Mary, Sarah, & Fred...

[kristen]

And anyone else that has a perspective on this....

Question? Just curious about your thoughts on something...

All three of you made a comment to me in the same day about becoming more sensitive as you get older...you're all so funny! And when considering your age span it's even funnier, but it got me thinking...

Sometimes it seems like Coley reacts too much to stuff. I know there are a couple others here that seem to be as sensitive as he is, but from my perspective it sorta makes sense as they are less into their restriction, or perhaps may have been a bit more 'damaged' than Coley was...not sure...but so far I've sorta just made note in my head that he does seem to be more sensitive.

But I've also wondered about 'build-up.' I know it's virtually impossible to be fructose free. I've found 2 things that have me wondering how fructose free things like meat and dairy are:

1. Eggs have fructose
2. During the ATP process the cells in our muscles generate sorbitol naturally.

So, I suppose it's not completely crazy to think that during an animals ATP process that they might also generate sorbitol. And if eggs have fructose what else might?

And then there are grains...I suppose it's not completely crazy to think that they are not completely fructose free either...I mean is it possible in a major manufacturing plant to miss some? Or could there be some, even minuet amounts in the 'starch' like potatoes? Or is it possible that just like potatoes some starch is converted to fructose in cooking?

Ok...so I guess it's possible that even with VERY strict restriction, it's unlikely that anyone could really get to fructose-free. Would you agree?

So, I've been wondering about the way Coley reacts to stuff...and then your comments came across my inbox...and I'm just wondering if you think it's possible that it may be more of a build-up thing than an 'age' thing.

Or let me try this question in a more direct way...how long do you think the body can 'store' it up to have a build-up effect?

I'm still not all that clear on how the junk gets eliminated...I mean if the liver isn't doing it effectively, the kidney isn't doing it, the intestine isn't doing it...if muscles are producing it at times...where does it go?

Thoughts?

KJ

[Peter]

Hi there,

I have HFI. I can tell you that fructose gets converted to uric acid and it gets stuck everywhere in the body, it's often visible as the skin gets a yellowish tint. To clean it out I drink a lot of green tea. But be careful not to drink to much because it makes you go nervous with time...

Good luck!

[azmary]

Oh my gosh, I can't believe I didn't see this post until today, KJ! I check this site every day, but I must hang out too much with the kids and I don't check the "adult" section enough.

I have no idea how long stuff hangs out in our systems, but I have begun to wonder about other "unexplained" health issues I have had. And what about the fructose that is apparently hidden even within the fructose-free diet.

EGGS?? Have fructose ??? Just last week I was trying to figure out why I can't eat a hard-boiled or scrambled egg without my symptoms kicking in. My family and co-workers can not believe the things that bother me (like french fries more than potato chips), or a little garlic, or an egg. You can hear their eyes roll !!!!! Some have lovingly suggested I seek psychiatric help because it's so obvious that I have "food issues." DUH!!!!!!!!!!!!!!!

So why does it take more than 3 days for some of us to calm down from a flare-up? Some of us feel it throughout our bodies like the flu, and others have 'only' gastric distress. And are there really no long-term affects on the liver, kidneys, and brains of DFI's??? How would anyone even know that? It's too bad that HFI's have those consequences, but why aren't DFI's concerned about it?

Sorry, just frustrated about how little interest there is in researching the various FI syndromes. Like they told me at Mayo Clinic, "sometimes we're just better at diagnosing things than treating them..." arrrrrrrrrrrrgh!!!!!!!!!!!!!!!!! mary in az

[kristen]

You know Mary, for whatever disfunctonal reason, sometimes when I'm on the verge of sleep things hit me like "DUH" and the weird part, it's often about someone else...whatever...the other night I was thinking about the whole 'sensitivity' issue...I think it was on my mind because of the wheat question on the listserv...

Anyway, have you had scopes & such on your GI tract? Or were you diagnosed based on clinic evidence only?

Reason I ask, and say DUH!, is that for about 10 months Coley went through every GI test known to man to pinpoint the source of his vomiting and aversoin to food. One thing the Drs said was that there are allergies and then there are sensitivities, where sensitivities could include stuff like diatary intolerances.

Ok, if either exists the intestines will become inflamed and irritated, sometimes even ulcerated. If this persists then it could also lead to the big C.

The simple version they gave me was to think of the GI tract like a sponge. When it is not 'enlarged' it is not very porous. It obsorbs only the tiniest particles...as it is meant to. Once inflamed the pores become enlarged allowing larger & larger particles in. These particles can do all sorts of harm, including leading to allergic reactions. If they make it far enough in the body, because they are too big, they are recognized as foriegn and attacked - hense an allergic (immune) reaction.

