Twins with HFI need updated food list.

[tez]

Hi I am a twin who has had HFI my entire life. My twin sister has it as well, but we both have very different tastes, I would like to lose 5 kilos and every diet says eat FRUIT !!!.

Where I live in Australia no one has any idea what HFI is. I went to a hospital and they gave me a diabetic meal, which included deli meats, fruit and orange juice.
The nurses looked at me as if I was just being a pain when I said I was unable to eat any of the food brought to me, because they belived that no sugar allowed ment I was a diabetic.

I was just wondering if anyone else with HFI in Australia can give me any links to dietitians that will take me and my sister seriously.

I have seen one diatition and she suggested I would be able to eat strawberries and nutrasweet items... I didn't eat them of course because I was unable to get past the sweet smell.

If anyone has any ideas please let me know. The only diet list I have is since 1979 and is so dated half of the foods are no longer on the market.

Thank You

[colormist]

I'm having similar issues, Tez. I'm also looking to lose weight, but there's not much out there in the way of diet HFI food. Currently I'm cycling through non-fat plain yogurt, pasta salad (pasta, olives, low-fat pepperoni, mozzarella, red wine vinegar), and I make white rice but use chicken broth (or chicken noodle soup) instead of water--which makes it slightly more tasty than plain rice.

Spinach is yummy for salads, too.

[julienc]

Hi Tez!

Welcome to the board!!

I think it is virtually impossible for HFI'ers to diet, at least in the traditional sense.

I have been trying to lose my last 5 lbs of baby weight without much success. (I just had a baby this past October.) Normally I still eat all the same foods but try to eat less quantity. Oh yeah, and hold off of the french fries - my ultimate weakness.

So, are you and your sister identical twins? How exciting - I don't think we've had twin HFI'ers here before. I recall someone on here from Australia, though.

[lisa]

For those trying to diet, you may want to look into Susanne Somers and Somersizing. It is mostly about food combining and essentially trying to separate carbs from proteins/fats to aid in digestion, etc. Somersizing is heavy into removing sugar from your diet and goes into eliminating certain veggies that are high in sugar content. Certainly, you would have to eliminate the fruits and restrict more of the veggies that are allowed...

Anyway, most libraries have copies of her books. If you do check into it, let me know what you think.

[charlie]

I tried a food combining diet with Megs early on as I have done it myself and found it fantastic, the problem with HFI and this diet is what do you add to the food as you rely on the vegetable group to bulk out the food and if you are very intolerant as Megs is you cannot have any veg at all.

A friend commented the other day that her diet sounds along the lines of the Atkins Diet, haven't read it myself but may be something in it.

Laura, either you have computer enhanced your piccy or you so do not need to lose weight.

[colormist]

Charlie, my pic is from my wedding, four years ago. I've started noticing the decreased metabolism, so just trying to adjust my food intake so I don't have to worry about exercising like a fiend.

I tried Adkins a couple years ago. It was great for losing weight quick, but boy do you ever put it back on and then some if you ever go off it. This is part of the reason why I'm dieting/exercising. I think I lost 5lbs but I gained 10lbs all within a year.

South Beach is more of a less-restrict diet, so that might be a better option. Or, better yet, just eat whole-wheat pasta and brown rice instead of the refined stuff and stop eating snacks.

[charlie]

I suppose exercising is hard as well if you have hypoglycemic episodes.

Yes, not so good if you put it back on quickly, isn't wholewheat and brown rice a no no due to higher fructose or can you balance that out with other limits. That is one of the problems with the HFI diet, high carbo content due to so many other restrictions.

[colormist]

I don't have an issue with brown rice and whole wheat, but some are more sensitive than others. It just depends on what your body can handle/filter out.

[tez]

HI Everyone, thankyou for all your replies, I will respond to my pm's over the next few days.

Julienc -- no we are not identical, in anyway, most people think we are cousins at best, but my other two sisters carry the HFI gene, so perhaps it may turn up in the family in years to come, we are unsure where it started.

I have a weakness of dairy foods, ricotta and feta cheeses mostly, I guess its like chocolate cravings for everyone who isn't HFI intolerant.
Does anyone else have these kind of cravings??

Thanks again for the suggestions, see you all soon

[julienc]

Apr 5, 2009 6:15:12 GMT -5 tez said:

I have a weakness of dairy foods, ricotta and feta cheeses mostly, I guess its like chocolate cravings for everyone who isn't HFI intolerant.
Does anyone else have these kind of cravings??

