapioca, Rice, Dumplings cooked in milk etc..

I even make trifles by layering unsweetened blancmange mixes one on top of another with home made custard and whipped cream.. they are delicious!

You will need to cook all foods form fresh ingredients and watch out for Brined chicken and turkey.. its lethal..

Almost all preprepared foods contain added sugar (pies, some sausages etc.) even if they do not state there is any on the label they can still get a reaction form me so I avoid them all now.

We are starting to get Brined meats now in the UK.. its really just a way for the shops to sell us up to 30% added water injected into the meat.. the sugar is there to stop the water leaking out and to replace some of the flavour lost as a result of all the added water.

[lionessmom]

we dont eat any prepared foods except some crackers that are safe. everything else is made by me. the kids have really taken to this diet. they said they dont miss the sweet taste of stuff, it made their teeth hurt. they are all acting better and looking happier than i have ever seen them. it makes my heart glad. i will certainly try out your ideas. i bet they will love it.
i stay away from any meat that has anything added to it. i usually go to a meat counter. and i am looking for uncured bacon.
we all have soft teeth here. i have all mine crowned at 35. my youngest started showing signs of demineralization. which preceeds cavities. i have added cell salts to her day and it has made a big improvement. my husband step daughter and oldest daughter all seem to have great teeth though. i have been choosing foods high in nutrition. i like to make bone broth and use that for making gravy or soup to get added calcium and stuff. we also buy organic whole yogurt and milk. the dextrose has given me energy i have never had in my entire life. it makes me wonder if i also have a problem processing starches and stuff for energy.

[esmee]

dear lionessmom,

just wanted to say that my grandfather was a borderline type II diabetic, as is my mother, my uncle (mother's brother) is a type II diabetic, and his son (my cousin) has a daughter who was diagnosed with type I diabetes at age 2. I, too, think there may be some shared genetic reason for this. I suspect that carriers of an HFI gene may also have compromise fructose metabolism, but just not as bad.

esmée ♥