susan
Full Member
CONFIRMED HFI
Posts: 114
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Post by susan on Sept 30, 2012 10:06:54 GMT -5
Even after 10 + years of higher education and several licensures to practice psycho therapy.........I have NEVER considered this sick feeling I get from tasting sweets or sweet flavors.......as a "learned response."
Now the negative associations or sentiment I developed about Birthday Parties, Easter Parties, or Christmas Parties or other social events involving sweets......I clearly would consider a learned response.
Interesting.
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shan
New Member
Mom to HFI son. Daughter to HFI mom.
Posts: 16
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Post by shan on Sept 30, 2012 18:11:25 GMT -5
I'd say your reaction to sweet is the antithesis of a learned response! What you and all the other people I know with HFI have is little short of a remarkable 6th sense. William my son, my mom and my aunt all saved their own lives with their self regulation. Only my uncle 'ploughed on through' and for most of his married life ate the same food as the rest of his family. He's dead - after years of illness and fragility- no one could ever seem to help him feel better. Only in the later years when he got a positive diagnosis did he start to modify his diet but I think by then the damage was done. Like many, I started noticing problems with food when I started weaning my son - I got very adept at dodging the vomit - but even at that age he was showing true signs of intolerance. I remember giving him a piece of banana to hold. Any other baby would have given it an experimental chew at least. Not Will, he gave me a quizzical look and quite deliberately threw it over his shoulder! (however, give him a lamb bone to chew on and he was like a dog with a - erm..bone. Other people's pity at the thought of 'missing out' is something to try and avoid. It dilutes this gift that you HFIers have. For Will we always tried to create celebrations that don't centre around food - We'd go out and DO something, like ride a steam train. And he ALWAYS has candles to blow out - even if they're stuck into a cardboard cake under which is hiding a special toy. I wanted him to feel proud of what he is - for him to realise that it was HIM who told me through his actions (and vomit!) what was going on. By the time he went to school he was confidently able to tell anyone who asked that fruit is poison. Nowadays, we have more traditional celebrations as we're pretty good at providing something tasty, wholesome and appetising for everyone. Yes, he's taken to one or two 'safe sweet' options -mainly Frusano chocolate and diluted Sprite - but I didn't even entertain the thought of encouraging him to try and 'override' his instincts until he was old enough to understand the science behind it...and even now, the savoury always comes first with him - a fact I celebrate everyday
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Post by Tammy on Oct 1, 2012 1:55:21 GMT -5
Liking or not liking sweet tastes and/or fruit tastes is not something learned. When my daughter was first DX'd, I kept everything unsafe away from her. As she got older, she developed her own tastes and dislikes. She does not like fruit tastes. Not even pixie stix, which is basically pure dextrose. Give her sugar-free chocolate, and she is in her glory.
She didn't have either fruit or sweet. She likes one and dislikes the other. She didn't "learn" this.
Even as a baby before we knew she was HFI, she hated her applesause but loved sweet. Again, not something she learned.
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Post by ukbill on Oct 2, 2012 17:21:17 GMT -5
Sorry to disagree Tammy, this is a very well researched and totally proven area of physiology. Many things are learned in the first few days of life and maybe while still in the womb. All "aversions" are learned things like not putting you fingers in the fire twice. There are a lot of books on the subject going back 60 odd years. Where the HFI side comes into it is in whether the first sugar sweet flavors tasted are Glucose in which case an protective aversion will not develop, or Sucrose / Fructose when it will. I would bet that Regina had a formula milk which was glucose based? So she never learned in that first so important taste of a new food to associated Sugar sweet taste with being ill, but when she came across apple then she had a clear reaction and learned quickly that this was bad stuff. So yes it was learned. When my mother first weaned me the first bottle of milk (cows milk with added sugar as was normal in those days) I drank the first bottle no problem.. but refused every time thereafter. I had not had any fruit or other sweet flavours before that bottle.. now if that first bottle had glucose in it instead of sucrose, or if I had been given a glucose type sweet before that bottle.. I might not me here now! It really is that close and