Hi I'm new

[jeanee]

Hello! I am so excited to find this website. I have been trying to find out all I can about HFI because my 8 year old daughter was diagnosed by DNA testing about age 18 mos.. I have attempted to register with the support group offered by Dr. Tolan several times over the years without success. My daughter, Olivia was what I would consider classic symptoms of HFI at about the time of 5 mos. when I attempted to introduce foods to her all of which she would refuse and actually gag at the smell of. The only time she would ingest something inappropriate would be if it was fluids ie. reg.soda or flavored water that would set off the chain of vomiting and hypoglycemia which being a RN I recognized those symptoms and tested her blood sugar (her dad is diabetic type one) It was something that of course was not recognized by her doctor I was told maybe she just wasn't ready for food yet so I continued to breastfeed because that was all that she would take in without problems. I was thinking that maybe she had some weird pre diabetic thing so when I came across HFI I just knew that this was what my child had-mommy intuition I guess but now I had to figure out how to know for sure. I referred myself to a genetic doctor in Orlando who validated what I had suspected for months. It was both a relief and a scary unknown. I immediately tried to figure out what I was doing right and wrong with her diet and made all necessary changes. I am still concerned that I could be overlooking something. Her liver continues to remain enlarged and with "fatty changes". I am disappointed because I expected that without fructose in her diet that her liver size would eventually return to normal. I have so many questions. Where can I find a multivitamin for her? I hesitate to give her children's chew ables- I wonder if any vitamins are even absorbed if her body is rejecting the sucrose filled vitamin anyway. I wonder what vegetables are definitely OK since the lists I have seen are not always consistent? Whats the felling about popcorn and lemon juice? She eats both of these things without problems. Developmentally she is very normal both physically and mentally. She is in second grade and doing well despite feeling "different". The GI doc I took her to last did not feel follow up by him was necessary since things really haven't changed much. I was concerned about possible gall bladder disease(she has had a gallstone for about 3 years) I understand that this could also be associated with HFI. I wonder if anyone else has dealt with that issue? I am so thankful to be able to communicate with people with these issues and look forward to talking with you.

[Tammy]

Hi Jeanne,
Welcome to the site. Hope we can be of help, but you probably know by now what works for your daughter and what doesn't more than we can really say. Each person on here seems to have their own amount of tolerance to fructose.

It sounds as though you've done all the right things so far. Lucky little girl you have there. As far as Dr Tolan's site, the info on it is good, and we know for sure he updates it once in a while since he added a sugar chart not too long ago. But as far as the messages part, that hasn't worked for years. I was granted access and a password and all that good stuff a long time ago, but it hasn't worked in all this time.

My daughter also started out with an enlarged liver, but after being on the diet, it did return to normal. Maybe you are missing something that is hiding from you. I'm sure you've been over every ingredient label. Maybe it's just a case of too much of the tiny amounts are adding up. Maybe in something like vitamins. Again, it seems as though each person has their own tolerances.

One big problem is all the conflicting lists of vegetables. I pretty much follow Dr Tolan's. But even though I allow the ones he says are ok, I still have to restrict them to about once a week. So if she has broccoli this weekend, she can't have brussell sprouts until next weekend. Again, this is just her limit. There are a couple that seem to be ok unlimited. Potatoes, and cucumbers are fine for her even everyday.

As far as vitamins, the only one she takes is Vit C. That is the only one that the Drs ever felt was necessary. They would mention them sometimes, but since all her blood work always came back fine, they would say she must be getting what she needs.

I look forward to hearing some of your ideas, too. And any new recipes that work well.
Tammy

[julienc]

Hi Again! I'm glad you found this board.

I have also tried to join Dr. Tolan's group, but no luck.

As for the veggie question, the only veggies that are consistently on the OK list are spinach, cauliflower, and green beans. There seem to be many others on the iffy or "in moderation" list. I'm surprised your GI didn't feel a need to follow up if her liver did not go back to normal.
How long has she been following an HFI diet?

Unfortunately I can't help on the gall bladder or children's vitamin issue.

