New Member - Old HFI

[Tammy]

Hi Fred,
It's nice to hear from someone who probably knows more about this than I do. I have been dealing with this diet for my daughter for over 20 yrs now. We have most things narrowed down to whether she can have it or not. One item has always been a stopper for us, though. Popcorn. Since it is only the "bran" of the corn that she can't have, and there is basically no calories in plain popcorn it makes it seem like a maybe. But then again, it probably still has the bran in it, therefore making it a no-no. The dieticians in my area can never find a real good answer for me. And my rule of thumb is if I can't be sure, then it's a "no". So I have never let her try it since she gets violently sick with just a small amount.

So I guess my question for you is, Can you eat popcorn? And how sick, and in what way do you suffer from eating something by mistake? I know there are different answers to this question, but it's always nice to get others stories.

Did you meet Peter Rethazy? He is also in Toronto and I know he makes it a point to try and meet other fellow sufferers. I haven't ever met him, but have e-mailed him on occasion. He doesn't come to this site often, but you can find him on the swiss site. He has often mentioned trying to set up a meeting site sometime for all HFI, but it has yet to take place.

It was nice to hear from you, and hope to hear more.
Tammy

[Tammy]

HI Fred,
My daughter was diagnosed 20 yrs ago. She was not quite 3yrs old at the time. She had severe cirrhosis of the liver among other things at the time. Her doctors only took 2 yrs to come up with what the problem was. You might even have been instramental with this. A young dr relocated here from Boston and he had seen a case of this in a person from Toronto, which is one reason he thought about it as a possibility. (His name is Martin Maksimak)

At that time, I worked with a dietician who was very helpful with what contained fructose. She is the one who first told me it was the bran of the corn. That is why corn itself is not allowed, while corn starch, corn oil, corn flour is ok. Even the corn sugars are ok if you can get them plain without other sugars added.

One other thing I have noticed on the swiss web site, and now you mentioned it is that a lot of people say lemon is ok. My lists have always said no fruit at all. Includding lemon, although another list says it has very little in it. I have never given her lemon just to be safe. What do you know about it for sure?

The dietician I worked with back then has long since retired. When I go to see one now, I spend most of the time telling them what she can and can't have. I haven't found another one like her since. We just spent several weeks in the hospital for an unrelated problem and I was the one who they asked about food questions. Even the nutritionist there would stop and ask me. So I was very fortunate to have worked with the first lady.

It's very nice to hear from you and hear first hand that you can lead a very normal life for a very long time on this diet. I think it is very comforting for all the new people just dealing with trying to figure this diet out.
Tammy

[KERRYNz]

Hi
this is my first time so help me out where i need help please.

I just looked up the " nutrition resource and found many things are listed as none sugar such as wheat germ

So i would maybe question what they identify as sugar.

Does anybody have any comments on why some can or can't have malterdextrin?

I have some recepes i'll post later my daughter is now 24 months, and loves food.

Her reacation to any thing is medium considering the small amount she tries before rejecting the food. I was supprised at her definete no to poppy seed is this a no go to other Hfi people. Her tolerance is very low to any fructose, even with brocoli she only handles it evey other day.

Well i've finally posted Want to say Hello to all and any comments are greatfully accepted.
Best regards Kerryn

I looked up corn bran on “Nutrition Resource” at www.nutritionresource.com/data.cfm?n=20015 and it does not list any sugars. Where did you learn that corn bran contained fructose? According to my diet, wheat bran contains fructose and I have to be careful about anything with whole wheat in it.

[Tammy]

Hi Kerry
My daughter is 23 now. When we first started this diet, we worked with a dietician who did a lot of research. When I asked "Why if corn sugar, corn starch, corn meal, and corn flour is okay, then why is corn itself not ok?" Her research said the germ of the corn is what is bad. I do not know where she found this info. There was no computers or internet back then, just hard work. Unfortunately, she is now long retired and I have no idea how to ask her.

My daughter's tolerance is also very low. She can handle a very small amount of broccoli (or the few others allowed) only once or twice a week. She does fine on maltodextrin, though. As to why some can't tolerate it, I can't answer. Maybe they have a slight variation of HFI. You will find some people telling you things that are ok for them, when in fact they should be avoided.

Any wheat germ or bran is supposed to be avoided, but my daughter does fine with small amounts of whole wheat. I think its a case of when an ingrediant list says "whole wheat" there is actually very little of the germ included. This is also why white rice is ok, but brown is not.

I'll look forward to your recipes. I mostly just adapt what I make for the rest of the family, but I'm always on the lookout for new ideas.

Tammy

[kerrynz]

Hello Tammy

Thank you for being there and taking the time and interest to answer.

I first wondered what was wrong when she was 2 days old and the nurse asked the question “ what is wrong with your daughter why is she vomiting? I angrily looked at her and said how would I know you’re the nurse” I later discovered the formula she was put on due to my surgery was the problem. This corrected it self when i resumed feeding

Then again when she reacted badly to vaccinations later I discovered they are full of sorbitol in this country. Then the first reals hint of where we were going at 5mths she loved rice cereal but recoiled at fruit then accepted potatoes.

By 13mths, following instinct and hassling doctors one said fructose. I musted have skipped that lesson at school, I needed to take a step back and first learn what is fructose then how is she upset by it. Hard to do even today I already sorry for the difficulties you would have faced all those years back.

But now the provisional diagnosis of HFI. We have spoken to Drs about a challenge but they are not set up here to do it safely and her reaction to even a little is strong and fast so we are slow to allow her to undergo it until they can control the outcome a little better.

