HFI & Kidneys

[lini]

I was recently diagnosed after I read an article in First magazine about FI I did some research and discovered HFI so I went to the dr and that's what has been causing all my problems, basically my whole life. The low blood sugar, IBS, feeling foggy after eating. i decided at a early age it was best if I didn't eat breakfast or lunch until after I got home from school in case i got sick. And i could function during the day.

I was diagnosed with pCOS in my 20s so we were sure that's what caused my low blood sugar. My friends would tease me when we'd have dinner and I'd have something sweet, even just fruit and the next thing I was laid out on the sofa snoozing away.

Back to the present. Five years ago when I just turned 50 I discovered I had a kidney stone, turned out I had high levels of uric acid and had one kidney w/ only 15% function and 85% for the other. They sad it was probably a condition I was born with they didn't know the cause.

So how does HFI effect your kidneys? When i did the strict HFI diet I had no kidney pain for the first time in years. So I'm certain there has got to be a connection. There is next to nothing on the subject and of couse when i went to see my kidney dr she never heard of HFI.

Anything you can advise me?

[colormist]

(Now I could be entirely wrong, but...) It is my understanding that your kidneys try to flush out the fructose from your system when you have HFI and accidentally eat some fructose with dinner. If I get the smallest amount of fructose in my meal, the next day my kidneys are in horrible pain and I have to drink a lot of water to get them to feel better.

I experience my first bout of severe kidney pain when I was a teenager and my mom took me to the hospital in the evening. By then I had drank enough liquids that I was feeling fine. I didn't know that I had HFI until I was in my 20s, so I still would try to eat sweets.

I would suggest going on a very strict HFI diet (none of this cucumbers and beans stuff that I try to pull on occasion) to see if that helps your kidneys any. Maybe run this idea by your doctor and suggest running a followup test on your kidneys to see if the restricted diet helps their function. I'm not sure if kidneys can heal themselves.

Also, if your kidneys are that bad, I would suggest having your liver checked out. I know it can't heal and it also becomes damaged from eating fructose.

[lini]

Thanks so much. Yeah, I have an enlarge spleen and enlarged fatty liver. But it's not that bad.

[lini]

im working with lini on this and we seem to know more than the drs lol

[ukbill]

Colormist is right.

With us "normal" HFI'ers we do produce a tiny amount of the chemical that "cleaves" or breaks down the Fructose molecule..

Its produced in the kidneys!

A small percentage of us are 0-0 ie we produce non of the chemical whatsoever.. for these people the condition is VERY much worse than for the rest of us!

But by reading what you have said Lini it looks like you are eating FAR too much fructose in your diet.. you certainly should not have an enlarged spleen or a fatty liver and would not have if your diet was Fructose free.

Unless these conditions are caused by an unrelated condition.. (unlikely)

If you list your diet we can all help point out things that are no-go for us with HFI

With Time and a good safe diet your liver will recover.. I am not so sure about the spleen but I would expect that to recover in time too.

I am not sure if your kidneys have the ability to regenerate like your liver.. I hope so but at least we should be able to help you avoid damaging them any more.

Welcome to the site by the way I hope we can be of help..

[lini]

Hi UKBill,
I'm 55 and just found out I have HFI about 6 weeks ago. So I've been eating wrong my whole life. I was lucky to grow up with parents that weren't into eating fruits, sweets or soda. If there was it was for company or a holiday.

Anyway, I've been told my kidneys will not improve but they haven't gotten any worse since the damage was found 5 years ago.

Right now I'm trying to find out what I can eat without having any problems. My stomach cramps have gone away.

Is there any bread we can eat?

[lini]

PS Thanks guys, you have no idea how nice it is to talk to someone that understands. Thank you so much.

Also, no kidney pain today!

[lini]

Aug 29, 2011 18:41:18 GMT -5 lini said:

im working with lini on this and we seem to know more than the drs lol

Just so you know my husband, Jay, wrote this, I'm not nuts. He cooks every night, so before I leave from work every day I get a call from him asking "Do you think you can eat this?"

[kim55]

You don't say where you live. In the United States most bread has sugar in it. Usually French or Italian breads have the lowest amount (except for the "sweet Italian" that my local grocery store has started selling--yuck!) If you are lucky you can find crusty French bread with no sugar at all. Mexican bollo rolls are also low in sugar.

Avoid hamburger and hot dog buns. Fast food sandwiches can be a real problem. Tortillas vary in the amount of sugar. I always read the ingredients list. I can tolerate small amounts of sugar, but I don't even try to eat any bread that lists sugar or evaporated cane juice before the part that reads "less than 2% of the following ingredients," or that lists multiple types of sweeteners. I also automatically skip any bread or any food that contains honey or high fructose corn syrup.