Thanks again for the suggestions, see you all soon

Mmmmmm....feta. Yes I do crave all kinds of dairy foods. I eat lots of low-fat cottage cheese, which I *think* is relatively healthy. I also keep mozzarella cheese sticks on hand for my morning snack at work.

[meaniejean]

mmmm .... cheese ....

[charlie]

Megans craving seems to be tins of mackeral, she did do cheese but seems to have gone off that judging by the amount of cheese strips and babybels left in the fridge. These used to be great for pretend sweets but don't seem to do the trick. Now its just smelly fish, but at least its good for her. she has mackeral with spaghetti, potato, noodles, sandwiches and oh today on its own straight out of the tin because she couldn't wait.

[margy]

Hi tez, I am not sure what state you are in. If its Victoria then Box Hill Hospital is where Sue Shepherd is located. She is the most experienced in this field. If you are in another state, then log onto Sue Shepherd's web site, and leave a message on the coeliac forum she will get back to you with the name of a fructose experienced dietician. Good luck.

[ukbill]

Charlie, good for Megan! nothing wrong with tinned fish (without tomato sauce.. or soya oil..)

Like Fred I eat loads of cheese but these days feel better on pure meat and rice.

I do loads of sir fry's with bags of mixed seafood (not sea food sticks which contain sugar).

I eat more than my fair share of Steak as well ..mmm steak and eggs with flat mushrooms covered with cheese and a "doorstep" slab of good bread dipped in the meat juices! enough to give a nutritionist a heart attack!

I have had nothing but useless or dangerous advice from "professionals" regarding just about every thing to do with HFI.

Best go with instincts and forget "normal" advice as to diet, let Megan eat her fill of what she wants to eat.

I do not trust the lists of foods as currently available they do not agree with my own experience and sometimes are totally wrong.

Also looking at sugar content of foods in supermarkets.. I am not sure who tests their products or how they are tested.. but I will be finding out over the next few months. there certainly seems to be no consistency in the testing.

I recently saw sweet potatoes being listed in a supermarket with lower sugar content than of a known variety of normal potato which is and has always been safe for me.. there is no way a sweet potato has such a low sugar content as they were saying..

Still looking into Glucose situation.. seems that most that is available is just not pure! I recently saw a packet in a dentist surgery which was only 90% glucose.. what the other 10 % was was not stated.. but the packet claimed it be pure glucose (dextrose) so we have to assume the ingredient is all sugar and the 10% is other sugar types.. unless proven otherwise.

Off to Brisbane in 2 weeks for 5 week rest.. Ha ha! spending almost all the time doing HFI web site.. when not on beach.

Will be producing ultra low Fructose menu and cooking recipes.. trying to sort out video to show how easy it is to cook HFI. so you might get to see my face.. poor you!

Wish me luck..

PS has Megan discovered home made cheese straws or Marmite straws? Great for a treat or to eat while others are eating "cookies" or other sweet tasting Yucky stuff!!

[Deb Mc]

Mar 8, 2010 22:18:48 GMT -5 ukbill said:

Still looking into Glucose situation.. seems that most that is available is just not pure!

Hi, UKbill.

Now Foods offers 100% pure dextrose. My body is pretty much a living geiger counter for all forms of fructose. (e.g. 1/4 a black olive (sucrose) took away use of my hands for 2.5 weeks; ditto an application of lipstick). So I can say w/confidence that Now Dextrose is indeed pure. Besides, one of my docs called and verified it. He spoke to their head food science person. Here's a link.

www.nowfoods.com/Products/ProductsbyCategory/Category/076260.htm?cat=

I recently saw a packet in a dentist surgery which was only 90% glucose.. what the other 10 % was was not stated.. but the packet claimed it be pure glucose (dextrose) so we have to assume the ingredient is all sugar and the 10% is other sugar types.. unless proven otherwise.

Pure dextrose w/ the other percent being what? I get dextrose IVs and in mine the other percent is pure saline. Ditto @ the hospitals we've had our procedureds done at.

I've learned the hard way never to assume anything, or to take someone's word for it, not even the pharmacists'. I always ask to see the insert for all ingredients/products and if they won't oblige or the written information provided does not make it crystal clear *to me*, I pass. In fact, for this reason, I had my liver biopsy done without any sedation or pain meds. That assured I did not get fructosed and I didn't.

