More reactive the less in your diet

[charlie]

Hi all,
would appreciate any ideas from you all on 2 matters
1 - do you react to smaller and smaller amounts of fructose the more you eliminate it from your diet, Megs seems to react more to small quantities now that I don't think she would have done in the earlier stages of diagnosis when she probably had more going through her system. We are having reactions even with watching like a hawk what she eats, the only thing I can think of that is left is potatoes. she at the moment has no fruit, no veg at all and nothing processed it is all home made. If so is there a stage when this reverses and you can start to cope with small amounts occasionally

2- does anyone also have a problem with glucose powder or dextrose, she can't seem to cope with these either and gets really bad blood sugar fluctuations with it, we are still awaiting referral to London for this.

[meaniejean]

Charlie,

Again, we are not diagnosed as HFI, just FI for now - Cal's genetic test will be happening soon. We also have had much more extreme reactions to trace amounts of fructose since restricting. This has happened to me as well. But, I will say, that when I was feeling awful the other night, I realized that I had always felt that way after having that particular food - it had just become my "normal." I am assuming this is what is happening to Calvin and Meg. Sawyer reacts very violently to everything and always has - probably because he was so little when he was exposed and because he hasn't learned that it is "normal" to feel yucky all the time.

I know this is exhausting, but be sure to check EVERY little ingredient. I had been making a quick bread for the kids that contained vanilla. The other night I made myself a vanilla milk after supper. By bedtime I felt awful and I was in pain and dizzy the whole next day. So, I looked up vanilla on this board and sure enough - 500 mg/tsp - and I had had about a tsp - probably put me over my limit for the day. So, I stopped using the vanilla in the bread and the next day Calvin's BMs were finally normal and his urine ketones disappeared. Even a couple of teaspoons of garlic powder in the risotto was enough to throw him off on Monday.

I also think that maybe because they recently were given such a large dose of fructose upon fasting (that stupid breath test!) there is probably still damage that is trying to heal and every little tiny bit is keeping them from getting completely better. I'm not sure this is true, but it certainly seems to be what is going on.

I don't know about the glucose sensitivity - it used to seem like Calvin was crashing after he had glucose, but then I realized that it just wasn't sustaining his blood sugar for long because the accidental fructose ingestion was still messing with his system. He used it up and when it was gone he was right back where he started. Of course, it could be completely different with Meg, but that is what seems to be happening with Calvin. Sawyer is too young to eat glucose tablets, but he eats my baked goods that have dextrose in them - though he doesn't like them to be too sweet. We haven't noticed any kind of dextrose problem with him - just SUPER sensitive to fructose.

Best to you - and happy holidays!

[colormist]

Hey Fred! My mom makes those rolled-up pie crust treats for us, too. She'd sprinkle ours (my brother and I) with cinnamon, though. I think they're officially called rugalogs/rugalah. They are so yummy (and I'm sure, super fattening).

1 - Yup, I've been reacting to smaller and smaller amounts of fructose. Yesterday I tried a dish with avocado on it and am regretting my choice today (though, to be fair, I'm not 100% sure what on the plate caused my illness). I didn't discover my diagnosis until a couple years ago and up until then I was eating digestible cookies, tomatoes, oranges, lots of veggies, and various types of low-sugar cereal (like cherrios and rice krispies). My brother still eats this way (he also has HFI) and isn't affected by his sugar intake, but I'm pretty sure he's going to end up in the hospital soon because of it. Nowadays I can't handle 90% of the stuff I used to eat and I have some pretty severe reactions to accidental sugar ingestion (I don't typically puke, but I definitely feel like puking).

2 - I have read that there are some cheaper brands of glucose tablets that actually have fructose in them, so be sure to read the label. Other than that, I could really use some dextrose right now because my brain really isn't performing up to par. *eats gobstoppers* I haven't really experienced any bad side effects from dextrose or glucose (unless there's some other "natural flavors" in the ingredients that are actually fructose). Typically I eat them (gobstoppers and smarties) as a dessert after dinner or a treat when I get sleepy at work. I tend to eat them with food, so I don't know if that might have an affect on my results.

[meaniejean]

I also have a brother with suspected HFI. He is slowly lowering his fructose intake and the clotting dysfunction in his legs is improving as is his kidney pain. I have a sister who just had a very severe hypoglycemic episode after drinking some juice after a couple of days of not eating very much. She was fine right up until the juice and then ended up on her bathroom floor. I have 9 siblings so this has been very interesting.