I do eat popcorn on occasion, though I'm not a big fan. I put a slice of lemon in my tea and lemon juice in food here and there. I used to eat lemons like grapefruit as a kid, and other than my tooth enamel, I don't think it caused me much harm.

As Tammy said, you have a lucky little girl!

[colormist]

I don't have any suggestions other than just skipping the vitamins. (Except Vitamin C) I didn't take any vitamins other than C as a kid and my parents didn't even know what I had until a year ago.

I'd also second checking the labels of everything. You'd be amazed at how sugar hides in everything. I think we have a list somewhere around here with all the different types of sugar.

[jeanee]

Hello I'm so excited to hear from you guys I appreciate all the suggestions- I really can't figure out where I'm going wrong. I started to think that this might just be "her" normal liver. Do you guys mind if I ask what kind of liver studies does your doctor recommend? Olivia has an abdominal US every year and liver enzymes at least twice a year which usually range in the 60's which is slightly elevated. Her diet does not even include the allowed vegs except for potatoes. She eats plain pasta with parmasan cheese, baked potatoes with sour cream, hambergers-plain no bun, french fries, yellow mustard, cheese its, goldfish, chicken nuggets-Tyson brand uses dextrose, pixie sticks(wonka) sweetarts, sour shockers, milk, diet coke, diet sprite and diet sunkist, water with lemon juice. That pretty much sums it up. She doesn't like yogert that much, although I found one Dann*on light and fit low carb vanilla. I was also told in the last year that splenda was ok although she doesn't eat anything with that. There are several kinds of popsicles that I found but the only one she likes is fruit flavored sugar free ones and she will only eat the orange flavor. She has eaten this way pretty much her whole life with the very occasional reg instead of diet soda when we are out. Someone always double checks her drink-I'm not sure she would be able to tell the difference and I don't want to chance it. She thankfully learned how to swallow pills at 3 so that helped with the whole medication issue- she could not tolerate even 3/4 tsp zithromax without vomiting. When she had her tonsils out they mixed codeine with stevia for her but its hard to get all you need compounded like that. I gave up on the vitamins a long time ago, but I still worry what she could be missing. Someone told me there was an actual vitamin blood test that they will do. I heard it was expensive though. Thanks again for all your thoughts and suggestions-they are VERY appreciated!!!!

[julienc]

When I was diagnosed this past summer they did several blood tests to check my liver - not sure specifically what tests, but they all came out normal (according to my doctor), so I didn't inquire further.

Your food list generally sounds okay, but the diet sodas are a bit worrisome. I thought I had read somewhere that Diet Coke was a no-no?? I also thought that Spenda was a no-no. Can anyone else confirm? As for the goldfish, the only ones I have found that do not have sugar in them are the pretzel goldfish.

Like Fred mentions, I hated anything sweet growing up as a kid, which turned into my built-in defense mechanism. That's what makes me nervous about developing a taste for sodas - so many use different kinds of sweeteners. To this day I only drink milk, water, and iced tea. Kind of boring, but I've never known anything different.

I do make an exception for pixie stix, but I consider those more tart/sour than sweet. ;D

[colormist]

Splenda is a definite no-no. It's made with Sucrose which is a definite no-no. That might be your problem right there. We get a little annoyed at Splenda. It's taking over the artificial sweetener department. Whereas we could eat things sweetened with aspartame, now those things are being sweetened with Splenda.

The things I worry about on your list are: sweetarts, sour shockers, diet coke, diet sprite and diet sunkist

We do eat sweettarts around here, but the general suspicion is that the "flavors" ingredient might have some fruit derivative. I only eat the lemon ones anymore. If I eat a whole stick of sweettarts, I tend to get sick.

Sour Shockers I haven't tried in a while. I remember reading the label after I found my diagnosis and saw that they were made with Corn Syrup (which may or may not be a no-no), so I didn't eat them.

Diet Coke, Diet Sprite, and Diet Sunkist are no-nos as far as I recall. Like Julie and Fred, I don't drink sweetened beverages. Diet Coke is definitely sweetened with Splenda. I think the only pop that is still sweetened with aspartame is Diet Pepsi. So, if you still wanted to allow her to drink sweetened beverages, I'd stick to Diet Pepsi.