Don't bother trying any bread that looks yellow--it will contain eggs and sugar. I don't know why, but egg breads are always sweet. Avoid whole wheat bread. You can read what other people have posted here about the bran breaking down into fructans. What I noticed before I heard about fructans was that whole wheat flour often tasted sour and the bakers added extra sugar or honey to make up for it.

About the doctors, don't get me started! I agree that they don't understand HFI. The last time I mentioned it to a doctor he basically acted like I was crazy, then after asking me a lot of questions said, "You understand this better than I thought." Of course I did, he had only read about the condition where I had been living with it and trying to figure it out for 40+ years! He also never answered the question I had asked him in the first place. And forgive me for repeating this story, but when I was in the hospital overnight and asked for something to eat, I told them I was fructose intolerant and they served me a pear. I could go on . . . So I don't have great faith in medical personnel on this issue.

[ukbill]

Lini yes bread is safe.. if you make your own..

In the UK we are lucky almost all our bread is safe, except for MacD's of course!

When buying bread if its traditionally made with yeast then the yeast is likely to eat a lot of the sugar and turn it into carbon dioxide which makes the bread rise..

However Modern factory made bread is just pumped full of gas and extruded into the tins so any added sugar is still all there.

If you need to be ultra safe then use plain white "strong bread" flour yeast and add 1.5 times the amount of sugar recommended but use Glucose / Dextrose instead.. you should not be needing more than 1 1/2 teaspoons full per large loaf if you are using Glucose / dextrose or 1 teaspoon in using sugar.

If you mix the sugar, glucose or dextrose into warm water with the yeast and let it start brewing first then you can be certain almost all the sugar's going to be used up in the baking process.

I second Kim55's comments on whole meal flour.

Do not use whole meal flour.. for 2 reasons.

1/. it contains a little Fructose from the wheat germ.
2/. the Bran will breakdown in the intestine and convert into sucrose.. which is table sugar.. and so inflame the bowel and cause lots of problems..

If you need a type of fibre to keep things "naturally flowing" so to speak I have discovered a none digestible plant fibre that works a treat.

Psyllium Husk is the stuff. Its available in whole hulled husks (how I have it) or in a fine ground powder.

The fine powder needs to be added to flour or something like that as it clumps up on the first sign of water.

Could be great added to bread flour in very small amounts.

I have the husks on my breakfast cereal with milk or if I'm not having cereal I'll make a milk shake with it in and whisk it in with a hand blender.. leave it to stand for 5 min then whisk again after its swelled up.

Well we cannot have prunes can we..

Hope this helps

[ukbill]

Aug 30, 2011 20:19:11 GMT -5 lini said:

Hi UKBill,
I'm 55 and just found out I have HFI about 6 weeks ago. So I've been eating wrong my whole life."

Lini it sounds like you are about to discover a whole new life !

Your liver should recover with time.. it might take a deal of time 2 years or so before you will really start to feel like a new woman.. your energy levels will go up and your immune system will kick in a lot stronger than it is likely to have been working of late.

IF I can be of any help PM me or post a general query. for us all to help you.

[Tammy]

Hi Lini,
Making your own bread is always a good idea as others said.

It's also possible to find some that is ok. The best thing to do do is check out your local grocery's bakery. Sometimes they make safe bread since they don't use the preservatives. And if they don't make a bread, check the rolls. French or Sour Dough is a good starting point to check. Also some of the heavier Jewish bread is good. They don't need the sugar to make the yeast rise.

Matthews White Bread and Matthews English Muffins are safe, but unfortunately they are only in the Boston area.

Do you have Panera Bread in your area? They also have some safe things.

Good luck with your search and just be persistant.
Tammy

[colormist]

MMM... Panera Bread! Their sourdough is AWESOME, as is their asiago loaf. Yum, yum, yum.

Read all your bread labels. Look for local-made breads (fancy loafs in the fancy bread section). The shorter the ingredients list, the better chance it's fructose free (and the less ingredients you have to read). I've noticed that bread can also rise with salt (instead of sugar), so fructose-free breads aren't impossible to find. I have a few choices in my local (teeny, tiny) grocery.

Whole Foods has a sourdough sandwich bread that's yummy. It's their generic brand (forget the name).

Meijers also has sugar-free english muffins (Meijer brand). I think it's sourdough english muffins, but read the label to make sure.