new to board

[hfimomof3]

Hello there everyone,

I can't believe I finally found an active HFI message board! I have never met a single person in real life who is HFI. I am so very excited to have found you all. The older I have gotten, the more severe my diet restrictions have become, and it has been so very lonely to go through this on my own.

I will tell you a little about myself. I am in my forties. I have known about my HFI for most of my life. My parents were really good about it though they didn't know that certain foods were high in sugar. I ate a lot of carrots and tomatoes as a kid, not knowing any better. My diet as an adult is strict but it seems every year I lose another set of foods as they seem sweeter than they did the year before.

Recently, one of my kids was diagnosed with food allergies. He is allergic to dairy. I told my husband I can't eat half the food in the world and he's allergic to the other half! This has created a dietary problem for me since I'm still breastfeeding (usually nursing moms are told to avoid any foods that their kids are avoiding). We are working on weaning but he has so few foods that I'm afraid he will stop thriving once he no longer has access to my milk.

I feel that HFI is an underserved condition. I understand that it is very rare, so there is no public impetus to understand it. However, a small amount of information, requiring a minimum level of research dollars, would really help us HFI sufferers out. When I was pregnant, I was put onto a prenatal vitamin that had no vitamin A. I get no vitamin A from my diet because red and yellow vegetables are not permitted for me. The brand of vitamin was the same as one I had previously taken that DID have vitamin A, yet the nutritionist never flagged it. She just didnt' know enough about HFI to be aware that my dietary issues were bigger than just "take a multivitamin". This is the kind of situation that a minimum of research and policy statements could fix, I think.

Anyway, that is my novel. I'm going to go read a bunch of threads now!

[evelyn]

Hi! I'm new here too, I don't know if I have HFI or have FM but I'm very sensitive to fructose and am in the process of being tested.
Welcome!

[Tammy]

Hi and welcome. It's always nice to hear from new members.
What part of the world are you in? We have people from all over on here. It's nice to know because the same foods are different in different parts of not only the world, but even from the states and Canada.

We're here to help if we can, but also to look for any good, new ideas you may have, also.
Welcome.

[hfimomof3]

Thank you. I am living in the USA but originally I am from the tropics. Where I grew up, the sugar content of foods was much lower than it is here. I limit myself to 1 gram of sugar per serving or less (based on the nutrition label). I could eat Weetabix there (about 0.25 grams of sugar per serving, made in the middle east), and here the Weetabix is too sweet for me (2 grams per serving). There, I can eat all the locally made pastas. Here, I only eat Barilla brand pasta which seems to be one of the more expensive brands.

Everything here seems to boast that it is sweet. Even things that tout themselves as free of HFCS contain some other sugar substitute. I typically avoid sugar substitutes, even if they are technically permissible for me, because years ago I got fooled with some "sugar-free" candy that actually contained sorbitol (back then, I didn't know that sorbital was a problem for HFI). That was not fun. I don't particularly like the taste of sweet things, so I'm not really interested in sugar substitutes anyway. Also, diabetes runs in my family so I try to stick to complex carbohydrates for my carb intake.

[jen]

Same here.. Glad to see a message board. I'm a new member. Grew up in the Netherlands and been living here (USA) for 9 years. And the last 9 years have been hard. I love living here but eating here is a big challenge. I never read so many food labels in my life. Luckily I am born with a dislike of almost everything containing fructose. In the Netherlands they use less fructose and I was lucky enough to live near all the little stores (butcher, baker, candlestick maker). And the food laws over there are very strict. This message board has been a revelation. Since I have been living here I gained a bunch and start having health problems I never had before. Although I thought I was doing ok with my diet, I am going to take a closer look at everything I have been eating.

[anastazya]

Hi...welcome. I'm in the process of being diagnosed as well. But I seem to be HFI. I posted my life story on another discussion, so I won't repeat it, but I'm glad we are here for each other!

[meaniejean]

Welcome, welcome, welcome to our new members. It's so exciting that others are finding their way here. This board has changed my life! I hope participating here does great things for you all too!

