Update on my tedious odyssey of taste

[dryope]

Hi Everyone,

Just an update. I discovered potatoes are possibly not OK right now (even when peeled, cut and soaked for a day) except for small amounts of plain chips (crisps for non-US folks). Eggs may also be a problem. So I'm back to rice and safe meat/fish/dairy.

I've also had to accept that wine is probably not OK. Maybe I can locate a reliable dry one one day, but right now I'm just giving it up. It definitely is causing problems.

Anyway, I'm not self-diagnosing, but I am trying to find a 100% safe diet, and that seems to be a diet that eliminates fructose and sucrose as much as possible. When I eat and feel good afterwards -- well, it's a weird feeling I'm still not used to. I'd certainly like to be at the point where I can take it for granted.

Sorry -- no question or point for the forum. Though I am getting sick of fending off questions about my diet. I'm known as a foodie in the office, so now I'm sneaking in the kitchen to heat up a hot dog to eat with rice when no one's around and refusing all food at social gatherings. I tried eating seaweed and fried egg over rice when my husband and I were out on the town (I had a bag of chips in the car just in case) but then I crashed from something in the food. I think there was some unadvertised light vinegar on the seaweed--I barely touched the eggs. That was a rare foray into eating food not prepared in my kitchen or by a company I've researched, and it will probably be the last for a while.

This is all a bit of a mind game. The sweet taste that appears from time to time in my mouth -- is that related to fructose? Or is it something else? It doesn't seem to show up after eating rice and meat, but maybe I'm just crazy.

Anyway, sorry to rant. Thanks for giving me a place to get all this out!

[charlie]

No, no, rant away, congratulations on giving up the wine for now, you were worrying me the way you were headed with that.

Socially eating is a real pain as people just don't get it. It is something we have all been through and can sympathise with that and I think gradually everyone learns their own tactics for coping with that. With Megs we just stuck to places we knew had something she could eat but I do think it has had a huge impact on her desire to socialize even now she is on a more open diet.

I always like Tammy's repost the best that Regina would throw up all over everything if made to eat what didn't suit. That does shut alot of people up pretty fast. Meg managed to empty a railway carriage fast yesterday on the way home from her sugar challenge test by announcing very loudly she was feeling very sick, then that she was going to be sick, luckily she wasn't actually sick.............

I know you are still early in diagnosis but trust me, the basic sound advice on here is to keep the food simple for a long time before trying new stuff and you will find that will clear your system so much faster and enjoy the good feeling, the taste in your mouth is probably your body using a natural warning instinct. Meg gets a tingle on her tongue.

If you are feeling better on the fructose free diet then believe in yourself and stick with it and gradually build up your safe food lists. You are obviously going to have to make a major lifestyle change for now but the if the end result is a healthy you then isn't it worth making the sacrifices.

Good luck, plod on there and you will get there in the end. And keep away from the wine.........

[colormist]

I really hate going out with friends and family. Inevitably they'll try to eat somewhere or make a dinner for me. I once went to see my in-laws on Thanksgiving and they had made a whole spread for us. Honey baked ham, baked beans, sweet rolls, potato salad--everything had sugar in it. I tried to eat something, but everything made me nauseated. I ended up just eating some peanuts I had packed in my purse (which still have fructose, but it was better than the alternative).

Whenever I got to lunch, I either can't eat anything or everyone makes a big deal about choosing a location where I can eat something. Or, even worse, they try to make me something and it still has fructose in it. Then they say, "Oh, but it's low sugar, so it's okay."

Bleah.

[nicoleh]

why don't people get it? Laura with your in-laws, what had you told them about what you can /can't eat and why? is it that they didn't care if you couldnt' eat anything at their place, or didn't remember, or didn't think it's important enough? I know this is going to be an issue for us - would love any insight into the psychology of what makes people think it's ok to feed people things that could kill them!

[ukbill]

I always entertain at home so I do not have the above problems or if I am going somewhere I will take an "offering" which I of course can eat!

If its a BBQ or similar then all good I make my own BBQ sauce and rice dish and Just turn up with them.. no one ever refuses extra food at a BBQ

I share eating out problems though, family Weddings, company xmas dances etc are all fraught with risks..

Luckily by not having sweet been given flavoured foods as a child (yes its that old old plug again but some peole just do not get the message!) I can identify levels of sweetness in foods and generally pick my way through a meal and stay safe (ish) not had a reaction in many years from eating out..

Luckily IN the UK we are still a few years behind the USA in the addition of sugar to EVERY form of food.. although it is now getting ever harder to find safe foods even in the Supermarkets..

Even Tesco where I mostly shop has now included sugar in the cure of ALL their smoked Salmon which is a real disaster because I love that stuff and its so healthy and full of good oils!

I will try to get hold of their food buyer and ask for at least one variety without sugar!

I need to have words with them about their testing for sugar on the labels as well how can sweet potatoes have the same amount of sugar in them as old floury white potatoes??

The worst places I have found to eat (other than Mc D's) are pretentious restaurants trying to cook quality food and getting it wrong so to hide the fact their food has no taste they put a sweet dressing or sauce all over the food.

Well I suppose its cheaper, easier and much quicker than making proper sauces and base stocks for the meal.
Many years ago (not long after my "challenge test" so I was very sensitive as well) I went to stop at a cousins house while I was working up that end of the country, his wonderful wife had cooked a superb meal.. Leaks in cheese sauce etc.. there was so little I could eat I really felt ill after, through trying to eat as much as I could because of embarrassment.