But in between 'irritated' and allergic there is just 'leaky' (some physicians don't buy into this whole thing - as it's not defined specifically enough to diagnose, but the phenomenon as it's described occurs)...where things get into the system that are irritants to the system, but not necessarily 'big enough' to be interpreted as a threat by the immune system.

When this occurs, it's much like what happens with HFI, to a point, there is basically junk in your system that shouldn't be there. And yes it does make you feel like crap: tired, irritated, sore, like the flu - which BTW, the bug doesn't make you feel that way, it's your immune system's reaction to the bug...it's weapons against it (so to speak) that you are feeling. So it makes perfect sense that the feelings are similar.

Additionally the irritated GI tract would likely react negatively to lots of stuff it wouldn't normally if it wasn't inflamed. Giving you an upset stomach on things it wouldn't do in the ideal state. Like in the same that if you rub alcohol on your sore muscles it feels nice, however if there is a small cut there it will hurt like the dickens...

So, given that you are probably in a healing state as well...I don't think it's out of the realm of possibilities that you could potentially get yourself more in line with the DFIers diet in the future. For now, I think, and obviously your body agrees, that going strict is the best way!

Anyway, for some interesting reading, google 'leaky gut' and you'll get lots of better info than what I've got up there.

If I remember right - there are things to promote GI healing, with our luck it's loaded with fructose...but worth a look see anyway.

Just some thoughts!
KJ

[azmary]

Bless you, Kristen! I know you are sooooo right about the damaged intestinal wall being more sensitive to more things while it is healing.

Yes, I did have all the scopes and biopsies, CT's, ultrasounds, nuclear medicine, and xrays. (It was Mayo Clinic, after all!!) There was a lot of intestinal inflammation and gastric ulceration, consistent with my long-standing history of irritable bowel syndrome. I have been getting these GI studies since I was a 10-year-old for the same reasons, but this was the most recent bout that landed me flat on my back.

Thanks for the reminder about leaky gut - at one point I had figured that was what was going on. That was before I actually had this last round of tests. I wish I had a reasonable guess on how long it will take to heal a gut that has been irritated for the last 40 years!!

Probably I'm on the right track for the first time ever...all I want is some improvement in health and energy. It would be OK if I never returned to the DFI diet, but it is very sweet of you to be that hopeful for me!

Also, dear KJ, you are right about many of the remedies for irritable bowel and acid reflux. It is recommended to eat lots of raw vegetables, fruit, whole grains. OUCH!!!! And - get this - the leading medications on the market contain mannitol, sorbitol, and/or lactose. Did the MD's know this? Noooooooooooo, when I didn't improve on the meds, I googled the RX inactive ingredients and then reported it to the wide-eyed physicians. hmmmmmmm. thanks for listening and caring...it means a lot to me, and you know your family is in my thoughts as well. mary in az

PS. Is there really fructose in eggs? REALLY??

[kristen]

According to the USDA database there is, albeit small - it's there.

I know - meds are the worst! So much junk in there! We just avoid them all as much as possible, and in this day when it seems Drs wear the pharmaceutical salesman hat...it's hard! I'm constantly battling recommendations to soothe Coley's symptoms with drugs! It's SOOO frustrating.

I generally ask them if it makes sense to eliminate of alter his symtoms before we figure this out...don't we need those indications unadulterated to sort this all out? That generally shuts them up! It was hard to decline sleep aids though...that I needed! But we did none the less!

And now here we are better than ever - still not perfect, but doing fine enough without them!

Ok - tangent there!
KJ

[colormist]

Fructose in eggs!! Man, this is really crazy. I can't believe how many foods I have adversions to that actually have a reason behind them. I just thought I was an unbelievably picky eater.

[sarahk]

Hi,

I must have missed this thread.

I checked Dr. Tolan's website, and eggs as fructose free:

www.bu.edu/aldolase/HFI/treatment/index.html

[kristen]

The USDA reports a small amount:

www.nutritiondata.com/facts-B00001-01c201n.html

I'm sure it's like everything else...lord only knows the truth! But funny how some are adverse to them..c.ourse it could be just a preference thing too....

Sure do wish we had a reliable source!

KJ

[Tammy]

We have never had a problem with eggs. Regina eats them all the time.
Not only in things, but just eggs also.
Tammy

[Tammy]

Kristen,
Have you checked to see if aspartame contains glycerol at all? I could be way off base here, but I still just have this nagging feeling that whatever he can't take that they use in aspartame may be the main problem. I've never tried to find out how/with what they make aspartame.