[julienc]

Welcome to all the new members! This board has been a huge help to me over the years. It's nice to find others who struggle with the same things.

I have shared this story on here before...but I'll do it again. My dh and I traveled through Europe for 7 weeks (years ago, before my diagnosis). I was so worried about the food situation, since so much of what I ate here in the US made me sick. I never felt better during those 7 weeks. In hindsight, it's obvious that Europeans just don't put sugar/fructose in things like they do here in the US. It is frustrating, indeed.

Anyway, I hope you all can find some useful information here.

[charlie]

One food programme here recently said fast food is so high in sugar and MSG because it makes the body crave more, maybe that is why the US use more?

I'll add my welcome to the new members too, as the others have said, it is a life and sanity saver!!

Do feel free to ask questions, no matter how silly or insignificant they may seem. You just never know

[ukbill]

Welcome from me as well in the UK to all new members.

Loads of Vitamin A is in Liver so eat liver = no vitamin A (or B) problems.

although I am finding my diet is more restricted as I get older its because I'm still "fine Tuning" it and removing things that contain sucrose / fructose and finding my life a whole lot happier for it!

I just have to be more inventive with my recipes and cooking (not a problem).

Take care.

[ukbill]

All New varieties of foods seem to be all sweeter than the last I find OLD varieties are the best.. (potatoes for example)

[kim55]

Hi, I am new to this board too. I am 55 years old and have always had a problem with sugar; about 10 years ago I came across a description of HFI and realized every symptom fit me perfectly. I have never been officially diagnosed because my doctor said he could not understand why I wanted to have such an invasive test (the only one available at that time) and then after quizzing me about it in detail, said "You understand this better than I thought." (Duh! I'd only been living with it for 40+ years.) Other doctors have also been totally unhelpful, so I just treat it as a "given" that I have HFI and I read a lot of food labels and interrogate a lot of waiters and cooks, and I complain when a fast food outlet gives me sweet tea instead of the "unsweet" I ordered. My daughter recently moved to college and she commented that she never realized how much sugar people put in foods, because we have always cooked without added sugar except for desserts and fruit dishes (which I just don't eat). Anyway, my food issues have been causing me some problems lately, mostly because I am trying to lose weight, so I am looking forward to reading what others have to say.

[anastazya]

Welcome...I'm rather new here too. And I also am having a hard time getting tested for HFI. I was put on a low sugar diet at 2 and at 4 I told my Mom I wasn't going to eat sweets because they made me sick. I cant tell you how many times I got sick or threw up after a holiday, at birthday parties, or just not eating right while growing up.

However, I seem to have a problem with glucose. Which is strange, but just one more mystery.

Good luck with your weight loss and I'm sure this board will be helpful...it has been for me. : )

[ukbill]

Not a mystery about Glucose at all!

The Glucose for sale in the shops (non medical grade) will likely have at least 4% sucrose in it because its made from a base product (Sweet Corn) which has at least 4% sugar in the Germ of the "nib" this is not removed in the processing.

Also depending on the manufacturing method it can contain up to 40% "other sugars" in a product which can legally be called 100% pure Glucose.

Add to that the fact its manufactured in the same factory, in the same reacting vessels, sent through the same pipes and packaged in the same equipment as High Fructose Corn Syrup and "pure" Fructose itself!

So No I'm not surprised at all.

[anastazya]

Well, that makes total sense to me! Will be talking to my Doctor TODAY about getting tested for HFI. Let's see what happens...hopefully he'll listen this time!

[ukbill]

Deb C has sent me a link to a form of Dextrose she finds safe.. however its still made form Sweet Corn so how it ends up safe I have no idea I presume they take Maize flour (de-hulled and with Germ removed) to use in their process.

I would also expect it to be made in equipment which is wholly for the one product only.

I did not ask her if the link was to the version she buys but I expect it is.

Deb C she needs to take dextrose because her situation is different, thank goodness, to most HFI as she seems to be Supper Fructose Intolerant and is not able to tolerate even the smallest amount of Fructose.

For the rest of us HFI's I still think its best not to go there and leave refined sugars and sweeteners for those who can tolerate them.

