HFI vs FM? seeking advice from those experienced

[unx]

Hello everyone,

After some recent researching, I learned about FM and HFI. This seems to be the best place in moving forward to understand what's happening. I apologize for the length of this post. It seems that when people have reached this forum, they've already researched and exhausted all other options.

I am 29, male, and currently live in California. I have had health issues my entire life, although recently they have been impossible to withstand. Here's the list of symptoms below:

- 0 - 12 years of age - No problems, although sugar made me hyper. My mother told me that as a baby/small child, apple juice especially would make me incredibly hyper and kind of crazy. However, I loved sweet things and would eat fruit all the time.
- 12 - 17 - Deep, dark circles appear under eyes. Energy levels decreases. Lethargic.
- 17 - 26 - Varying degrees of acne problems. Sinus congestion practically chronic. Post-nasal drip begins. Dry lips. Always anxious.
- 26 - 29 - Circles become darkest. Lowest energy levels. Significant hair loss begins. Sinus congestion becomes unmanageable - need to do two sinus rinses a day plus nasal sprays. Frequent sinus infections. Itchy skin develops, requiring an anti-histamine every 48 hours. Happily, acne disappears for some reason.

Late last year, I could not function anymore. I had to take naps during the day. I was getting sick all the time. etc, etc

In trying to research my problems, I learned about candida. From December to March, I was on an incredibly strict candida diet. I improved a lot across the board, but still never felt normal. From there, I moved to a mono-diet, thinking it was food allergies (to everything seemingly). After that and experimenting with eating a lot of fruit, I was lead to learning about FM and HFI.

Here is what I know. Fruit and vegetables are the only source of fructose I've had in 6 months. It causes incredible bloating and gas. My circles get darker, I get very congested, and if I eat a lot, my energy level decreases noticeably. However, I react the exact same way to brown rice cakes and white potatoes. So, rhetorically, what's the connection? I have no idea.

Now, enter in another caveat. My mother and grandmother had digestion issues their entire lives. The symptoms were a bit different, but my mother has incredible energy problems and migraines. These days, she doesn't eat much fruit, but she reacts with bloating when she does. Other foods give her problems as well (whether the foods have fructose, I don't know). While she never experimented in order to understand her problems, her adult life has been one of poor health, migraines, and lethargy. My grandmother, although I know even less, was similar in the end.

I have read about HFI, and neither I nor my mother exhibit the extreme symptoms (vomiting, seizures, coma). We both had seemingly normal childhoods, and only experienced problems as we got older. Even today, I eat fruit, I bloat up and temporarily feel bad, but my body slowly moves on.

My question is this: Do you think this constitutes as HFI? Possibly it's a genetic weakness to developing FM? Possibly it's a genetic weakness to general digestion?

Thanks for any advice. I really appreciate it.

[ukbill]

HI UNX welcome to the board.

Firstly let lay one problem to rest. You do not have HFI at all!

There is no way an HFI person can ever get Hyper from drinking a fruit juice.

Yes I think you may have a severe FM and from your symptoms to me as a none Doctor it is shouting Thyroid! Loud and clear!

Have you had a Thyroid test?

Keep smiling..

Cherie's FM site is a place full of great specific FM advice and help go have a look

Take care

Bill A.

[unx]

May 5, 2013 13:24:23 GMT -5 ukbill said:

HI UNX welcome to the board.

Firstly let lay one problem to rest. You do not have HFI at all!

There is no way an HFI person can ever get Hyper from drinking a fruit juice.

Yes I think you may have a severe FM and from your symptoms to me as a none Doctor it is shouting Thyroid! Loud and clear!

Have you had a Thyroid test?

Keep smiling..

Cherie's FM site is a place full of great specific FM advice and help go have a look

Take care

Bill A.

I appreciate your reply! I no longer get hyper from fruit juice. That was only in my childhood. In fact, now I just get bloated and tired. However, I have no other immediate reaction than that.

One further item though...I just remembered my mother told me, that my cousin (my mother's sister) had the *exact* same reaction to apple juice as a child. Interesting.

