Another newbie...I think

[itsme]

Hello Everyone,

Wow...where to begin,so many things racing through my mind..

Let's start with the obvious. I want to go to my GP to have my blood tested for Fructose Intolerance, bc I suspect fructose to be a rootcause (or one of them anyway) for my many issues/metabolic disregulations.

However, other than Aldolase (B) to be tested and ALT , I don't know what else could be good indicators as I'm not at liberty to go see (another) endocrinologist or other specialist in the hospital. On a sidenote, my ALT has always been mildly elevated every bloodwork I have for over 12 years. (My GP says it's normal and that this happens in some people,however I wonder if it could be from mild inflammation from fructose..)

What else to possibly test?

In a couple of weeks I'm almost 40, I have been dealing with digestive issues/IBS&healing diets for 10+ years already, which basically means that I'm eating lowcarb (carbs in ketogenic range) for years now. Due to sudden plant toxin intolerances, oxalates, I mainly ate polyol type veggies as I wasn't eating (free) fructose veggies bc they already gave me problems. The sugar alcohol veggies made me mildly bloated and fatigued after eating, which made me look into low Fodmap oxalate-free veggies. So, since it was also getting warmer outside, I decided to opt either for some radishes,peeled&deseeded cucumber, Romaine lettuce or canned green beans......boy was that a mistake!!!

It seems like my body is saying: "Now that you're almost 40, we're going to step it up a notch!"

Ever since I began eating them it feels as if my body is totally out of whack; for a couple of hours after I experience severe hypoglycemia. Overall, ever since I suffer frequent bouts of nausea, vision disturbances (sorry for typos as I have difficulty looking/reading now),mood swings (sudden bouts of panic attacks&anxiety for no reason), brainfog, IBS symptoms, feels like my blood sugar is allover the place/uncontrollable, still fatigued when I wake in the morning...

I doubt that this is 'only' caused bc of Fructose Malabsorption.

I've been avidly reading various threads on here for the past couple of days, maybe I've missed it (I blame my eyes ) but I couldn't find any safelist of fructose-free foods...the only thing I can think of, is that unprocessed animal foods/proteins are fructose-free.....so basically a Carnivore Diet.

How do your daily days of eating look like....what do you eat? Do some of you follow a Carnivore Diet?

I've been diagnosed with MS,somewhere in my 30's but suffered my first and worst attack when I was 18.

Now, I don't really believe in autoimmune conditions, but I do believe the complications/issues are very real. This makes me ponder if my MS symptoms were actually triggered by fructose....since from my teens I'd developed a sweet tooth and especially in my 20's I used to live off fructose fruits&veggies and other lowfat foods which were typically filled with HFCS. I don't know what it is,but fructose ingestion seems to be like (temporary) crack for my brain all the while demolishing my body.

I'll keep it at that for now....I don't want to overwhelm and/or scare you away.

[itsme]

Nobody has anything to say?

Ok ...are there perhaps more people who dealt with blood sugar problems and/or high iron/hemichromatosis prior to stop eating fructose &polyols?...and for the women,this especially also disrupting the menstrual cycle.

I've stopped eating any plantfoods and eat lower iron lean animal proteins and I seem to slowly crawl back up again. (though very low calories bc of nausea doesn't help)

[ukbill]

Sorry only just seen your posts.

Firstly HFI is a genetic condition and we are affected from birth so as your problems have only occurred in later life (30+) it sounds to me more like severe Fructose Malabsorption than HFI.

FM affects about 45% of the worlds population to some degree or other. IF you know 2 people with IBS then you certainly know at least one person with FM.

No one with HFI can ever tolerate Sucrose sugar (which is 50% Fructose) or Fructose or Sorbitol a "sweetener" that is claimed to be zero sugar but in fact is made from Fructose and is converted back into Fructose by the Liver.

I would recommend a Genetic test 1st to ensure you do not have something else.

Fructose intolerance / Fructosemia and HFI are totally different conditions. Frequently confused however, they confused me for many years too.

FI / Fructosemia is a rare condition usually caused later in life due to either physical liver damage or as a result of an infection of the liver, that has damaged it physically.

Other than advising on a safe diet (which is essentially totally Sugar, Fruit and vegetable free) there is little we can help you with I suspect.

We all follow more or less a carnivore diet, with added safe carbs like Rice and Pasta and frozen ready made mashed potatoes.