Deb Mc

[charlie]

Hi Bill, ooh you lucky thing off to aussie with this british weather at the moment. Have a good time.
Megs ain't a fan of cheese, I have tried cheese straws etc and she hates them, thought maybe it was the wheat so tried gluten free which turned out beautifully amazingly but madam doesn't like them either, so I get to eat the whole lot.

What are your thoughts on marmite - hooray finally found someone on here who knows what it is!!!! had great fun trying to explain it to our american friends last year, he he. Megs loves it and would live on it but I noticed now it lists vegetable extract, I limit her now to the tiniest scrape on her toast once a day as wondered if it was the missing link in the puzzle.

[margy]

Hi All, in Oz we have Glucodin 100% glucose and Glucodin tablets for emergency carrying. I have tried adding this to food but about 30 minutes in I get such a pounding effect in my head I have stopped doing it. Could it be an effect on blood pressure having such a spike in blood sugar? No other side effects.
Margy

[ukbill]

Charlie reading about Megs has made me smile, I still do that now when in desperate need of a blood Glucose lift.

Regarding Dieting its not easy for HFI because our bodies still convert body fat back into both Glucose and Fructose as "normals" do.

So we tend to poison ourselves if we go low enough food intake to start "burning" body fat. Its the same with exercise.

So when I need to drop my weight a little I take it VERY slow!

Best not get too big in the first place! I keep telling myself as I sit down to yet another overloaded plate.

Take care.

[ukbill]

Sorry Charlie just read your last posting Marmite is great stuff as is perversly the Aussi version Vegimite!

Its great to cook with try spreading it on some pastry and then twisting it up like a cheese straw and cooking it!

Childhood birthday treat they were!

I suspect there might be a tiny amount of fructose in Vegimite as it is made from yeast extract and vegetable protein, but its so low and I eat only a very little (its stronger tasting than Marmite) so the effect if there is any is undetectable.

Deb MC
Thanks for that its good to know there is a source of pure Dextrose available.

My research has been via the Patents office looking at patents relating to the manufacture glucose, and information from the sugar manufacturing companies here in the UK, in Australia, NewZealand and of course the USA.

I wish I could be of some help to you with your far more severe HFI condition to mine.

Is there no way a doctor could find a way to give you the missing enzymes via injection or orally?

It would not be worth the effort for us "normal" HFI but in your case its got to be tried surely?

The correct enzymes should be recoverable from any mammals liver (like Cow) I would think.

Its worth the ask anyway?

Keep smiling and I hope your health improves.

Margy that sounds like the effect I get if I do more than taste wine no matter how "dry" and sugar free it is I get the same result, also from alcohol distilled made from high Fructose sugars (grape apple plum etc.) and I know there is no sugar remaining after triple distilling them!

The only alcohol I can safely consume is alcohol made form grains (wheat and barley NOT maize)

So I'm assuming its to do with the shape of the alcohol molecule being different I'll do some more research when I get time.

Regards

Bill A.

[ukbill]

I regulate my food intake by making milk shakes.

I use 50/50 semi skimed milk and home made natural yoghurt (made from semi skimmed milk)
to which I add 1 1/2 teaspoons full of pure Ispaghula husk which is an HFI safe fibre.

It needs whisking for some time to stop the husk collecting in the foam at the top of the milk shake but after about 2 or 3 min its good to drink!

The Ispaghula husk expands greatly in the gut and make me feel like I've had a big meal and lasts for several hours.

You do have to take it with lots of fluids because it expands so much .. if you were to take it semi dry it can cause a blockage by adsorbing all the available fluid and balling up into a big lump.
SO I follow my "Milk Shake " with a mug of tea just to make sure.

So long as I don't go doing anything too strenuous then I'm fine for a few hours.

It also helps keep everything running "smoothly" if you get my drift no more episodes of constipation followed by not being able to go far from the loo for a day or so.. Great!

I was put on it in the form of IsoGel by my doctor, all the other forms contained sweeteners and were really bad! Orange flavour or Banana.. UUUK!

Unfortunately the manufacturer in the UK stopped making the none sweetened version and so I was in difficulty till I went to Australia for the first time. just about every heath food shop sells it over there! Great!

I came back with 12 months supply. Thank goodness I was not stopped at customs with 3 x 750g bags of white powder in my suitcases.. otherwise I'd still be explaining it to them now!

I have since found supplies in the UK available on the internet.

I can send a link if you want?

Keep smiling.