New here! Question~

[billiejh]

HI, I'm new here. My 3yrold daughter is suspected of having metabolic disorder, most likely HFI. She sees gastro and metabolic docs. Also has many food allergies, (dairy, eggs, etc.) and has an immune deficiency, and probable celiac(as I have). She vomits if we give her about 15 grams of sugar. She seems to tolerate 2-4grams a day - half of a allergy free cookie. But even that can give her wet/multiple bowel movements. Now as I have tried to introduce pork, turkey, and tuna in last couple months, that has made her vomit. Anyone else know anything about that? She tolerates chicken, so it's not a protein disorder. She tests negative to those proteins allergy wise. Could there be a link? Thanks for any feedback, I have been reading your posts for a year and a half now. Great info and support.

[toothfairy]

To All:
Is modified food starch or corn starch a problem ? I keep seeing it on the foods labels where I would think the sugar content would fall .
What's the scoup with pumpkin. I have a pumpkin pie eater, which i think i could work out the recipe if pumpkin isn't a no. It's a gord like squash, which I had no reason to ask if it was ok. I can't find either one on the HFI diet list #2from BU.
Made my first batch of homemade ice cream . What a happy boy, it was delecious! I'm still working on the bread sometimes it's good, other times it's falling. He hasn't been sick since I threw out the stuff from the local wine and beer making store. I think I needed the dextrose to get more sugar in his diet. It took forever for it to come(BO) but I've ordered plenty.
Next week we get our HFI test.Finally the DOCTOR called me, seems he hadn't been getting the messages or request. He call after a friend went to him in the hospital and explained what a mess i was in. D was having low blood sugar at school. The teachers, coaches and other calling freaking out. Then of course I freaked out. Thanks to colourmist blog on garage sales episode I finaly figure out what the issue was and what to do. episode He is 100% better. We have even gone two weeks without a low blood sugar spell! It's been a real adjustment but I am seeing wonderful results. He's getting his teeth,gained 4lb in two months, he even looks taller! Still the littlest guy on the ball team but growing :-)

[Tammy]

I agree with Fred on all.

Regina doesn't do pumpkin or any kind of squash. It would be nice at Thanksgiving if she could. But she does do any kind of starch. Modified starch, corn starch, any of them.

So glad to hear the diets working for him. It makes it much easier to stick to it when you can see what good it does.
Tammy

[lisa]

Toothfairy: Do you have access to rhubarb there? He might enjoy that in a pie...or maybe a vanilla cinnamon custard one???

[lisa]

billiejh: Looking back on the beginning, I believe that many of Nate's symptoms were from complete fructose overload. Once we got his system cleaned out and gave it a chance to recover it was easier to tell what he really could tolerate and not. That is very difficult if you are dealing with the possibility of it being multiple intolerances, allergies, or disorders. Good luck!

Nate only eats poultry, but I believe that is just part of being a picky kid.

[billiejh]

Thanks Fred and Lisa for your input. I think you are right Lisa, her system is hardly functioning right now, and maybe it will be easier to tell about things as her system heals/rests. Is rhubarb allowed? I didn't think of that. Also does anyone else have problems with certain kinds of potatoes? My daughter seems fine with old white ones, but yellow and red, and defenitely new ones, give her diarrhea, also the way we prepare them seems to make a difference, such as making her fries at home, if they are fried too dark or at too high temp, she will get diarrhea. Does this mean there is more sugar in them? Sorry, one more wonder, I made her birthday cake, hard task omitting gluten, eggs, dairy, sugar, but it turned out okay, edible, I used Splenda in it, but it made her sick anyway. I thought Splenda was okay, is that wrong?

[colormist]

Splenda isn't okay. It's made with Sucrose, which is a no-no. Some people do okay with Stevia, Malitol, and Aspertame. People that think those are too sweet do okay with Glucose and Dextrose. And there are people that don't like any of those.

As for the potatoes, red ones are more fructosey than the white ones. I haven't tried yellow ones--in fact I didn't know there was a difference between yellow and white. I don't know about preparation. I'll defer that question to someone else.