Now I've been wrong many, many times before, but this has nagged at me ever since Coley didn't do well with the puddings.
anyway, just a thought.
Tammy

[kristen]

I did try looking into it a little - even after the who idea of the glycerol being the larger 'trigger' came up.

Aspartame is derrrived from a protien amino acid. I was also wondering about Acesulfame-K since it's generally side by side with aspartame...but I haven't looked into it yet.

Really, I don't think they are related to his FI though because the reaction I saw was more of a skin thing than those types of signals I get when he's been exposed to fructose/glycerol.

And on top of that, and really the basis for me suspecting it to begin with, was the fact that my sister & I had some pretty harsh epidermis type reactions to artificial sweetners when we were in HS.

This is when my aunt gave us the lecture of a lifetime about these 'chemicals' and the way they affect new cell development. That all came flashing back when I saw that rash on Coley's face get angry right after he ate the pudding. I looked into it, and aspartame is actually pretty notorious for causing these type reactions, as well as fluctuations in BS, as well as other stuff. It all has to do with the way that it is metabolized (or not), and it's affects on the liver.

This is why I question whether it is actually less safe for people that may have liver damage or incompetences. Whatever the case...his rash slowly disappeared after taking it out, whether aspartame caused the rash or just aggrivated it I don't know...but I also noticed that his mood swings simmered down some and the distance between meals was lengthened. Coincidence? Maybe it was irritating more than his face?

I will say too, that after he refused the crystal light me & DH decided to drink it... After, I felt like I was going to ralph, and DH was popping tums for the intestinal pain...this was long before the rash too. So, who knows....

It's just another one of those things... So when Coley can say: "nope, that doesn't bother me." Then I'll think about testing it again. His appetite is fragile enough right now I just can't risk his 'growth' when there are other options...ya know?

Anyway...not sure I answered your question...

KJ

[laurie]

Ok Fred,
I've got a question for you............what is hydrolyzed corn? and is it safe?
Hunter's going through a lot right now (I havent been posting much about it in here, but talk with Kristen regularly)
We've gone back to square one now with the food trials, he's been having a lot of problems, including no desire to eat at most times.
Since we are "starting over" the doc said to try the ramen noodles. Its something Hunter likes, so he might "want" to eat. They dont want me to force him to eat, and if things dont start to get better they are thinking he may need to be NPO for about 6 months to let his body heal more.
Kristen looked at the ingred in the ramen and has questioned some, espec the hydrolyzed corn......what do you know about this??

Thanks, Laurie

[kristen]

Actually Laurie...there are enough other things in Ramen noodles like the dehydrated veggies and the soy that I just wouldn't trial it. There are plenty of other types of noodles that we know are safe...egg noodles, pasta, etc. He likes those too, right? Why play with fire?

But I would be interested in finding out what that stuff is though...

[ukbill]

Kirsten I'm with you all the way.

I will help with recipes and foods that I eat on a regular basis and I cook and eat a very wide range of foods from European to Japanese and everything in between!

I have no problem with eggs but Soy products (other than good quality Soy Sauce for some reason) also badly affect me. But not the same way as Fructose so maybe just a "normal" intolerance?

I have not had time to read all the comments above about sweeteners but I have to as usual ask the question WHY?

There is absolutely no reason to feed these things! NONE!

I will gladly discuss this with any doctor psychologist et all!

Give your HFI a chance, learn to avoid ANYTHING that tastes sweet it is your best and really your only defense!

[ukbill]

OK I understand the problem with getting enough calories for him to eat, I was hungry all of my life until I started to cook for myself!

IF I can help with recommending foods he can eat I am more than willing to help.

I need to know what you are cooking etc.

It should not be normally too difficult to get 1600 calories.. but then I am here and you are tearing your hair out trying to help him to grow so I really sympathize with you.

It is not easy.. is he HFI only or are there other alergies / disorders to take account of.

Yes Soya is nasty stuff for me to!

I do not mean to give offense only trying to help in my usual ham fisted way.

Best wishes and regards

Bill A.

PS at 13 I was second smallest in my class by 14 I was 3" taller than any of them! I am now 6'2"

So please do not worry too much ;-)

[esmee]

I have just discovered this very old thread and it is quite intersting, so I am bumping it up to the top again.