I’ve spent hours printing out all the postings on this and the other site, then reading and re-reading them. Most of it reaffirms and teaches me all over again the basics of living with HFI

I noticed chalie’s post. Her daughter ‘s sleep reaction is a carbon copy to mine. Its different if she is teething or sick. The HFI reaction is always the same, so i get her out of bed give milk and or porridge to stop the hypoglycaemic reaction and then we all sleep. she's not her self the next day and slow to resume normal eating but the milk allways helps her.

I’m just starting to wake up to the build up over several days problem I could do with more info on this.

On all the diet lists the only veg she will accept is broccoli and potatoes both of these I have over done and now she shy’s a way from them.

Is barley Ok?
Your daughter gets migraines. I think my does to get headaches it doesn’t stop her just seems to hold her head ECT. At 25mths it’s hard to ask. Please tell me more about this Do you treat the symptom? Ie pain tablets?

I have walked the supermarket isle. Here in Australia there is not enough available to make even one meal. I have to start from scratch and freeze the foundation for next time.

Can you break down bisquick and bags of dried beef maybe I can recreate these in my kitchen.?

Food colour I’m supprised we can use this?

I grew up with an in built diet of 3 veg and 2 fruit every day. My mindset doesn’t allow for pancakes with nothing on them or chicken with cheese sauce as a main meal as all that’s required. A weeks diet plan for your daughters diet would be such a great help???/

Have you ever heard of physilliun husks over there?

I know dieticians do a great job but until they live with this 24/7 they don’t really get the opportunity to fully grasp what’s happening.
Well thanks for listening sorry I talk so much.

If any one has any imput I’d loved to hear it.
Thanks again tammy.

Regards Kerryn

[Tammy]

I also grew up with the veg/fruit everyday idea. But you have to just toss that whole way of thinking out the window. Now you have to think of filling the belly with safe foods. Forget about so-called "healthy" eating. Healthy for HFI is meat, pasta and dairy. Their bodies react differently than ours do. They seem to get the nutrition they need from the very limited diet. One doctor even posed the possibility that they have a "cleaner" system without all the sugars "clogging" it up, which may be why they can get more nutrition from things they do eat. Of course, this is only a theory.

As far as a weekly diet plan for my daughter, that is easy. Meat, pasta, and dairy. That is it. She has broccoli once every 1-2 weeks or so. Never more than once a week. And only a small amount when she does have it. She does eat dill pickles (be careful here in the states as I have just saw some dills with sugar in them) more often. So cucumbers are her only "green" vegetable. She eats potatoes of some form just about everyday.

As far as physilliun husks, I dont know what that is. Maybe someone can answer that?

The last time my daughter had the headache, I did give her pain meds. I don't know if they help or not, but they certainly don't hurt and it makes me feel like I'm at least trying to do something to help. A completely dark room helps, too. I give her tylenol. She can also have Motrin (this is ibuprofin, Advil is also, but contains sugar) I'm not sure what you have in your country, you'll just have to read labels.

Bisquick is kind of like a pancake mix product. I'm not sure how you would make it yourself. I think it would be close to my recipe called baking soda buiscuits. As far as dried beef, that is what is sounds like. Real thinly sliced beef which has been cured and dried. Not dried as hard as jerky. It's still more like a sandwich meat, only salty. Maybe someone else has a better description?

I'm sorry this probably isn't much help, but I'm not familar with what you may have available.
Just keep looking and I'm sure it'll work out. Good luck.

[Karen]

I understand that most, if not all here, suffer from HFI. My diet is pretty much the same as yours. Right now I am trying to find enough information for my research for my dietician, because she has not had to deal with this before. Any one have any results for great information that I may be able to locate for her or anyone else for that matter?

I would also like to agree with Fred on Tammy's first paragraph. That did hit right on the nose. I would also like to add that my doctor that diagnoised my DFI/HFI (not sure which) put me on EFFEXOR- he says that it helps slow down the bowels, anyone else on anything to help out??

Eat healthy and safe...
Karen

[Andréa]

Hello,
My son is still a baby ( 1 year and 10 months old). And I would like to know about the hepatomegaly - Does it reduce? My son stopped to grow up. Is this could be resolved with diet restriction?
I´m very worried about these questions...
Thanks,
Andréa

[charleslmims]

I see this is an old thread, but after 60 years, if it tastes sweet it will kill you. I eat a lot of real food, dark green vegetables and white rice real potatoes real celery and Mexican corn chips as the masa is leached in lime. Look on Dr. Toland's web site and it has a list of do and do nots. Charles L. Mims

[ilan]

Hi Fred!
Are you still in Ontario? I live in Toronto and while I'm moving out west very soon I'll be back quite often as my whole family is here. I'd love to be able to meetup with a fellow HFIer....


One question for you. Why is it that you see an endocrinologist for your HFI? I used to see a gastroenterologist and now see a metabolic geneticist, I'm concerned that maybe I should be consulting an endocrinologist....

[charleslmims]

I have been exercising every day to keep my joints working. This helps me avoid periods of low blood sugar. I seem to have a HFI only and not DFI,but my diet is heavy on meat and real carbs. I eat a lot of green leafy (old world) vegitables and almonds. I am 60 and owe my health to a very smart Mother who raised three sons witth HFI. I guess my excess pounds are do to never cheating on the sugar and eating only real home cooked meals. I have talked wih the master chief at various places eat. Avoid Hamburger buns they have almost 12 grams of suagar in them. Charles L. Mims