I had a full blood test some 10 years ago, but there was nothing unusual in the results for my thyroid. At this point I would spend the money to have a more extensive test done.

I will do some research today. There does seem to be a connection between thyroid problems and glutten intolerance. And if there's a glutten intolerance, there's no reason I can't later develop a fructose intolerance either, huh? Perhaps the thyroid is the genetic connection as well. I will have to ask my mother is she's had anything tested as well.

[ukbill]

The Key things that point to Thyroid are Loss of hair and tired all the time.

Do you take significant amounts of artificial sweeteners.. like Sorbitol?

Because some of it looks like Sorbitol poisoning to me.
(Dry itchy skin and always anxious.) Sorbitol poisoning will start if you constantly take more than 2.5 grams per day! which is about 1 or 2 sticks of sugar free gum!

If I remember right a person is only able to metabolise 1.75g a day any more than that causes Dry itchy skin and promotes fungal infections and also problems with mucous membranous tissue as well, I might be wrong on this it is a couple of years since I read the results of the research.

You can find info on it on Sorbitol poisoning form Dr Tollans site.

HFI is life long and the reactions remain more or less identical through out life.

FM however can be set off as a result of many and various causes most of which are not understood or identified yet,

However I will bet a virus or a specific Bactria is largely responsible.. just not identified yet.

It is entirely possible that all your symptoms are as a result of really bad FM.. because if you have this you are not able to digest food properly and so nutrients, minerals and vitamins are not adsorbed properly.

Charlie's FM site can help you a lot I think.

Have you had the Hydrogen breath test done?

I do not normally recommend it because its so very dangerous for an HFI person however there is no chance you have HFI so it should be safe for you.

Bill A.

[charlie]

Hi

I agree with Bill, doesn't sound like hfi but could well be another sugar malabsorption problem. You sound very like my daughter as she goes off the scale hyper after sucrose (and a lot of frui and veg have sucrose too) will get back better info on this in few weeks after she is having some more tests.

Breath testing may be way forward but these need to be done accurately or may give wrong info. Or as you are adult a strict elimination diet may be way forward if you look on my pro board it runs through how to do it. There seem to be multiple sugar malabsorption sufferers who present with very similar symptoms but no clear answers but once you find which foods suit then things improve a lot but you do have to stick it out for a long time.

All the best

Cherie. (aka Charlie - Bills dyslexia seems to have rechristened me).........

[unx]

May 6, 2013 5:34:45 GMT -5 charlie said:

Hi

I agree with Bill, doesn't sound like hfi but could well be another sugar malabsorption problem. You sound very like my daughter as she goes off the scale hyper after sucrose (and a lot of frui and veg have sucrose too) will get back better info on this in few weeks after she is having some more tests.

Breath testing may be way forward but these need to be done accurately or may give wrong info. Or as you are adult a strict elimination diet may be way forward if you look on my pro board it runs through how to do it. There seem to be multiple sugar malabsorption sufferers who present with very similar symptoms but no clear answers but once you find which foods suit then things improve a lot but you do have to stick it out for a long time.

All the best

Cherie. (aka Charlie - Bills dyslexia seems to have rechristened me).........

I have been on an conscious elimination diet for about 2-3 months now. Truly, the only carb I do well with are sweet potatoes (I do horrible with white potatoes). I don't have problems with eggs and meat, and most vegetables (except ones like peppers and tomatoes) are fine. But if I try to introduce any fruit or rice, I respond badly. I'm only realizing this now. I figured fruit was the safest food, so I kept trying to reintroduce it.

If my body doesn't like something, I immediately get a post-nasal drip mucous reaction. I didn't realize how significant that connection was until I read your responses. I will check out your proboard today.

[unx]

May 6, 2013 0:30:15 GMT -5 ukbill said:

The Key things that point to Thyroid are Loss of hair and tired all the time.

Do you take significant amounts of artificial sweeteners.. like Sorbitol?

Because some of it looks like Sorbitol poisoning to me.
(Dry itchy skin and always anxious.) Sorbitol poisoning will start if you constantly take more than 2.5 grams per day! which is about 1 or 2 sticks of sugar free gum!