I have been plagued with a million food "sensitivities" forever, as have most HFI-ers. I have known that I could not eat whole grains and especially wheat for almost 15 years now, and was finally diagnosed with celiac 7 years ago (through intestinal biospy), but going off wheat and grains made absolutely no difference in all of my food and digestive problems. I never had the genetic testing for celiac, and they say if you have been off all wheat for a while you will not test positive anyway (which i don't understand if it is a genetic problem-but whatever!). perhaps the reason my villi were still flatten in a celiac-like manner even though i had not eaten wheat for 8 years prior to the biopsy, is because it was really due to the fructose in my diet?

anyways, now I am wondering if my gluten intolerance and my lactose intolerance could be a result of my fructose intolerance which caused the initial leaky-gut syndrome??? very interesting idea...and it makes me wonder if others with a million food sensitivities are also really suffering from some degree of fructose intolerance???

well, just some thoughts i wanted to share.

thanks for listening.

esmée ♥

[roman]

I don't think there is fructose in eggs - see www.fineli.fi/food.php?foodid=8513&lang=en
I think the US database has a typo - the same amount is repeated for all non-glucose sugars (lactose, galactose, etc.) Eggs are also very safe for Helena (no formal diagnosis as of yet however).

[roman]

Eggs do not have fructose. The US database, nutritiondata.self.com/facts/dairy-and-egg-products/111/2
must have an error. If you look at all the sugars, you'll see that there is glucose at 510 mg (that's a true value), but then there is sucrose, fructose, lactose, maltose and galactose, and they ALL are listed as having 267 mg. All of them, same weird amount? Not a chance. It's a typo, a database error. The Finnish database has eggs as containing nothing but glucose, here: www.fineli.fi/food.php?foodid=8513&lang=en

So don't panic, eggs do not have fructose. Roman

[ukbill]

Sorry this is a late night ramble.. but bear with me I think I might have something here.

Rather comes back to my comments about dodgy testing techniques and the ability (or lack of it) for testing equipment to reliably identify very small amounts of one hydrocarbon molecule from another.. ie Glucose (or other sugar) in a mix of starches (carbohydrates) which are essentially just longer chains of Glucose molecules.

We have to be suspicious of anything with a declared sugar content of greater than 1% in a none carbohydrate and 10% in a carbohydrate such as a starch, as there is likely to be a testing error rate of at least 5% and maybe as high as 10%!

We are lucky to have a built in repair mechanism.. our Livers are great things and unless really badly damaged can usually recover quite well, even though some of the scarring might be permanent.

Those of us with HFI have two levels to watch out for.. the first is obviously a level of Fructose that causes a reaction and makes us feel like hell for some time.

Perhaps more importantly once we are old enough to know what to avoid in our diet, is the level that causes more damage than our bodies can repair in a given time.

This is where I was slipping up until recently.. I though so long as I did not get a reaction or if I could "buffer " say the onion base of a curry with lots of plain boiled rice I would be fine.. Not so!

If we continue to eat more than we can repair then slowly (or quickly depending on dosage) we will start developing unexplained problems.. certainly I become more sensitive to anything sweet tasting, if you are lucky enough to have the self protecting aversion to sweet tastes, or you may simply become more picky on what you are eating.

But as the liver becomes more compromised then its ability to handle other difficult foods like Gluten and eggs, perhaps also other sugars like Lactose (I am taking an educated guess here) might become a problem too.

Also it is not impossible that other reported problems like allergies to dust mites and other allergies will very likely show themselves as our bodies try to find what is damaging it, so it might become more sensitive to everything?

I wonder if anyone has tested people with multiple allergies for FM??

Just a few ideas that at this time of night seem to make sense.

Certainly our guts will be suffering greatly even if we do not go hypoglycaemic, alternating between constipation and very watery poo, with cramps and bad gas and bloating I have experienced myself.

We can be accidentally poisoning ourselves from say a baked potato for example or certainly in Bread, or peanuts.. yes I used to eat them too, but always found peanut butter far too sweet for me.

I am thinking aloud so to speak (or type) here.

It comes back to our "tolerated" food list I suppose.

I think it needs updating to be two lists one is 100% HFI safe, if there is such a thing, and the second is a list of items that may occasionally be added into our diets to provide perhaps nutrients and more importantly, variety to our diet.

For example spinach, cabbage (green leaves only) Lentils etc... I for one would die of boredom if all I could eat was beef steak and white rice!

Since I have gone far more HFI safe in my diet I and finding "listening" to what my body needs is far easier and I can "hear" if that's the right analogy when things are not right quicker and feel what I need to put it right..

This might of course be all psychosomatic (all in the mind) but I don't care so long as I continue to feel better, healthier and happier than I have before.

Saying all this I am still recovering from a a 1/2 pint of bad beer last night. yes it serves me right.. I will know now not to try to drink a beer humorously called "Frosty Piddle" again!

Accurately named too.

I think this needs editing but do that tomorrow, typing single handed now as cat on one arm and half the keyboard.. past her bedtime i think ( and mine) keep smiling..