Following a vegetarian or worse still the VEGAN diet is a slow painful way to commit suicide if you have HFI and most likely FI / Fructosemia as well

Fructose is a poison to everyone and causes nearly as much damage to one's liver as alcohol, 1:8 people now have NASH (none alcoholic Fatty Liver Disease) as a result of all the HFCS and fructose pumped into foods that have no business having any added sugars in them at all.

I hope this helps and you find out what is causing you these problems.

Certainly HFI is not the cause otherwise you wold never have ever been able to eat any fruit for a start.

Keep smiling and eat safe

[itsme]

Hi ukbill,

Thanks for your reply.

As you've already said, I doubt that I suffer from HFI but I think I could possibly been suffering from Fructosemia throughout the years (given my experiences throughout my life) and it seems that my body now has had enough of it!
My liver has definitely been through the mangler throughout the years. My ALT has been elevated for 10+ years.

Looking back it kinda makes sense...as a child I grew up in a bakery. (lol...the irony). People always half-jokingly asked me if I ate lots of pies, but truth was,that I didn't care much about pie and sweet pastries. I only ate some,just like other people, on special occasions/festivities. I wasn't much of a fruit eater either. I lived off savory pastries like croissant with cheese,ham etc. and I loved drinking cold milk. My diet would mainly consist of meats,eggs,fat,dairy,white flour,potatos and some vegetables that my mom or grandma would make for dinner.
It was as I progressed through life that I started to grow a sweet tooth and my food intolerances started to grow.

The past few days I've been on an actual nocarb (mixed) carnivore diet, due to severe nausea,dizziness and blood sugar swings (hypoglycemia)...and I just couldn't get any plantfood down anymore.
I suspect my pancreas and liver are shot,leaving me to built up a tolerance towards fat (amount and different types) again. I think the fructose/fructand/polyols, plant toxins have stacked up in my liver and who knows where else and it also seems that free iron (unopposed by copper) has rampaged, leading to Sibo.
I hope in the future that I will be able to tolerate&thrive on my 'childhood diet foods' again, as gluten/cowdairy and eggs have been off the table for a long time.

I know that regular potato is (almost) fructose-free,but what about various beans? (Honestly, I don't like them very much but they could make a good source of soluble fiber. Though they're high in lectins,just like potatos).

[nancy]

I just read a research article yesterday that stated that those of us who have multiple single mutations for HFI can wind up eventually having the full blown disorder. It just takes us longer to develop the disorder, depending on how much fructose we ingest over the years. I actually think there are more of us out there than doctors realize.

[ukbill]

Nancy that is very true at least 10x those who have been diagnosed assuming we do not get fed formula food from birth. in which case the likelihood of making it through the 1st few weeks is slender.

It seems at long last the damaging effects of manufactured foods (that most of us live on for all our food these days) is slowly becoming known. I am certain that the multi National food manufacturers know this but then who are you going to sue? Which companies products caused your diabetes?

Fructose is certainly a poison if consumed every day. Our bodies have not evolved to handle Fructose the same way as we handle Glucose or starches. Almost all the processing of Fructose happens in the Liver exactly the same as alcohol. Some fructose is handled in the Intestines and Kidneys hence the gastro issues that in many people are the 1st signs.
Traditionally the only time of year people came by any quantities of Fructose (before industrialisation) was during the late Summer and Autumn months (fall) when evolutionally wise it was a very good idea to eat too much food and put weight on to build up reserves to get us through eh Winter and early spring months until food was bountiful again.

This inbuilt system still works as it should however now we have Fructose all the year around and stuffed into every type of food possible.. just to make us over eat! It also means our livers never gat any chance to recover from the excesses of the Fruit season.

AS I have said on many occasions if the diet works.. then stick with it. It is by far a much safer diet than for example being Vegan.

The main problem with the Vegan diet is the total lack of nutrients and minerals.
People read the analysis of a food (say spinach) and think 100g of spinach will give them (Spinach nutritional information · 23 calories · 2.86 g protein · 0.39 g fat · 3.63 g carbohydrates · 2.2 g fiber · 0.42 g sugar · 99 mg calcium · 2.71)
However this is calculated as dry matter not as it is eaten! This fact is always missed and incorrectly quoted! Spinach is about 98% water! So to get 2.86g of Protein from it you actually have to eat 980g of raw spinach! Unless you have 4 stomachs (like a Cow or Goat) the amount even then that you will digest and adsorb will be a fraction of what is available to a ruminant or analytical machine.