If I remember right a person is only able to metabolise 1.75g a day any more than that causes Dry itchy skin and promotes fungal infections and also problems with mucous membranous tissue as well, I might be wrong on this it is a couple of years since I read the results of the research.

You can find info on it on Sorbitol poisoning form Dr Tollans site.

HFI is life long and the reactions remain more or less identical through out life.

FM however can be set off as a result of many and various causes most of which are not understood or identified yet,

However I will bet a virus or a specific Bactria is largely responsible.. just not identified yet.

It is entirely possible that all your symptoms are as a result of really bad FM.. because if you have this you are not able to digest food properly and so nutrients, minerals and vitamins are not adsorbed properly.

Charlie's FM site can help you a lot I think.

Have you had the Hydrogen breath test done?

I do not normally recommend it because its so very dangerous for an HFI person however there is no chance you have HFI so it should be safe for you.

Bill A.

I started this journey on a strict candida diet. I'll be honest, when I found foods that I did well with, I had more energy than I could remember having in years. And the hairloss essentially stopped...for a while. It's when I reintroduce foods that both problems return. I ingested a lot of fruit before this past weekend, and I paid for it in both respects. Only today do I feel a little better.

I don't use Sorbitol. Really, except for a year or two in college, I've eaten incredibly healthy my entire life. I've always had health problems, so I had to eat a healthy diet just to get through the week. So I've never added sugar to anything, and hardly ever drank sugary drinks.

"FM however can be set off as a result of many and various causes most of which are not understood or identified yet, However I will bet a virus or a specific Bactria is largely responsible.. just not identified yet."

I think you might be interested in this. I mentioned at the age of 12 was when my problems started. What I didn't say is that the catalyst was a time that I became incredibly sick for almost 4 weeks. I remember it. My mother even documented it. I contracted some virus and was put on antibiotics. During this time, I developed dark circles that never went away. And I was sick more and lacked energy from that point forward in my life. Correlation or not, I have no idea. I'll have to ask my mother what I was specifically sick with. Christ...I even developed painful gas issues after that...I just remembered that.

Well the question is now...how do I proceed? How do I get better? I can't seem to handle most any carbs or fruit. Maybe I should cut out vegetables. I'll have to do a lot of research on this.

[colormist]

Hi UNX,
It doesn't sound like Hereditary Fructose Intolerance (HFI) at all (at least not what most of us are familiar with--those of us with HFI would have gone starving for days before even thinking about eating ripe fruit). My closest guess would be that you have Fructose Malabsorption (FM), but I'm not a doctor. I am hoping you have insurance, because I think you should seriously go see a doctor to get their professional advice. If it is FM, then a dietitian will be a HUGE help.

Speaking as a person stuck with HFI, it's amazing how much fructose sneaks into one's diet. Toothpaste, pills, gum, mouthwash, dental floss, chapstick, cheese, tuna, plain chicken breast--these are all things that made me yell "WTF!?" in a grocery store and get very angry. That's not even mentioning the litany of other products that you would expect to have fructose in them--like vegetables, fruit, and every sugary-sweet thing ever.

I looked up the Candida Elimination diet and I don't think it's strict enough to help you narrow down what's causing your current condition. If you serious about the FM diagnosis, you might try Charlie's elimination diet: www.fructosemalabsorb.proboards.com/thread/46/elimination-diet

It's a very specific diet and you're not going to be very happy while eating. It helps to think of food as energy instead of food and delicious fun yummy stuff. You should definitely keep a food diary and maybe even keep the food labels if possible.

Be sure any foods you buy are additive free. No chicken/vegetable broth or brine or natural flavors, etc.

Good luck.

[unx]

May 6, 2013 13:08:15 GMT -5 colormist said:

Hi UNX,
It doesn't sound like Hereditary Fructose Intolerance (HFI) at all (at least not what most of us are familiar with--those of us with HFI would have gone starving for days before even thinking about eating ripe fruit). My closest guess would be that you have Fructose Malabsorption (FM), but I'm not a doctor. I am hoping you have insurance, because I think you should seriously go see a doctor to get their professional advice. If it is FM, then a dietitian will be a HUGE help.