Fred - that is so funny you mentioned the pie crust. My mother-in-law brought some of that for us when she came over for a turkey dinner. She put some cinnamon on some of them. So tasty! I have been meaning to try the biscuit recipe you posted. I love biscuits and butter and butter and more butter. When I was little they had to keep the butter dish out of my reach.

We are really trying to limit our dextrose now. When we have bad reaction days we let Calvin have glucose tablets, but we try to get him to eat some crackers or bread right after - if we can get him to eat. He seems to be recovered from Monday's garlic powder episode now. Yay!

[charlie]

Thanks everyone, reassures me on point 1. Glucose is interesting, she seems to react to several varieties so guess had better wait for medical advice on that.
One problem with reactions especially as she is 6 is there could always be another reason, she has been difficult, screaming and highs and lows for 2 days then just as she was about to leave school she was very sick, now there is a bug going around so you start guessing, is it a bug or a reaction to god knows what. life is just one big conundrum these days,

Does anyone have ideas on marmite, as she likes that and has daily marmite sandwiches, just had a flash of inspiration could it be this? how is it made? It is on the list of OK foods on the british diet.
Pastry doesn't seem to work for us, I think I make good pastry but megs won't eat anything in pastry, she did have some today at school I made for her lunch so is it this that caused her to vomit for 5 hours or a bug?
All I want for Christmas is some answers!!!!

[julienc]

Uhhhh, what's marmite???

I LOVE pie crust trimmings!!! This was also a favorite of my brother and mine growing up. I have been known to make a batch of pie crust, stick in in the freezer (unbaked), and nibble on the pieces. I know that sounds so gross, but oh my gosh it's my special ultra-high-in-fat treat that I make once a year or so.

I also can eat the heck out of pixie sticks without having any reaction, so I don't think I have glucose/dextrose problems.

[charlie]

What's marmite, the highlight of megan's life, that's what.
Maybe you know it as vegemite, that is similar. It is Yeast extract, black spread. Megs really loves it but we are giving it a miss incase.
Potatoes we have been using too, only white old ones but I have taken those out as well and once she is back on track then we will try them again. For now I just want to get her feeling better and some decent sleeps.

[ljs678]

On marmite, I have a diet list that says that marmite is not safe, but vegemite is.

I am pretty sure you can get vegemite in the UK now, so you might try swapping it over and see what happens.

They taste quite similar (but I think vegemite is vastly superior, seeing as I am Australian). I am looking forward to feeding my baby vegemite sandwiches when he gets big enough.

To anyone who has never tried either, they are definitely an acquired taste....impossible to describe

[Tammy]

Is there anything in the states that this compares to? I still have no idea what it is.

[lisa]

I have never tried it, but here's a link you might be interested in reading: www.cockeyed.com/inside/vegemite/vegemite.html

It gave me a good chuckle anyway...

[charlie]

Hey, thanks for that, did give me a chuckle. Will try vegemite cos I have had to hide the marmite, it is the only thing she has fought over so far to be eliminated. will carry on researching it, have done a weeks elimination now with that and potatoes and she is now sleeping through the night which is great for mum but very sad if that is the last trigger for her.
Will see if I can google anything about marmite for your info.

Happy Christmas everyone as probably won't post again till after as will probably be manic few days keeping a hawk eye on what the family consider safe,

Charlie and megan

[charlie]

Well, I can't believe the world is this sad, I have found a website on marmite with a chatboard for people as to whether they love or hate marmite!!!!!.
This is a big topic in England with alot of TV ad campaigns the latest of which uses Paddington Bear in it.
2 sites are www.marmite.com and www.vegemite .com
also useful is en.wikipedia.org/wiki/Marmite
sorry can't do clever stuff like log you straight onto it
Looking at the info though there may be something in the production of the yeast extract from brewing beer that may be a trigger, it does say some may react to celery extract in it too. marmite may be more off the aussie list as the New Zealand make does have sugar added apparently.
I think unfortunately the elimination results of good sleeping has seemed to give me my answer though it narrows even more packed lunch options, shall just have to continue my invention of tasty meat pastes.

[mazian]

My daughter also isi more reactive after going on a fructose free diet. She cannot have potatoes. She is just on Polyjoule (a metabolic glucose polymer from the hospital) and rice, almonds, eggs and meat. But we are reducing the eggs now that we know that they also have fructose. Interestingly enough, she only eats the whites which I believe doesn't have fructose in it.