I have no objection to Vegetarians the diet is quite healthy (ish) although multi vitamins are still advised for people on that diet. However there are no vitamins needed if you eat a balanced diet that includes Meat, Fish eggs and vegetables. The main advantage of eating vegetables is the fibre they contain than aids the smooth running of the intestines, again something we have evolved to have in our diet.
About the only vitamin not usually found in meat is vitamin C this we need to take as a supplement.

[itsme]

Jul 11, 2022 20:59:20 GMT -5 nancy said:

I just read a research article yesterday that stated that those of us who have multiple single mutations for HFI can wind up eventually having the full blown disorder. It just takes us longer to develop the disorder, depending on how much fructose we ingest over the years. I actually think there are more of us out there than doctors realize.

Interesting...would those single mutations all be from the ALDOB gene or are there others as well?

I've done a 23andme test years ago,but Im not sure if it (already) tested the aldob gene.

I remember when I had a colonoscopy in my late 20's, I had to drink some kind of laxative prior to it. I don't know what it was sweetened with, but it tasted so sweet....the more I drank of it,the more I felt I was going to puke and pass out, so halfway I just quit drinking. I saw that the colonoscopist made a remark on the resultpaper, about how dangerously low my heartbeat dropped during the exam. I've always felt that this was bc of that nasty laxative drink.

Then years after, I did almost 2 year of a Ray Peat (inspired) diet for my health....in retrospect I think it only destroyed more of my health.  To think that,that 'diet' would be the nail in the coffin of so many people here...

[antonia]

HFI is not a no carb or low carb diet. HFIers can eat glucose based carbohydrates (unsweetened and refined grains and starches) as well as lactose sugar (unsweetened dairy). Have you looked into CSID? This would involve the inability to digest certain sugars as well as starches, and hypoglycemia can occur as a symptom. If you don’t tolerate HFI safe carbohydrates and don’t have an aversion to sweets, I would look into CSID over HFI. Enzymes that aid in the digestion of carbohydrates can be taken for CSID. I’ve also heard there are some that suffer from both FM and CSID at the same time. A ketogenic or no carb diet would also be an effective treatment if enzymes are not taken, or are not effective.

[itsme]

Jul 13, 2022 0:35:03 GMT -5 antonia said:

HFI is not a no carb or low carb diet. HFIers can eat glucose based carbohydrates (unsweetened and refined grains and starches) as well as lactose sugar (unsweetened dairy). Have you looked into CSID? This would involve the inability to digest certain sugars as well as starches, and hypoglycemia can occur as a symptom. If you don’t tolerate HFI safe carbohydrates and don’t have an aversion to sweets, I would look into CSID over HFI. Enzymes that aid in the digestion of carbohydrates can be taken for CSID. I’ve also heard there are some that suffer from both FM and CSID at the same time. A ketogenic or no carb diet would also be an effective treatment if enzymes are not taken, or are not effective.

Thank you, I've never looked into it. However other types of carbs like lactose and starch have never had that effect on me like fructose (sucrose and it's deravatives polyols) had on me. I've been diagnosed gluten-intolerant/celiac for many years now, so eating grains isn't an option.

Lipase/pancreas recently had been tested which turned out within the (mid)range, so it would indicate that my pancreas is making sufficient digestive enzymes.

Right now there isn't anything which I seem to tolerate as far as carbs, bc it seems my entire digestive system/metabolism is turned upside down. So, I'm currently eating some lean animal proteins with moderate fat and I thankfully slowly start feeling a bit more alive again. However fiber(& catbs) remains a questionable thing for me (I certainly don't crave any veggies at the moment). Lots of carnivores claim we don't need fiber for good health, Ray Peat also claims that fiber is irritating to the gut....however there are also many who claim that fiber is needed for good gut/immune health.

It's obvious to me now that I had (have?) a major overgrowth/sibo despite of years on guthealing protocols, so it seems that something is troubling and caused this overgrowth and everything to go off track. Since I'd already been eating lowcarb/keto for years, the only thing that comes to my mind is the little amount of fructose left in the veggies (going by several experiences in my past). I want to built things up right this time...without food sneakily damaging me.