Speaking as a person stuck with HFI, it's amazing how much fructose sneaks into one's diet. Toothpaste, pills, gum, mouthwash, dental floss, chapstick, cheese, tuna, plain chicken breast--these are all things that made me yell "WTF!?" in a grocery store and get very angry. That's not even mentioning the litany of other products that you would expect to have fructose in them--like vegetables, fruit, and every sugary-sweet thing ever.

I looked up the Candida Elimination diet and I don't think it's strict enough to help you narrow down what's causing your current condition. If you serious about the FM diagnosis, you might try Charlie's elimination diet: www.fructosemalabsorb.proboards.com/thread/46/elimination-diet

It's a very specific diet and you're not going to be very happy while eating. It helps to think of food as energy instead of food and delicious fun yummy stuff. You should definitely keep a food diary and maybe even keep the food labels if possible.

Be sure any foods you buy are additive free. No chicken/vegetable broth or brine or natural flavors, etc.

Good luck.

I've never had to analyze the ingredients to that degree, and I hope I don't have to, but since I've been on a restricted diet, it has been quite amazing the amount of sugar (and other things) that go in to basic foods. I have nothing but sympathy for those with HFI.

The candida diet I was on was quite strict. For a while, I was only eating (organic when possible) brown rice, meats, fruits, and vegetables. But after still having problems, I have cut out brown rice and now even fruit. So, I will try the elimination diet as soon as possible. As long as I can eat enough to feel full, it should not be any harder for me.

Thanks for the advice!

[charlie]

You should look into a general disaccharide absorption problem, you mentioned that you started to get bad after a bad illness, this may have damaged your small intestinal villi which has affected the way your body deals with multiple sugar absorptions. it may be that you are having a problem with fructose, sucrose but also starches (ie in potatoes, riceetc) and this can be helped with enzyme replacements you take with your food, but you do need do need to get checked out medically for this. One of the enzymes is sucrase, the other one is isogest i think its called. Look up www.csidinfo.com for more info on this.
The elimination diet is doable but you must make sure you don't have much to do when you do it at least for the first week as you will have very limited energy for the first few days but if you can stick it out then things should get alot better, I did it a long time ago to help detox and made the mistake of going to the gym too............ big mistake, I spent an hour in the loo with the room coming in and out of focus.............. But once I got through that then i felt alot better.

[unx]

May 7, 2013 3:25:29 GMT -5 charlie said:

You should look into a general disaccharide absorption problem, you mentioned that you started to get bad after a bad illness, this may have damaged your small intestinal villi which has affected the way your body deals with multiple sugar absorptions. it may be that you are having a problem with fructose, sucrose but also starches (ie in potatoes, riceetc) and this can be helped with enzyme replacements you take with your food, but you do need do need to get checked out medically for this. One of the enzymes is sucrase, the other one is isogest i think its called. Look up www.csidinfo.com for more info on this.
The elimination diet is doable but you must make sure you don't have much to do when you do it at least for the first week as you will have very limited energy for the first few days but if you can stick it out then things should get alot better, I did it a long time ago to help detox and made the mistake of going to the gym too............ big mistake, I spent an hour in the loo with the room coming in and out of focus.............. But once I got through that then i felt alot better.

Your analysis is very interesting. It almost makes feel just as lost as before. You mentioned a medical examination, but what specialty should I seek out for expertise and testing?

It's interesting how I don't remember feeling this bad in the past. But perhaps in trying to eat "safe" foods, I'm actually eating the exact foods I react against. Today, I attempted to eat "gluten free" white rice all day, as this is something I haven't done for months. Every time, it immediately made me feel quite tired and caused a sinus mucous reaction. I will go back to sweet potatoes and simple vegetables for a time, just to rebalance myself, and perhaps seek out these enzymes. I'd almost like to see a specialist first though.

Thanks for the advice on the elimination diet. I do go to the gym regularly as well.

