Selective Aversion to Sweets?

[deb]

Hi all,
Just as my usual disclaimer, we still don't have a diagnosis beyond severe FM for our daughter, but we have been noticing in recent months that she has developed a selective aversion to sweets and were wondering about this-- well-- the fact that is is selective, that is!

For example, she tried Lactaid milk the other day, which according to the ingredients looks fine from a fructose perspective, but she nearly spit it out all over the place, made a disgusted face and said "Yuck-way too sweet!" (she is 6). I tasted it and sure it enough it does taste sweeter than regular milk - perhaps because of the lactase enzymes added to it?

But then she will completely devour smarties and home-made cupcakes I make with dextrose with no aversion to the taste at all (quite the opposite!), but certain cheeses (e.g., Babybel) she complains taste too sweet....

Her diet is already so limited - I don't know if we should be concerned about this or happy that she is self-regulating- albeit perhaps a bit too broadly?.... I don't mean to open up the whole "give the sweets or don't debate"-- just looking for some friendly advice! thanks ;-) Deb

[colormist]

I don't like that baybel cheese, either. I didn't connect sweet to it, though. Very interesting.

As for smarties and dextrose, dextrose in general doesn't taste very sweet to me. Or it doesn't taste like the wrong kind of sweet. I'm not sure how to exactly explain it. I bought a bag of pure dextrose to make baked goods (which I found all tasted sweet and disgusting), and the first thing I did with the dextrose was eat it like Lik-m-ade. It had this melting cooling delicious flavor. Sure it tasted sweet, but it was the RIGHT sweet. I had to stop myself from eating more of it. Pixy Stix had the same effect on me (prior to recent fructose-related indiscretions).

It sounds like she's old enough to start regulating her own fructose. I mean, you'll still want to be safe and make all precautions necessary, but it doesn't sound like she's going to be going around eating things she shouldn't be eating. It also sounds like she's opinionated enough to tell other adults when they're trying to feed her something she shouldn't be eating.

Either way, I think this is great news and you should be really happy. She knows that sweet things are bad and can tell when she has safe sweets (and enjoys them). I ate so much dextrose candy as a kid, I'm surprised all my teeth didn't just rot out of my head.

(I can't really comment on Lactaid because I've never had it. It's been my experience that all non-milk milk substitutes are the devil and should be avoided at all costs.)

[Tammy]

I very much agree with this. I'd let her dictate her own diet to her tastes and needs. If she doesn't want something, so be it. If she does, again, as long as you think it's also safe, then she should be able to try it.

I can taste different sweets myself. Not all of them and certainly not as much as the HFI kids who had to teach themselves, but they are different.

Horrah for your daughter if she can tell already!

[ukbill]

Be careful of dextrose it rots teeth like mad!

Also for an HFI its almost like crack cocaine! Very addictive and can mask a very high Fructose load which will still cause organ damage and a general feeling of being unwell unless they take some more.. and feel GREAT for 20 min before crashing again.. etc etc..

[Mimi]

In my case, dextrose candy did not actually cause tooth decay. But it eroded the enamel and ate deep holes into the chewing surfaces of my molars. I had to have them drilled out and filling or bonding material put in to replace the lost tooth area. I had to have it done a couple of times. The dentist thought I was grinding my teeth at night. But after I kicked the SweetTart habit, there has been no more damage.

Yes, they are very addictive.

[flanagan]

I'd say let her self regulate. Encourage her to to try new foods, but if they taste bad to her, then so be it. Trying to get a child to eat something that tastes bad to them sounds like a recipe for a daily migraine. If she does end up being HFI, then she will need your help, not in avoiding sweet foods, but in avoiding those foods that dont taste sweet but contain fructose (or related) all the same.

I'm new here, but just curious, why have you not been able to proceed forward with a diagnois or rule it out?

[deb]

Thanks for the advice everyone - we are encouraging her to avoid those foods that taste sweet but sometimes it seems like things we think are safe she thinks taste off, so that is where the concern comes in from our point of view in terms of trying to keep her healthy and growing - thank you for sharing your experiences-- I always find it so helpful! Interesting colormist that you also don't like that babybel ;-) We haven't had luck with milk substitutes either and thankfully she is not lactose intolerant and guzzles milk-- but she was having what seemed to be a temporary acid reflux issue and the dr suggested lactaid - that's why we were trying it. She is happily back on regular milk now. I do agree that the dextrose - and those smarties/rockets are terrible for teeth--her teeth had started to take on a yellowish cast and we have severely cut down on them. Truth is, now that she is on a much stricter diet, we find we don't really need them anymore as she is not having what we are pretty sure were blood sugar swings. We are trying to reserve the candies for really special occasions and give her homemade treats for other times - with an overall reduction in the dextrose in general. I am happy to hear Mimi that the damaging effects on your teeth were halted when you kicked the sweet tarts! Tammi I also can taste different types of sweet now, although not nearly as well as my daughter or anyone on here I suspect! But this whole experience has raised my awareness tremendously....
Fianagan, the short version of why we don't have a diagnosis is that my daughter recorded their highest "Score" on the fructose breath test (for fructose malabsoprtion) 2 years ago- and was so sensitive that they thought it might be HFI