[antonia]

I believe CSID can only be diagnosed via a scope/biopsy. Likewise, Adolase B activity, in relation to HFI, can only be determined via a liver biopsy. First step in determining HFI would be a genetic blood test for HFI, since liver biopsy is so invasive. A positive HFI test is diagnostic where as a negative HFI test is simply inconclusive since not all mutations are yet know.

My daughter is HFI as well as gluten-free. There are plenty of gluten free grains and starches she eats regularly without any trouble at all. Yes, SIBO could also be the reason you don’t do well with any form of carbs. As well as yeast overgrowth. Starving microbial overgrowth by eliminating fermentable carbohydrates is one way to treat it, but I’m not sure how long you would have to stay completely carb free. True ketogenic diet would eliminate vegetables as well. Keto has become a fad diet, and many of the diets and keto foods available out there now actually contain quite a lot of carbs including fermentable fibers and sugar alcohols or other non nutritive sweeteners.

I wish you luck on finding an answer. It’s certainly possible to have more than one thing going on which can muddy the waters. Many twists and turns to figuring out my daughter’s health.

[itsme]

Jul 13, 2022 18:19:00 GMT -5 antonia said:

I believe CSID can only be diagnosed via a scope/biopsy. Likewise, Adolase B activity, in relation to HFI, can only be determined via a liver biopsy. First step in determining HFI would be a genetic blood test for HFI, since liver biopsy is so invasive. A positive HFI test is diagnostic where as a negative HFI test is simply inconclusive since not all mutations are yet know.

My daughter is HFI as well as gluten-free. There are plenty of gluten free grains and starches she eats regularly without any trouble at all. Yes, SIBO could also be the reason you don’t do well with any form of carbs. As well as yeast overgrowth. Starving microbial overgrowth by eliminating fermentable carbohydrates is one way to treat it, but I’m not sure how long you would have to stay completely carb free. True ketogenic diet would eliminate vegetables as well. Keto has become a fad diet, and many of the diets and keto foods available out there now actually contain quite a lot of carbs including fermentable fibers and sugar alcohols or other non nutritive sweeteners.

I wish you luck on finding an answer. It’s certainly possible to have more than one thing going on which can muddy the waters. Many twists and turns to figuring out my daughter’s health.

Oh God no.....I don't want to have a biopsy done, I've been through the ringer enough in my life. I don't suspect actual HFI for myself, but general Fructose Intolerance might not be off the table.

Regardless of tests, diagnoses etc. , ultimately I'm the one who decided what I put in my mouth/body, so I could stick to a no/very low fructose plan anyway.

Yes, there are indeed several glutenfree grains....I'm personally just not sure if I would want to have them in my diet. I've been eating very lowcarb for many years already, so I'm not really craving carbs. I'd say if I were to tolerate a low-fructose carb again, I choose potatos...maybe also white rice but it feels like kind of a 'meh' bland food to me. (I apologize to all the Asians who might be here ). Lactose would also give me more options when it comes to dairy, however since fructose and lactose are processed along the same pathway, I'm not so sure I ever will.

However I'm not sure if potatos will ever (regularly) be in the cards for me bc of the nightshades/lectins (peeling and high pressure cooking helps deminish them), my immune system might still not be happy with them.

Actually, keto doesn't eliminate all vegetables, only the higher carb and starchy ones.   I agree, keto originally was a medical diet to control epilepsy. However as soon as someone sees an opportunity,for any diet, to make money off it (usually through the weightloss industry), it becomes muddled with all these processed Frankensteinfoods which 'are allowed' on the diet. It leaves a lot of people eating low quality food/proteins,inflammatory fats etc. I always stuck to grassfed meats, organic vegetables and fats. Still, I'm living proof that it doesn't cure all either.

Thank you! I wish you and your daughters health (journey) all the best too.

[antonia]

Even low carb vegetables will contain fibers that may be fermentable by overgrowth bacteria. By fermentable, I mean that it feeds bacteria/yeast and keeps them alive. Probably best you speak with a good, GI doctor, however, about a clinical, ketogenic diet to treat SIBO.