[charlie]

Hi, sorry to confuse you ............ unfortunately this subject for most turns out to be a minefield as there often seems to be no one diagnosis. We have christened it "The Grey Area Club"on this board - not to be confused with the Fifty Shades of Gray Club

Right where to start. You will find your body may start to react more to smaller amounts of what doesn't suit as you clear your system more as when you are on a "normal" diet you end up probably not noticing alot of the symptoms, especially if you have been like that for as long as you remember. Then you clear the irritants out of your system and start to feel alot better and start to recognise the effect these things were having on you, then every time you eat something wrong you start to recognise the symptoms quicker.

I am the parent of a sufferer so it took even longer because although Megs didn't look well, and didn't feel well I had to try and work out what and how she was feeling so now I spot them instantly and can start to teach her what it is all about. Interesting about your nasal drip as that is also an early sign in her. Obviously the mucous membranes must get inflamed quickly, they think with meg it is a mild allergic reaction and to try piriton now when she has a reaction and it certainly helped on the last one. Obviously before trying this check with your medics first that that is a safe option for you.

Who do you see? You are in California so big shout out to anyone in that area for advise on who they have seen successfully is your first stop, or google your local hospitals and see what specialists they have, you need a good metabolic specialist not a gastrointestinal one to get a fuller picture. I realise in America there are insurance issues so don't want to pry but check you have enough cover.

The sweet potato being OK is confusing me alot so will get back to you on that one but yes do think you should look down the starch options too if rice is a problem.

But also factor into your picture the combination effect of foods over a few days so you will need to keep an obsessive diary for at least a month so you can cross and back reference all foods as you may be ok with one portion of whatever is wrong but that could build up to a reaction a couple of days later. Slowly you may see a pattern emerging but you do need to write it down as brain fog can set in very quickly with these conditions.

As I doubt very much you have HFI the breath test route may be your best answer first, again I go through all that on the FM site so won't go into that as it isn't a safe test for HFI. It may make you feel rough and reactive for a while after so again clear the diary but it may help isolate the type of sugars you are reacting too, also the time it takes for the reaction to kick in can be an indication of which part of the digestive system isn't absorbing properly ie within an hour is the stomach, then a bit longer will be the small intestines, even longer will be the large intestines. Later than 3 to 4 hours is later in the digestive system once it should have passed through the bowels.

Hope all this makes sense.

Charlie

[charlie]

OK, according to nutrition data: sweet potatoes, boiled without skin:

Usually measured per 100g
Carbohydrates
Carbohydrate58.1g19%
Dietary Fiber8.2g33%
Starch17.1g
Sugars18.8g
Sucrose4690mg
Glucose1771mg
Fructose1410mg
Lactose0.0mg
Maltose10956mg
Galactose0.0mg

Read More nutritiondata.self.com/facts/vegetables-and-vegetable-products/2948/2#ixzz2Shf8teTr

So basically very high fructose so should be having you really ill with HFI, Also high in starch and sucrose so tending to say not sucrose intolerance. However FM works on the balance of fructose to glucose in the low fodmap diet and as long as there is equal or more glucose the fructose latches on to it to get absorbed through the villi so that may explain why you can have it.

[ukbill]

"Cherie. (aka Charlie - Bills dyslexia seems to have rechristened me)........."
Opps

Sorry..

Dyslexia rules KO

Sometimes typing forum posts before bed so eyes not focusing and a bit more crossed than usual.. along with a extreme case of Dyslexia as well not helping.

If I make mistaks please forgive me.. I also have to replace the words I really want to use with alternatives when spell checker is of no help (frequently), so sometimes posts are not fully re-edited to reflect the replaced word.. making me look less fluent with my mother tongue than I am.

[unx]

May 8, 2013 3:35:38 GMT -5 charlie said:

Hi, sorry to confuse you ............ unfortunately this subject for most turns out to be a minefield as there often seems to be no one diagnosis. We have christened it "The Grey Area Club"on this board - not to be confused with the Fifty Shades of Gray Club

Right where to start. You will find your body may start to react more to smaller amounts of what doesn't suit as you clear your system more as when you are on a "normal" diet you end up probably not noticing alot of the symptoms, especially if you have been like that for as long as you remember. Then you clear the irritants out of your system and start to feel alot better and start to recognise the effect these things were having on you, then every time you eat something wrong you start to recognise the symptoms quicker.