[colormist]

Nicoleh:
I hadn't told those in-law (my husband's parents are divorced) about my condition really. I get tired of explaining it and usually end up having somebody that THINKS they understand make me something special that I STILL can't eat do to their lack of knowledge. The dinner was a surprise. I was very distraught and they could tell I was upset and not really eating anything. The next dinner they asked specifically what they could make. I think, after much discussion, they ended up ordering KFC. I ate enough food to make up for the lack of eating food at the last dinner.

However, my OTHER IN-LAWS have heard the story and the extent of it all. This was my husband's mom. She loves to cook things for people. I always tell her not to cook anything for me. This does not stop her. I've explained it to her at length and she's a nurse, so you'd think she'd have the basic understanding, yet she would still cook things with vegetable broth, put bacon/ham in green beans, or say "but it says low-sugar/natural fruit juices".

Nowadays I just bring food with me. She tries to make me something and I say "no, I'm fine with grits. I'd rather eat boring and disgusting looking food that doesn't make me sick than eat something that's pretty and will have me hanging over a toilet and shaking for the next few days."

I think it might be their confusion with diabetes. They see fructose as a sugar and diabetics have problems with sugar, so clearly (to them) it must be treated the same way. Sadly, this is not the case.

[nicoleh]

wow, you're so right - my experience with onion free in the past (I had an allergy that was really severe, gone now, phew) - my MIL would make something special with "not much' onion in it - so much worse than if she hadn't gone to any effort.

once DD gets a firm diagnosis we're going to sit down with them and explain why we will always bring her food and why we won't be letting them cook for her. they are not the sort of people that are careful enough. phrases like "not much" and "only a little bit" pepper their discussions of foods that they know someone shouldn't eat.

so glad my mum is used to catering very carefully - she's been great with making DD special safe foods. I think she'll be the only one we trust.

I'm comforted to hear that I'm not the only one! thanks.

[colormist]

This thread and a conversation with my coworker inspired me to post this on my blog: fructose-free.tumblr.com/

I've decided to relate fructose to salmonella poisoning. People would not want salmonella in their food in ANY quantity, because they could get sick. Those of us with HFI has a similar reaction to fructose (et. al.). If a little salmonella isn't okay in their dinner, then a little fructose isn't okay in ours.

[ukbill]

I like that idea

I would like to use that one too if you don't mind?

[dryope]

Hey all,

Kind of a weird follow-up question: I've lived most of my life without a lot of energy apparently -- particularly the last year when I was trying to figure all this out and inadvertently got down to 99 Lbs in the process (I'm 5'2", so not at a dangerous weight yet, but still). Anyway, now that I'm eating clean I have SO MUCH energy. This has led to two problems:

1. I can't get to sleep for hours (and oversleep when I finally do). I am just UP. When I've accidentally (or sneaked) something with sugar in it (I'm reintroducing potatoes this week, for the vitamins) I get sleepy then am alert again. If I have a bunch of sugar -- like wine, which tried once last week to see what would happen -- I sleep more lightly and wake up with my alarm. Is this something you've heard of before (and will it go away)?

2. I want to start getting in touch with all my friends again -- they are too lazy to call me (I'm in Japan, +13 hours for them, a logistical nightmare even my mother can't solve) but I finally have the energy to be cheerful and friendly on the phone. Up until now I was only myself if I hadn't eaten yet -- after food, I felt like a jerk. But how do you explain all this to the uninitiated? I think they'll think I'm just making excuses. If I had Crohn's or something it would be different, but this sounds so wispy-washy. Plus, there's the never-ending explanation that fructose is basically in everything. ("Yes, even that.")

Oh, and I am mourning the loss of almost all foods, so I went out and bought some Hermes scarves and Burberry outerwear. I had no idea this was the form my grief would take. I can't afford too much more of this. But if I'm going to eat nothing at social gatherings and have the weight of an anorexic (it is taking forever to gain just five pounds downing oil and dairy), at least I look fabulous.

Anyway, I wish I could take back the years of being foggy-headed and grumpy. All I had to do was keep eating what I ate as a toddler: rice, milk, and chicken. Madness!

[dryope]

I'm sorry, one more thing, to follow on the spot-on salmonella comment: anyone else get Monty Python's Spam song in your head when people offer you food that "doesn't have much" fructose in it?

[Tammy]

Colormist, I REALLY like that explanation. I will remember that one, too.
As for Weight Watchers (as you mentioned on your blog for those who didn't read it) I have been down the points road. It works. It would be harder being HFI but it would still work the same. You can eat any food you want to eat, you just have to give it the points value. Mushrooms and Lettuce would still basically be free and make things more filling. It's really more about learning portion control and what's a better choice to eat. Pretzels have less points than potato chips, therefore you can eat more pretzels so choose them.

You don't have to eat fruits and veges to make the points system work. They are just more filling and promoted as "healthy". Things like yogurt and low fat cheese are just as good.

[colormist]

Dryope, I've found that I spend lots more money on yummy food since going HFI-free. I make (almost) everything from scratch and savory foods are the best. I do have a problem avoiding junk food, though. If you wanted, you could always find some crisps/chips.

I think your sleeping issue might resolve back to HFI (as you've mentioned). You're so used to being tired all the time that when you suddenly have energy, you don't know how to sleep. Try to maintain a very strict sleeping schedule (even doing the exact same routines every evening before bed).

Spam, spam, spam, spam, spam, spam, baked beans, spam, spam, spam, and spam: www.youtube.com/watch?v=g8huXkSaL7o

Let me know if you guys have any luck with the salmonella explanation.

Tammy, thanks for the info about WW. I saw they had a year subscription to their magazine for $4.50. I was still uncertain if it would be worth-while (given my lack of luck with recipes).

[dryope]

Thanks, colormist! I've been reading your blog to help me cope with all this. I'm hoping I can get to a zen-like state of acceptance about this and your blog is a good model for what my attitude should be.

Thanks everyone, for letting me rant!