Question on safe grains...

[Tammy]

I only know a couple of these for now.
corn meal is ok (I can't explain why, it doesn't make sense to me, but it is what the dietician told me way back when)
Brown rice is NOT. Only white rice. (back to the "germ" thing again)

The oatmeal I use has whole grain rolled oats. She does ok if I limit it to once or twice a week. Not everyday. I think the whole wheat is the same. I don't know about the other grains. I tend to stay away from them. We eat mostly white grains. Same with the pasta. White is best.

Now......If I say I limit something, I am talking in the whole diet sense. Example..... I say she can have oatmeal twice a week, and I've said she can have broccoli once a week. BUT she can't have oatmeal and broccoli in the same week. If she gets oatmeal, then she gets nothing else limited that week. She usually has whatever the "limited" thing is on the weekend. It's easy to remember that way, and it's "special".

I was told that potatoes are best fresh. The longer they are in storage, the more the carbs will convert to sugar. But Regina has no problems with any type of potato at any time. I do not limit them at all. Actually, she usually has some form everyday.

After you've eliminated all fructose for awhile, and your child is in a pattern, you'll be able to tell when too much is too much. First sign for Regina is diarreha. If she eats something that's a complete no, then she gets a terribel migrane-type headache with vommitting.

If I'm not sure of something, it quite often follows the rule, if it's healthy for others, it's usually not good for HFI.

[kerrynz]

;D
Hi Tammy and all.

I only sit down to type once an a while so it’s a bit long each time

Something’s I do with the seconded bull headed little brat on this planet. Things that help Zanoah eat. It breaks all rules and she sits up on the kitchen bench as I prepare all foods. I name all things on the plate starting with daddy’s big plate has chicken potato rice etc. Mummy’s medium plate has chicken potato and rice, Zanoah’s little plate you get the pic …. And I don’t name other vegetables we are eating, on difficult child nights who ever is the parent of the day in child’s eyes [for whatever reason] will announce I’m eating my rice aren’t you just once or twice., Its amazing what we get done with peer pressure.

Things that help with new foods I haven’t had to do this for a while. But again when they were not sure about her diagnosis they asked us to ENCOURAGE her to eat all things but I always tested her. [Some who get real sick real quick can’t use this] but for Zanoah it has saved us time and again The example Honey. We were asked to try it. I allow her to do the try by putting her finger in jar she gets a tiny bit on finger and taste at her own rate [sometimes she just smells it and says no]

But with honey she wanted to taste. She thought about it for a short time and asked for more. Its interesting to watch her take the littlest amount, she tried the second time, then I offered her the third taste she happily put it on her finger held it in the air then with a smile wiped it on her t-shirt and has never asked for honey again.
With this in mind I again [naughty] gave her plain peanut better. Mixed with tuna on saltines, She was up on the bench watching the proceedings, tasted the tuna said it was ok but the kid thing doesn’t like. Then tested the peanut butter three times but the third time took a big hunk. So I happily mixed it with tuna onto the saltines, with her approval and we had lunch.

Lindsay wonders if peanuts are ok for some, because they grow underground where the sun can’t get the sugars going same with potato. It’s just one of those thoughts.

Squash Zanoah won’t eat be she will eat Golden Zucchini not green, black or white just golden and only when in season. She loves it but I have it on her limit list. it was on our original diet list

Thanks Tammy I was interested in your veggie list. I now realise the list Drs gave me mostly was for DFI and not HFI hence this is why I struggled with so many strange questions.

Tammy the word slight variation, Please expand greatly on this. Plus, another one of my thoughts. An example my husband has a muscle problem debilitating but won’t kill you, fair enough. But after they say it can’t kill you they then say the heart is a muscle and is greatly disabled. Because of the problem this can cause a heart attack and they do kill, but his muscle disease won’t hurt him.

WHY do I say all this Because HFI won’t cause brain damage they tell us. But Hypoglycaemia will cause it. Its easy to find on e-medicines web sight just search hypoglycaemia. When our children were babies who knows how bad the hypo’s really were I know one of her worst were from a vaccination she was given. It was the first time I really knew there was a serious problem. Any way just a thought.

I laugh when Fred says hate eggs. The only way Zanoah will eat them is raw. Yuck or if I hide them in something.
And Lindsay loved the baked macaroni and cheese but she will only eat it separate, never together. We are a strange lot Yes.

