a very positive note

[claudiarivas]

Helloo to all,
Is been a while since I posted here, but I want to give an update to all of you who have help me during this year and 3 months.

As a quick recap to those who dont know me , my baby boy was diagnose at 5 months with HFI... He is now 1 yr and 8 months!!! and I am soo proud but most of all grateful to say that he hasn't vomited not Even ONCE after he got diagnose and haven't have any HFI symptoms.... He eats a lot of stuff and is very healthy.

So I just want to say Thank you to all of those who I have talk to in this board and have helped me...and also put myself out there to help any mother with whatever I can do, cuz I now how it feels to be lost and to be scared.... and even though I am no expert I have gone through the process and truly believe that a support group is so important to do this the best we can!

Also, I want to exhort to keep this proboard, because this truly have made the life of my boy better, and I have met some wonderful people and have develop friendships that mean a lot to me, so please lets not forget we are here to help one another!!!

So, thank you all and please dont hesitate to contact me [e-mail]

Claudia

[Tammy]

I'm very glad to hear that he's doing so well.
It's nice to have another parent on here for support that understands what we go through when we feel lost and alone.

Welcome to the "other" side of being an HFI parent! Now you can be one of us who says "Hang in there it - does get easier and less scary"

[nicoleh]

Hi Claudia,
I am so glad to see you back here on this board, I have been hoping to get in touch with you.

We are fairly certain that our daughter (1 year, 4 months today!) has HFI. She has not been able to tolerate any foods except meat, eggs, cornstarch and tapioca starch.

I saw your post here
hfiinfo.proboards.com/index.cgi?action=display&board=ingredients&thread=1310&page=1
where you mention that Carlitos didn't tolerate white rice. My daughter didn't tolerate it either. I cooked it in by letting the water absorb into it, instead of boiling and draining, so I may not have drained off the fructose as much as I could have. But I am a little scared to try it again on her, as it made her sick for a few days. Can you tell me - can Carlitos have rice now?

what foods does he tolerate? If your son is so sensitive that he can't have rice, then maybe he is similar to my dd and maybe what Carlitos tolerates is a good place for me to start for DD?

Thanks a lot. I am so encouraged to hear that Carlitos is doing well! it gives me hope!
Nicole

[claudiarivas]

Hello Nicoleh

When I started giving him white rice, apparently his digestive system was still very sensitive and he threw up two hour after having it.
But no other HFI symptoms appeared, so thats, why I believe his reaction was more of a digestive issue than HFI.... When Carlitos gets a HFI reaction he gets really lethargic and vomits.
Now he eats white rice perfectly fine, no reaction.
Carlitos eats all his food with just a little salt and sometimes a bit of olive oil. His food is either, sauteed in a pan, boil or grilled
He eats
Breakfast
Grits
cream of wheat
Pancakes Bisquick brand ( the small package, the large one has sugar, here where I live)
Natural Yoghurt
Wheat Puffs
Oatmeal
Milk: Similac go and grow ( blue and white package)
" water" Bread or french baguette
Cheese
Turkey ham " buttermilk" oven roasted
eggs

Lunch / Dinner
Potatoes
tapioca
turkey
chicken
spinach
mushrooms
pasta
ricotta cheese
salmon
fish
veal
white rice
Tuna fillet
White tortilla with ham and cheese

Snacks
Saltine crackers
pretzels sticks
potatoes chips
occasional pop corn

You can reach out to me whenever you want!
I hope this helps.

my email is [e-mail]

Take care,
Claudia R

[nicoleh]

Thanks, that's really helpful to know.
I'd never thought of tuna - she has other fish, but that would be different. and veal too. I didn't know white tortillas were ok - bonus! we like them, I'll try them soon.

She just did really badly with cream last week, but we now think that it was contaminated with a virus as other family members got sick too. Once she's finally over the diarrhoea from that, we'll have a crack at some more of these foods.

Thanks a lot,
Nicole

[charlie]

Check ingredients for tortilla as in England they are not hfi safe at least not ant I have seen.

Claudia great to hear little Carlitos is doing so well, well done. You are a great advert for someone who has come on this board desparate for answers, used the info wisely, worked with the medical profession and come out the other side........

[ukbill]

its good the hear of a successful outcome.

Well done with the diet too that looks a good one with plenty of variety in it.

Hugs for you both.

[ukbill]

I second Charlie on that.. they all have HFCS added for no good reason!

However we seem to be following our cousins over the water in this dangerous stuff is being put in all our foods now. some food manufacturers are a little more savvy and are putting Dextrose instead.. I bought some Cheese and onion (flavour) chips (chips) which used to use Lactose to stick the flavouring to the fried potato slices.

These days because of "lactose intolerance" they have swapped this for sucrose or dextrose

These premium quality snacks said they had only dextrose in the flavouring so I bought a 6x pack they were far too sweet to be eaten.. and seemed to make my teeth feel dry and rough instantly.