I haven't tried rhubarb in a while (since I was very young and ate it out of my grandmother's garden), so I'm not sure if it's okay or not.

[millan]

Jun 25, 2008 7:58:56 GMT -5 colormist said:

I haven't tried rhubarb in a while (since I was very young and ate it out of my grandmother's garden), so I'm not sure if it's okay or not.

Rhubarb should be okay.
According to nutritiondata there's about 1 g of sugar in 122 g of rhubarb (as much as cucumber!).
I have a Swedish list that has an ever lower amount for rhubarb - about 0,5 g in 100 g of rhubarb.

I make rhubarb pie - with no amount of sugar substitute at all when the stems are small and newly picked. I use a miniscule amount of a sweetener later in the season when the stems are thick and more tart. A bit of cinnamon goes well with it for those that can eat that.

[lisa]

There is a great recipe for rhubarb jelly on this site which I make regularly during the summer. Nate has had no issues with it, but he is DFI rather than HFI so there may be a difference. I had to stop giving it to his preschool because he would sneak in the refrigerator and eat it with a spoon. Using orange flavored SF jello in the mix is my favorite as it makes the jelly taste like a tangy apricot.

We did find a SF rhubarb pie at the store once, but he would only eat a 2 bites out of each slice. I'm not sure if it was too rich, too sweet, or something else. He never got sick from it though. I believe the sweeteners used were maltitol and aspartame.

Nate does not like potatoes other than the occasional french fry. I think he is the only one.

[millan]

Jun 25, 2008 13:59:11 GMT -5 lisa said:

Nate does not like potatoes other than the occasional french fry. I think he is the only one.

Not the only one. I don't like potatoes either.
I think raw potatoes, and french fries, are ok (not great, but ok), but have never, ever liked them boiled. I do eat potatoes when I'm served, but don't prepare them for myself normally (maybe something like 10 times in my whole life).

[toothfairy2]

D never liked French fries until this diet started. I thought he was the only child on the planet who wouldn't eat fries. He would eat mashed potatoes rarely. All other forms were something he wouldn't touch. He didn't like carrots unless raw or sweet potatoes either. He liked corn but wanted it fresh still on the cob. He was all green veggies, salad, and tomato man. The greener and the darker the better. Loved chocolate but not candy bars really preferred sweet tarts and smarties to anything else. Never crossed my mind why. After being on this site I can see a pattern with all the DFI and HFI preferences.
Got Rhubarb last night in the frozen food section. For newbies like me it's with the frozen fruit not the veggies. I have been searching for a month for either fresh or frozen. It's not commonly used in this area, I had never bought it or seen it that I remember. I'm going to try making the jelly. See if I can't restore the PBJ sandwiches to his diet. He misses them. Rejected the sf peanut butter and sf jello sandwich, I tried. He pronounced it" flat weird" mom. He is eating lots of my experiments these days.
HFI test was sent to Boston yesterday. ;D He officially gained 7lbs since his April visit and the fructose breath test. This diet is really making a difference. Thank you all. I couldn't helped him without you. The Dr's still haven't given me any nutritional guide lines.
Do any of you know where I can get vitamins without sugar or sorbitol? The DR informed me he thinks they don't have enough to make a difference. I'm not buying that info. when one piece of sugar-free gum makes him sick.
:-*Special thanks to Fred, Tammy, Julienc, Lisa, and Colormist. You guys keep it up you are making a difference.

[colormist]

I use Basic Vitamins. www.basicvitamins.com/scripts/prodView.asp?idproduct=1770
They don't have any sugar in them at all and they don't taste like much and they don't dissolve into nastiness very quickly in my mouth, so he might be able to tolerate them.

I think I actually have the ones with extra iron: www.basicvitamins.com/scripts/prodList.asp?idCategory=48
Kids multivitamins might have sugar in them--yeah, they do.

[nicole]

Hi, Toothfairy.
As far as vitamins go. I was useing sundown. But now they have put sugar in it. So now I found Natures Made Multi For Her. They do make a regular one without sugar. I'm not sure if you can get it were you are.
Billijh- Splenda is a bad No No for HFI people.