I am the parent of a sufferer so it took even longer because although Megs didn't look well, and didn't feel well I had to try and work out what and how she was feeling so now I spot them instantly and can start to teach her what it is all about. Interesting about your nasal drip as that is also an early sign in her. Obviously the mucous membranes must get inflamed quickly, they think with meg it is a mild allergic reaction and to try piriton now when she has a reaction and it certainly helped on the last one. Obviously before trying this check with your medics first that that is a safe option for you.

Who do you see? You are in California so big shout out to anyone in that area for advise on who they have seen successfully is your first stop, or google your local hospitals and see what specialists they have, you need a good metabolic specialist not a gastrointestinal one to get a fuller picture. I realise in America there are insurance issues so don't want to pry but check you have enough cover.

The sweet potato being OK is confusing me alot so will get back to you on that one but yes do think you should look down the starch options too if rice is a problem.

But also factor into your picture the combination effect of foods over a few days so you will need to keep an obsessive diary for at least a month so you can cross and back reference all foods as you may be ok with one portion of whatever is wrong but that could build up to a reaction a couple of days later. Slowly you may see a pattern emerging but you do need to write it down as brain fog can set in very quickly with these conditions.

As I doubt very much you have HFI the breath test route may be your best answer first, again I go through all that on the FM site so won't go into that as it isn't a safe test for HFI. It may make you feel rough and reactive for a while after so again clear the diary but it may help isolate the type of sugars you are reacting too, also the time it takes for the reaction to kick in can be an indication of which part of the digestive system isn't absorbing properly ie within an hour is the stomach, then a bit longer will be the small intestines, even longer will be the large intestines. Later than 3 to 4 hours is later in the digestive system once it should have passed through the bowels.

Hope all this makes sense.

Charlie

No, I'm greatly appreciative for the help, overwhelming as it may be. I feel like every week I make a "discovery" that provides an answer to my problems. So, the gray area club is definitely where I belong.

I essentially have been trying to figure out what I react to for a long period of time now. I seem to always go back to sweet potatoes, since that's where I feel the most normal. Every time I added something new in the past, I feel a reaction and then backpedal to a point where I feel normal, and then try again.

I could believe it to be an allergic situation, and for a long period of time, I thought this was the cause. But, at the same time, I would have to be allergic to everything. Also, the food pattern fits a problem with a sugar enzyme too. I figured my body knows there's a problem and is trying to tell me in different ways that I'm broken. Regardless, I'm on a regular antihistamine for my skin itching anyway. Now that I'm cutting out fruit, I'm interested to see if the itching wanes a bit.

The sweet potato situation is quite bizarre. The reason is that white rice and white potatoes cause a reaction. The glucose levels are higher than the fructose levels in these two, yet I'm more balanced with sweet potatoes. The question I have then is, why are foods high in glucose and lower in fructose causing me problems? Perhaps my whole system is so out of balance? If I reset it and avoid foods high in fructose, I wonder what would happen.

Also, the reaction to certain foods is interesting too. I'm curious what your daughter goes through compared to me. In general, if I react to something, it is a three step process.
Step 1: Immediate post-nasal drip, probably with a temporary runny nose.
Step 2: Bloating with gas within an hour.
Step 3: Extreme lower abdomen bloating later on, with constipation. Also, I tend to wake up in the middle of the night with my right nostril completely blocked.
Bonus step: I do a sinus rinse morning and night. If I react to something, I general blow out a ton of mucous. In the morning, I often get small green flakes.

The severity of each step is dependent on what I'm eating. Fruit causes step 2 and 3 to be extreme. Brown Rice cakes cause step 1 and 2 to be extreme. White rice affects more step 1 and 3. And as long as something doesn't cause constipation, it moves out of my system within a 48 hours.

So, I need to do more research about FM and find a good metabolic specialist. They exist in LA, but I'm going to pay for it. I don't have insurance right now, but that's alright. The first step will be to get the hydrogen breathe test completed I think, and go from there.