Goldfish do have sugar in them. They probably don't have enough to make her visibly sick, but there is enough to make her "sugar-stupid" which is what I become when I eat something I shouldn't and then just sit there and stare at my computer at work because I can't figure out the most-mundane things. She might get a little sluggish and seem less alert than usual.

[Tammy]

As far as the sodas, Regina drinks them. Splenda is definate no. When it first came out, Dr Tolans site said it was probably ok. We tried it once, and she got very sick. Shortly after that, Dr Tolan changed his site to say no.

Some diet Coke is still ok, but most of it now uses Splenda, and according to their hotline, All of it will eventually. Diet Pepsi is ok. Some generic brands of diet colas are and some aren't ok. You have to read every bottle to be sure. I've never given her the diet sprite, 7up, etc because they contain lemon and lime. Not much, but I've never went that way. I would think the diet sunkist may also contain orange- is it natural or artificial? There are some diet root beers that are ok if she wants change from the pepsi. We can even get diet birch beer in our area, but not sure if that is everywhere or not.

Regina mostly drinks milk, but she has a little soda several times a week with no problems. I don't limit it, she always has some on "her" shelf, she just usually chooses milk.

[olivias mom]

Hey guys I'm confused about the soda issue. The diet coke I buy has aspartame not splenda. They do sell a diet coke made with splenda but I don't buy that one. My daughter doesn't eat or drink things with splenda but my dietician assured us it was ok last summer. It's interesting that she doesn't choose to eat it. She won't even drink coke zero (which has aspartame) because it tastes sweeter than diet coke. What is the feeling about corn syrup? Some sources say its ok-what do you guys think about that? Anybody have suggestions for school lunches-I did find hersey brand lowfat milk in a "juice box" That's all I can count on being eaten during the school day. I know you said you were concerned about diet coke diet sprite and diet sunkist. All of those contain aspartame, which confuses me on the concerns. Is there something else in there that is concerning? I'm going to take goldfish out of the diet. Anybody see any other foods that are questionable for you? My goal this year is to tweek her diet and get her liver to normal, so I'm grateful for any suggestions that work for you. I know everyone is different, but I would like to know what works/doesn't for you even if ok per list.

[jeanee]

I know the is off the subject but I'm curious about nationalities, regarding HFI. I read that the highest incidence rate is in Austria. Not trying to get to personal I'm just curious. I come from an Irish/german/swedish backround and my husband is german/austrian. This also might sound crazy but my husband, his sister, thier uncle and on and on all have diabetes type one. I know that this is an completely different enzyme, but I read somewhere in this website that there is a family with one HFI child and one diabetic child. Any thoughts??

[colormist]

There are a few different types of corn syrup. One is a sweetener, one is a thickener. The thickener doesn't have sugar, the sweetener is straight up pure sugar. Usually colas are made from corn syrup.

For school lunches, I usually had a peanut butter sandwich and some chips. I didn't know they had milk in juice boxes. I have seen little baby water bottles that would be nice for lunches. My mom always put milk or water in a thermos for me--or I'd just buy a milk at school.

Usually we HFIers do fine with small amounts of lemon/lime. I'd be more concerned with the sunkist drink. It just depends on where the flavoring comes from.

Jeanee - My geneticist tried to get my background. I didn't know how far he wanted me to go back. I'm a melting pot. I've got lots of Native American, Irish, English, French, Scottish, German, and a few other nationalities that I've forgotten--and that's just one my Mom's side. I don't know of any Austrailian, though. I'm mostly European in descent. My mom and father are borderline diabetic--but only because they don't exercise and eat right. My mom has hypoglycemia (that's how I knew I had it).

[julienc]

Jeanee,

I think this is one of those situations where your nutritionist is just plain wrong on the Splenda issue. (I hate to say.) I wrote a post somewhere else how my nutritionist said I could eat green peas. We just need to be sooooo careful, and that's where websites like these can be a big help.