My questions, Please I so appreciate this. What do we put on our bread? How do we present pasta? Plain or sauced? Would any of you eat biscuits with Malted barley flour in them? Have you heard of or tried Vegemite Zanoah has it on her limit list, plus its full of b vitamins a plus. Is used manly as a spread over here.
Is it necessary to have a limit list, is it just to add treats, or is there another value for it?

Have a nice day talk again soon
Kerryn

[Tammy]

Hi Kerryn
When I said Regina has a slight variation it is because it is what the drs are saying now. They didn't when they diagnosed her. They just said HFI. After many many dead ends trying to find the problem, they did an open surgical biopsy on her liver. It showed the HFI. Now, twenty yrs later, the internet is big and I have heard of Dr Tulan in Boston who has much easier tests to determine HFI. Also, to get on his website (which doesn't work now) you needed a password from him to post. So my Dr here talked to Dr Tolan. We sent a blood sample to Dr Tolan just for research sake. The tests that Dr Tolan does did NOT show HFI. He sent me a letter explaining that he only finds 80% of HFI cases. Since she had already had the positive findings from her liver, there is no question of her having it. So he said she must have a slight variation which puts her in the other 20% that he doesn't find. It doesn't really make much difference in the diet.

I allow Regina the things I saw are limited because she likes them. They were on some lists and not on others. (again, this was 20 yrs ago, but not much has changed in that respect). So we let her have them. If was with trial and error that we discovered she is fine with the questionable items as long as it isn't every day that she eats them. Other things are because it was easier for me (like instant oatmeal for breakfast when we were running late for the school bus)

As for the underground thing, carrots and onions dispute that (although I allow a small amount of onion powder when it's in premade things)

Honey is definitely on our NO list. So it must be another DHI thing.

Regina eats pasta with butter and salt on it. that's it. We sometimes add shrimp or tuna to it, but defiantly no sauce. Tomatoes are a NO. She loves it that way. Another main staple in this house is spaghetti. We eat sauce but she doesn't.

If she is eating plain bread or toast, then just butter. If it's a sandwich of some kind, then also a little mustard. I also put a recipe for mayo on the recipes. Cream of Dried Beef (also in the recipes) is good on toast, too. Different kinds of cheeses are good on bread. Some are spreadable (like cream cheese)

I've been watching the maps. Everything still seems to be the right colors. No gray Australia yet.
Tammy

[Tammy]

Just a note on the mustard. I've always wondered about the vinegar issue, too, but vinegar is fine for Regina. Any vinegar. When I first started the diet, I just figured that cidar vinegar was a no-no, no one ever said. Then I finally remembered to ask, and was told vinegar is fine. So she's been eating it since and never had a problem.

So...that means most all yellow mustard is ok.

I'd be interested in the mayo, though. What brand is it?

Regina has no trouble with appetite. She has just been a normal kid with that. She went through times when you couldn't fill her up and also times when she didn't eat hardly at all. Just like her "normal" brother did. Don't forget, they are still kids, and kids will be kids. Don't overworry the HFI part to the point that they can't be kids.

[Tammy]

Nope, I've never heard of Whole Food Stores. Guess they aren't in our area. But that's ok. I don't give her anything with lemon juice. Some say that it's ok, but it's one of the "old rules" of no fruit, including lemon. So I just haven't ever tried it.

[lisa]

The info I got from my son's GI doc has nothing about whole grains restrictions. Are brown rice and brown rice syrup OK? So far Nate has not had any immediate reaction to the multi-vitamin he is taking which is flavored with brown rice syrup, but he was a bit hesitant to take it today (3rd dose). Seems the only things he has immediate reactions to (ones that I can see) are bananas and anything containing sugar, so I am concerned about delayed reaction more than anything else. He is not yet 2, so he can't really tell me himself. He's one of those kids that can have pneumonia and run around like nothing is wrong.

I'm concerned that people have been saying peanuts are a no-no. They are not on my list of restrictions from the doc. Well, I'm really concerned that I don't have a complete list. Help! I don't see the dietician for the first time until the end of January. Nate was just diagnosed on December 8th.

[Tammy]

Bananas, as ALL fruit, is NO.
White rice is ok, but brown is not.
Start with the lists at
www.bu.edu/aldolase/HFI/treatment/index.html
They are not complete, but it is the best I know of that is posted somewhere. It'll be a good place for you to start until you get to the nutritionist.
Until that time, the best rule is, if you aren't sure, then don't allow it until you find out different.