important. I am not surprised that some if not most HFI children have no natural aversion to sweet flavours for this reason. The level of fructose we can tolerate in our diet before we throw up is also very variable for the same reason.. I had sometimes to eat food in which baked beans were added.. it was eat or go hungry.. so I ate as much as I could before I was feeling too ill to eat more. As a result of this I could eat more fructose containing foods than I should have done. This was true until only about 3 years ago when I realised finally that "Tolerated" is not the same as "safe" when it comes to HFI. I used to believe I could "balance" out a meal and if one part was a little sweet I could eat more plain boiled rice or eat more bread to stop feeling ill from the meal.. This I now know to be bad. really bad. Simply put, the less Fructose I eat the better I both feel and am, in body and soul so to speak. The less Fructose in my diet the less I can now tolerate. There is no way I could now eat a meal that I would have considered fine only 3 years ago! Please bear in mind for the first 8 years of my life, we did not have much money and food was frequently scarce although we did not starve you could not have called us over fed. I really did not start to get a better diet until I started cooking for myself at 14 / 15 years old at which time I was 2nd smallest in my class at school.. both in height and weight., being around 4'2" and much less than 6 stone if I remember right. At 16 I was 6'2" and 8 stone / 128Lbs / 58 KG and by far the tallest pupil in the school! Skinny?? Oh yes but at least I had grown.. These days a little too much.. around the middle
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susan
Full Member
CONFIRMED HFI
Posts: 114
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Post by susan on Oct 2, 2012 17:42:09 GMT -5
HMMMMMMM........Still thinking.
I always thought it was as if someone gets some tainted food,,,,, botulism or something.......and a person throws it up.
So if I accidentally get a food with too much sugar....I throw it up.
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Post by ukbill on Oct 2, 2012 18:16:35 GMT -5
The throwing up reaction is your body reacting to something that is poisoning it.. yes like botulism.. when we get a reaction it is just that plain and simple poisoning!
It certainly feels like it to me, so if the body realises that yet more of this poison is coming from the food in the stomach .. up it comes!
For the Pavlovian reaction however I will throw up just as quick if I drank diet coke as much as full fat coke, because I have not un-learned that sweet flavours can = good
Because to me sweet = poison
This is a very useful safety "skill" which has protected me so very very many times from eating or drinking something sweet.
To be honest there is little chance I will drink diet coke anyway because its really horrible tasting stuff to me.
I would rather drink battery acid.
In fact thinking about it I have drunk Sulfuric, Nitric and Hydrochloric acids (more dilute than the stuff than would be in a car battery to be honest), and I can confirm yes it is far nicer to drink than coke, full fat or diet.
I was trained as a Chemical Technician and it was something we were shown how to do.. strange but true.
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Post by Tammy on Oct 2, 2012 18:44:39 GMT -5
Well Bill looks like we don't agree again. Imagine that lol. I will say that it CAN be a learned response but sometimes its not. First thing wrong in your idea is that Regina was breastfed. She wasn't on any formula until she was older. The first thing sweet she ate was probably a cookie or maybe soft cake or cereal. Either case would have been sucrose. By your theory she shouldn't like it then. Fruit tastes. She has never liked them and there is no reason for her not to. She never had any adverse reactions to eating. Not until AFTER she was fructose free. Her only symptom was an enlarged liver. She was in danger of liver failure which is why they kept looking until they found HFI.
I use Regina as an example because she isnt the same as most of the rest on here. She's the proof that mot all confirmed HFI people fit into your neat little box. Every case is different and each different case has to be handled independantly. Parents of these kids need to know this. They need to figure out what works best for their case. They need guidence and ALL the options to choose from. Not just your opinions on what you think is best.
Sometimes your way is best. Sometimes its not. That is what all parents need - their options and safe choices to make the best decisions for their needs.
I don't know why Regina didn't like fruit tastes but I'm glad she didn't or I probably would have filled her up on fruit along with all her sweets.
I think some things just can't always be explained. Sometimes they can but then you always have those few things that just wont fit in that dang box.....