[deb]

whoops-sorry I hit post before I finished my sentence!Anyhow- she had the gene test and it was negative so they concluded it was not HFI but rather severe FM- but she has continued to have symptoms that go beyond FM (and are more in line with HFI or FBPase deficiency), and so we are still searching for answers...

[sarosh]

Ditto Mimi. My teeth are a mess because of dextrose candy. Once start eating I just can't stop. BTW, does anyone know why it is always tart?

[flanagan]

Deb,
Thanks, I see now. My best wishes to you in finding an accurate diagnosis.

As to dextrose, I had a few cavities when I was young, but haven't had any in about 20 years. While I don't think the dextrose is good for my teeth, it doesn't seem to be rotting them away.

[Tammy]

Interesting about teeth. I wonder if it's not from the dextrose but from all the vomitting as a child? I say this because - as we all know - Regina just loves her dextrose candy and chocolate and she has never had even a single cavity. The only dental work she's had done is from falling and breaking the bottom front ones.

[deb]

Thanks Flanagan. Sarosh I think that makes perfect sense as to why they would use dextrose- must more cost-efficient. Speaking of sweeteners, I just found out the very hard way that caramel colouring can be manufactured to intentionally create a very high fructose end-product. I mistakenly used an artificial vanilla extract with caramel colouring in it on Saturday and my daughter got very, very sick, and is still getting over it. She had maybe 1/8th to 1/4 teaspoon total and I couldn't fathom how she had gotten so sick until I looked this up and realized that one tsp of this, if it was made using this method of manufacturing, would contain about 16 grams of fructose in a single teaspoon! She had immediate stomach cramps and nausea, followed by pain in her big toe. I didn't think caramel coloring was such a biggie, and maybe it isn't always, but if it is manufactured in this particular way can be pretty potent in the fructose department!

[colormist]

Caramel coloring is one of those sneaky jerks like onions and carrots.

[lucky]

Deb,

Thank-you so much for the info on caramel coloring. I haven't used vanilla in the years since discovering our son's fructose issues, but I absolutely had no idea about the fructose content in the caramel coloring!! That's horrible that such a deceptively small ingredient can be so potent in fructose! I wonder why none of my medical info alerted me to it's danger... especially when a parent is scrutinizing every ingredient given to a child. Quite the oversite...

So very sorry for your daughter. It's terrible that she is so ill over this.
Thank-you for sharing your experience and alerting others like me...

Lucky.

[jennifer]

if caramel coloring is bad, would pure vanilla extract be ok? I has a coloring too but maybe it is natural? We have been using a tiny amount of pure vanilla extract and have seen some mild reactions, but only mild. I had no idea about caramel coloring either.

[colormist]

Whoops. Just realized I missed caramel coloring on my blog list. I feel like a negligent mom. It's on the list now.

To answer Jennifer's question, Vanilla is bad.

An alternative that some of us use for a vanilla-like flavor is Mapleine. Read the ingredients to make sure it doesn't have vanilla or caramel color. McCormick makes a variety that you can find on store shelves. I found mine at a local Amish grocery.

[charlie]

If you have access to fresh vanilla pods you can make your own by soaking it in hot water or milk, but make sure it isn't treated with sugar for preserving, if its very sticky steer clear.

I came across some lemon and some orange extract in tesco recently, it is in sunflower oil so I reckon a few drops of that should be ok and it made a lovely flavouring for ice cream.

[jennifer]

oh my, guess that explains why my daughter has not been perfect for the past few days. She has been having a tiny bit of pure vanilla each day in dextrose cookies I made her. We keep trying to figure out what she has eaten that caused the problem.

[sarosh]

Fred,

I think we get addicted to the tart taste because it must give us some vitamin C which all of us are lacking in and crave. But, most of us Indians have dextrose ( called Galxose -D) at home- it is an inexpensive form of rehydratant for many people - I used to eat it by the spoonfuls and was very addicted to it until I started questioning its purity ( which is very doubtful) and if it is not pure then it probably kept me in a state of dextrose- hypoglycemia- more dextrose cycle and so there are probably two reasons we get addicted to Rockets etc.

[deb]

You are welcome lucky - and thank you colormist for the tip on Mapleine - I will try and find that. Just wondering, Would artificial vanilla extract that does not have colorant added to it be safe, theoretically?