I can only assume the machine mixing the ingredients went wrong, or the person formulating the flavouring mix.. I will have to call the manufacturer when I get 5 min.

[colormist]

In the states, we have soft flour tortillas located in both the refrigerated section (near the cheese/dairy) and in the dry goods section (near salsa and ethnic foods). All the tortillas in the refrigerated section have fructose. Only some of the dry goods tortillas have fructose. Since you're in AUS, you might not have so very many tortillas in your grocery, but if you do, definitely check both sections.

[nicoleh]

well I make my own with masa flour and water - nothing else. I'm not sure if she'll tolerate the masa flour?

[jejns1]

I can get safe flat Tortilla's in London, Ontario. They are made by Dempster's and are the only
safe ones I have found. The kids love tacos made with Presidents Choice Blue Menu Taco seasoning (I by 10 packs at a time when I can find it) and hamburger. With Mexican shredded cheese and sour cream, no veggies, they quite like them and can be taken to school cold for a good lunch.

[claudiarivas]

Hello to all..
about tortillas, I am in Dominican Republic so maybe it is different here, but I have found several brands of white tortilla, when the ingredients have no sugar no dextrose nothing....
They are not frozen.

Carlos have had them several times and has no reaction.
Thanks though for the feedback , is good to know when I am in the states, to be aware.

take care

[lucky]

Hello Claudia,
So wonderful to hear how well Carlitos is doing.
Enjoy the precious moments of raising a happy, healthy bundle of joy.

Ukbill,
Thank-you for the info posted on potato chips (crisps).
Very interesting learning another reason why dextrose, maltodextrin, or sugar is often added to those products. I've always wondered, but I would have NEVER guessed the lactose connection. Makes sense.

Jejns,
You made my day!!!!
Thank-you for the info on the taco seasoning. Sooo helpful!! --I'm off to look for it. But one question: What is Mexican cheese? Is it just a pre-shredded package of mixed cheeses?

Cheers

[jejns1]

Yes, the Kraft or President's Choice Mexican shredded cheese is usually what we buy. This is so easy and the kids wolf it down. Keeping an active 14 year old boy with HFI full, and a picky 13 year old girl with HFI happy, can be a challenge!

[ukbill]

Trust me normal kids is a big enough challenge!

I bow to you with respect.



IF in doubt throw a steak or two in the pan and fry a couple of eggs.. that will fill them up and give them plenty of energy.

[jejns1]

Thank you, Bill.
If they would stop sneaking things here and there, it would be perfect. The sweet aversion is not there yet but getting better.

[ukbill]

That 2 is part of growing up I think.

Its a form of rebellion and natural at their age.

"I am not supposed to do this so I" will type of thing..

They will get the message eventually

Have you tried making pastry with added cheese and yeast extract baked in?

For snacks try making cheese straws, and samosas stuffed with cheese, cheese and mushrooms, spicy chicken and mince meat (ground meat) etc.

I also make pastry cut with a cookie stamp coated with yeast extract and baked. which are really nice!

I make twists and straws the same as with cheese but with yeast extract as well or just by its self.

The list is really endless, nearly every thing that can be made sweet can with a little ingenuity be made sweet free.

enjoy

[nicoleh]

what about making them things with stevia? would that help? (correct me if stevia is not ok). I've been using just a tiny amount and it helps me get through without feeling desperate for some cake.

[ukbill]

No Stevia is not OK sorry.

If you personally as a nursing mother, need something safe and sweet then use Dextrose (not Glucose its too contaminated with Fructose) in your cooking.

Then you should be 100% safe from any Fructose finding its way through your milk to baby / child.

Assuming Dextrose is Fructose free. I am yet to find the manufacturing method for Fructose or the patents for its manufacture.

So I am unable to find out its actual Fructose load. certainly its a lot lower than Glucose as seen by the positive reactions of HFI people who became addicted to Glucose which was contaminated and was killing them, after they switched to Dextrose.

HOpe this helps?

[lucky]

I'm not sure if this is helpful, but a US company called "NOW Foods" is a source for Dextrose.

Four years ago, we asked a local pharmacist (chemist) to source out a medical grade product that would be considered HFI safe and pure from contaminants. Deciding on whether or not to introduce artificial or alternative sweeteners is a personal choice, but I believe this product is a safe and viable alternative for those that are interested.

In the case of a nursing parent needing to eat safely for an infant with fructose issues, or a child (fructose sensitive or intolerant) without an overall classic aversion to "sweets", this may help alleviate poor food choices or occasional cheating.

But... as with anything offered on this site, use this (and other info) as a platform for further investigation and/or consult with doctors to confirm if it is right for yourself or your child.

I believe it is pure.

NOW FOODS
Dextrose :: 2lb bag (32oz. / 907g) = $5.50
www.nowfoods.com/Foods/Real-Food/Products/Dextrose-2lb.htm