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Post by charlie on Oct 3, 2012 10:56:45 GMT -5
I'll chip in here, I don't think this Pavlovian theory is ideal and could end up misleading if read by new people - then you will have people jumping up and down critisising misleading info on here.................... God Forbid................... I see even Colormist has gone Pavlovian now.................... on her blog..................... so we need to think this through carefully. Originally Pavlov developed this theory by making dogs salivate when a bell was rung but through continual conditioning over a period of time. So it is a conditioned response built up in response to a certain stimulus over time. The problem with HFI is some, like his lordship, can sense the minutist bit of fructose and thick yuk........... I don't want that. Others can't, they get the response later down the line. sometimes they will vomit, sometimes major gas, others they just feel a bit woozy. But as I have said before unless it is alot of fructose it is not instant and that is what a pavlovian response would be. In their mind over a long period of time they may finally realise if I eat X I feel Y or Z but kids are not going to do that. Most "good" articles speak of a natural aversion and that is a much more sensible way of describing it. I feel down the line if we continue on with this pavlovian theory people are going to think, well I ate that and nothing happened................ then 2 days later................. whoosh..................... But some don't have a complete natural aversion and that, as Tammy has said many a times needs careful handling, education and safe levels found, for peace of mind and long term health. A pavlova on the other hand is a very sweet meringue pudding which is delicious for non-HFI'ers................... ;D Sorry to debase the conversation.................
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susan
Full Member
CONFIRMED HFI
Posts: 114
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Post by susan on Oct 3, 2012 18:19:22 GMT -5
I still wish there was more research....as I always say.
I regard my reactions as my body recognizing poison and having survival reactions......vomiting. Not a learned response.
And.......My taste buds are programmed to not like the taste of anything sweet. Just like some people like carrots some do not. Some people like broccoli and some do not. Some like venison and some do not. (Too wild or gamey, for my taste).
There are so many genetics variations of HFI. I would like a study trying to understand which symptoms are associated with which genetic variations.
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Post by charlie on Oct 4, 2012 8:23:57 GMT -5
I think, and Tammy has mentioned it too, maybe the genetic variations play a big part in this. I suppose one day when more have been positively diagnosed a better picture of this may show up. It does seem to be being diagnosed much more quickly now or maybe more using the internet for knowledge now so people are coming out of the woodwork. Then you can get info from everyone about the mutations found and their personal tastes and tolerances.
Maybe there is a dissertation idea in there for any of our guests studying medicine or nutrition..................
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Mimi
New Member
Posts: 24
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Post by Mimi on Oct 4, 2012 9:20:23 GMT -5
Maybe there is a dissertation idea in there for any of our guests studying medicine or nutrition. To me, this is one of the most fascinating questions about HFI: Why do some of us have the taste aversion to sweets and some do not? Is it learned or inborn/genetic? We know there are genetic variations among us. Is that the answer? Or is it the repeated nausea and vomiting that puts us off the substance we ingested a few minutes or hours earlier? I do think that everyone has a "sweet tooth" to some degree. It is an instinct that helped early humans survive. But for most HFI people, the sweet tooth is satisfied by the tiniest imaginable amounts of sweetness. After a big heavy meal, I might enjoy a very tiny dab of vanilla ice cream or a very tiny bit of dark chocolate. I do mean tiny-- an amount almost too small to see. That bite might taste pretty good, but if I took a second bite, it would not. Overall, this is not a good idea. Better to save the sweet tooth for a couple of bites of green vegetable with the meal or some lemon juice on the fish or in the tea. Because of that "sweet tooth," it is not surprising that children would try something sweet and maybe like the first taste. This is complicated ...
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Post by colormist on Oct 5, 2012 11:45:20 GMT -5
Just chipping in a bit of my thoughts on pavlov & HFI. When I refer to a pavlov reaction, I'm referring to getting nauseated from being around sugary food (I'll have to double-check to make sure) or from eating something that shouldn't molecularly induce a reaction, but I've come (after 30-odd years) to associate super-sugary-sweet foods & smells with nausea.
I also think this pavlov-reaction might not be as prevalent with children who were diagnosed early in life. There wasn't near as much trial-and-error involved with a child that has a parent that knows SOMETHING about what they can and can't eat. I was still trying to eat bananas and apple juice at the age of 20 and by the age of 25 was introducing all kinds of new vegetables and fruit into my diet. I was still eating sweet things and didn't associate them with my illness. I did, however, know and associate cakes, ice cream, soda pop, cookies and other super-sweet desserts with my illness. I knew that I didn't like sweets and the higher concentration of sugar = higher likelihood of feeling ill.
Of course, I'm one of those people who grew up eating all those yummy wonka dextrose candies. I still crave them. I don't think I'll ever forget tart 'n tinies. *sniff*
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