As for the soda thing...technically aspartame is okay. But as we have written, most of us steer clear of most all sodas, mainly because of the super sweet taste. I wish I could help more, but I just don't know. Maybe you can eliminate and see if it helps her liver? There are some other options for beverages in school lunches (definitely more than I had as a kid) like the milk "juice box" you mentioned, small bottles of water, bubbly water, and I have found bottled iced tea completely unsweetened.

Have you tried Triscuit crackers? That is a great safe snack cracker and would be good for lunches. Cheese sticks are also great.

As for heritage, I think most of my ancestors are from England and Germany. We have absolutely no known history of HFI or diabetes in my family until now.

[Tammy]

If you're still able to get the Diet Coke with aspertame, then that is fine. But watch EVERY bottle. When I first saw the Diet Coke with the "New" label, I called coke and asked them. They are in the process of changing all their products into sucralose (splenda). I have seen both kinds in the same machine in our area. Now it's mostly the bad one.

Pure corn syrup is fine. The problem in the states is that they add Fructose to the corn syrup. Hence, "high fructose corn syrup". Even if the label just says corn syrup, it usually has the fructose added. I've called so many companies on this and they have all told me the same thing. It has fructose even if it doesn't say so. So we never use anything with corn syrup listed as an ingredient. With the exception of Sugar Free Cool Whip. I calle the company on this, and it turns out to be fine. Regina gets very sick if she eats anything wrong, and the SF Cool Whip works for her just fine.

Nationality? Well, We're a little of everything European. Dutch, German, English, French, I'm just not sure what all is in there. But my favorite story is that I'm from a noble line. When the king got the maid pregnant, he put her on a ship and sent her off to America. My grandmother's, grandmother was born on the ship. My great-aunt (the oldest daughter down the line) had the tray that they served her with on the ship. So now I like to tell people that I'm royalty. ;D Of course they tell me that makes more sense when they hear the rest of the story.

[millan]

Hi Jeanee.
It's good that you're careful in what you're offering.

I'm sure the labels are carefully read, but I have to ask:
The hamburgers - are they without onions?
The mustard - is it without sugar?

As others have said, vitamins are mostly uneccessary, apart from vitamin C.
(And folic acid, but that's not really important until your daughter is grown up and are considering having a baby...)

I eat plain, salted popcorn sometimes.
I normally have a big squeeze of lemon on my fish and sometimes in my water.
I sometimes eat a lemon slice as it is without problem.

As for vegetables, I do not eat cauliflower or cabbage even though they're on the approved list. I have always hated them and my mother was wise enought to let me decide what to eat without forcing me and waiting to see if I became sick from it, and I was a very healthy child (at least after they figured out what was wrong with me). :-)
I eat cucumber, spinach, green lettuce and iceberg lettuce and TINY amounts of green pepper, haricout verte and broccoli.

My diet has always consisted of meat, chicken, fish, rice, pasta, eggs, milk-products, mushrooms, white bread - and the occational cucumber slice. ;-)

I'm much like Fred (and to some extent julienc and colormist), I don't normally eat or drink anything sweet whether I COULD eat it or not, since I don't like the sweet taste, and that might make it easier for us. There's not much chance of something "slipping through" all the different sweeteners that we can or can't tolerate.

I drink milk, water, brewed tea and sometimes coffee.

For snacks I usually stick to unsweetened biscuit/rusk but there's not much energy in it so I wouldn't advise it as a lunch for a growing child, though I see others have survived on it.
I'd at least try for plain youghurt or cottage cheese or a hard-boiled egg or something like that to go with it.
Other easy-to bring lunches:
A salad with lettuce, cucumber, and sliced cold meat.
Cottage cheese with shrimp - and crackers.
Bake your own bread with chopped cheese and ham.
Make your own pizza without tomato-sauce.

As for nationality, I'm Swedish.
There is no known history of HFI in any of my relatives.
A few of my grandparents have gotten diabetic in their old age, but not anything else.
In Sweden, most known cases of HFI has been in the north, and both my parents are originally from the north.