I look forward to hearing how your doctors appointment went.

Keep smiling.

[Canadian family]

UK Bill, we are long time readers and first time responders. From reading your posts we believe you might be able to help us... Two years ago, our 9 year old son was diagnosed with HFI. Over the past two years we have be reducing his Fructose intake to near zero and unfortunately it limits his food choices. He will eat toasted sugar free bread with butter, grilled cheddar cheese sandwiches, white rice and chicken or beef (seasoned only with salt and pepper). He does not eat fruit or vegetables and we would like to know if you have any fructose-free meal suggestions a 9 year old would like? Can someone live on protein and fat alone?

[charlie]

Hi Canadian family welcome officially to the board. Try the recipes and safe ingredient sections for some ideas but my just 8 year old daughter has been on fructose free diet and lives pretty well off a protein and carefully selected carb meal. i'm lucky she isn't too fussy an eater and is quite happy to eat the same thing 2 days in a row.

To keep her as balanced as possible at school i now deliver hot meals to them at lunch time for her as packed lunches were impossible to make palatable and sustaining meals, we are fortunate to live 5 minutes drive from the school. I use a thermos pot which keeps it hot for long enough, I find if I send a hot meal in at the beginning of school it has gone congealed and lumpy by the time she eats.

i tend to slow casserole her meats by flash frying the meat till brown then put in a slow casserole with water and a pinch of herbs. 4 hours later you have lovely melt in the mouth meat and a tasty stock which i thicken with potato or cornflour. She then has these with white rice or old potatoes.

shepherds pie and spaghetti bolognese I do by frying mince then covering with boiling water or homemade beef stock ( our butcher give me great bones or oxtail to make it). I then simmer the mince with herbs for at least 40 mins again to get a good flavour. I then decant the mince and some of the stock into a dish and cover with mashed potato and butter. or plonk a spoonful ontop of spagetti. The rest of the stock you can use for gravy.

If you have access to good quality meat from a farm you will find you get masses of flavour from it you can use for sauces. skirt of beef is great for casseroles.

In reply to your last question, well she is one of the tallest in her class, yes she does go down with every bug going and possibly has epilipsy as part of this or something completely differently but I would say though she can live perfectly well on this diet. She recently had nutritional analysis blood tests and all levels were normal.

we have it so drummed into us that you must eat your fruit and veg up but to be honest if you use good quality food the diet can still be healthy.

Oh, chicken nugget recipe:
use raw chicken fillets and cut into small strips. Use 3 bowls
1st has cornflour or plain flour in it
2nd has beaten egg
3rd has breadcrumbs made from your safe bread.

dip the chicken into the bowls in that order and deep fry for 5 mins on high, time varies on size of chunks. Its very messy on your fingers but they love them. You can add herbs, pinch of salt or pepper to flour to taste. You can use the same format with minced pork of fish chunks.

I home make fries / chips with potatoes cut into strips to suit, dry them in a tea towel then deep fry in hot oil. In britain maris piper potatoes make the best chips, There is an art to getting them just right but you soon get the hang of it. Careful with frozen chips - they dip them in sugar solution before freezing to get the crispy effect!!!

so as not to overbog you with info I will shut up now and go and make another pot of casserole!!!

Good luck, keep posting. if you join, its free and you can send private messages to us too. If you send me your email I can send you our list of safe ingredients.

Charlie

[Canadian family]

Charlie, Thank you very much for the detailed information. We were very happy to find this board and look forward to continuing reading the posts. We will continue to experiment and will try your recipe. Have a great day and thanks again!!!

[ukbill]

Charlie good to hear your fantastic resipies.. I wish my mum had been so inventive when I was at school.. I always came home for lunch except whe I went to high school, then I went to a local cafe and had beef burger and chips or egg and chips.. been as they were not a "chain" cafe the food was good for me and I had no problem there.

Have you tried Dumpling in the stew? They are fantastic..

As a child I also had dumplings cooked in milk in a pressure cooker.. they were to die for, so light and fluffy and melt in the mouth.. I will have to get a pressure cooker just to make some more now I remember how good they were.