I’m not sure what pathway you are referring to with lactose, but lactose (a disaccharide of glucose and galactose) does not require Adolase B to be processed by the liver. This is why it’s a safe sugar for HFI. You may be referring to the digestive process? I think you would really receive better help from a fructose malabsorption/FM or SIBO group. HFI has nothing to do with digestion and everything to do with the liver. Lactose is avoided as a fermentable carbohydrate in the FM diet (referred to as the Low FODMAP diet). I know of a very good FM group that discusses FM as it relates to both SIBO and yeast overgrowth, all three do seem to go hand in hand. It is a pediatric group, but I’m sure they would not mind you listening in. Or, I’m sure there are other great SIBO/FM groups out there. Before finding HFI, I thought my daughter suffered from FM, and learned quite a lot about it, and related digestive conditions. Let me know if you’d like some of those resources.

[itsme]

Jul 14, 2022 12:00:35 GMT -5 antonia said:

Even low carb vegetables will contain fibers that may be fermentable by overgrowth bacteria. By fermentable, I mean that it feeds bacteria/yeast and keeps them alive. Probably best you speak with a good, GI doctor, however, about a clinical, ketogenic diet to treat SIBO.

I’m not sure what pathway you are referring to with lactose, but lactose (a disaccharide of glucose and galactose) does not require Adolase B to be processed by the liver. This is why it’s a safe sugar for HFI. You may be referring to the digestive process? I think you would really receive better help from a fructose malabsorption/FM or SIBO group. HFI has nothing to do with digestion and everything to do with the liver. Lactose is avoided as a fermentable carbohydrate in the FM diet (referred to as the Low FODMAP diet). I know of a very good FM group that discusses FM as it relates to both SIBO and yeast overgrowth, all three do seem to go hand in hand. It is a pediatric group, but I’m sure they would not mind you listening in. Or, I’m sure there are other great SIBO/FM groups out there. Before finding HFI, I thought my daughter suffered from FM, and learned quite a lot about it, and related digestive conditions. Let me know if you’d like some of those resources.

I can't find the article anymore,but it was about fructose and galactose (one of the disaccharides of lactose) going (partially) along the same pathway in the liver. This has nothing to do with Aldolase B.

Anyway, thank you for your offer but there are plenty SIBO/FM groups and forums out there, it's actually how I landed here bc they mainly focus on a Fodmap diet (all of which the 'free' stuff caused me issues) and have less issues than me. There's definitely something about the processing of fructose in my liver, which might be due to an aldolase deficiency or something else along the pathway failing me and leading to fatty liver from 'innocent considered' amounts and ultimately rashes,constipation and what not.

When I searched fructose-free foods/diet you typically always are being shown a Fodmap diet, which clearly doesn't work for me bc the 'ok' vegetables still contain minimal amounts of fructose or a derivative. That's how I landed at this forum,hoping to find a sticky topic or something with all the safe foods and learn about it, bc I figured the people with HFI need to eat strict actual fructose-free foods.

But I can take a hint....you think it's 'just FM' as well and basically flipping me off (just like all docs sliding me off to eachother ) , to go to another forum/group, bc I'm not one of your group. Got the message.

Thank you for your help and best of luck to you all. I'm out.

[antonia]

I’m sorry you’re frustrated. We have certainly all been there. It’s scary and lonely, too. I get it. We are fructose, sucrose, and sorbitol free, but there are still HFI safe foods that would cause trouble for someone with SIBO or other related GI conditions, or other metabolic conditions for that matter. Low FODMAP is popular, but doesn’t work for everybody or all GI conditions either. There are people with severe cases of microbial overgrowth who don’t tolerate any plant foods at all, because the carbohydrates, including plant fibers, feed the overgrowth microorganisms. Others, who suffer from both FM and CSID, essentially manage those conditions with a ketogenic diet. All of these people I have run into when I followed FM/SIBO groups. Since HFI is, at its root, a deficiency in Adolase B enzyme that is all the diet will address, medically speaking. If a no carb/low carb diet is helping you, I would stick with it. There are other metabolic conditions that require a ketogenic diet to manage them as well which might explain your elevated ALT and other metabolic symptoms. I would encourage you to monitor your sugar levels, get a glucose monitor, so you can show doctors that your blood sugar is unstable. Unfortunately, a lot of us don’t present to doctors in an easily diagnosable way. We have to be our own advocates and do our own research, which I see that you are doing. Keep searching for answers. Don’t give up.

[antonia]

I just wanted to add that anything that comprises the liver can lead to a carbohydrate processing disorder. If you feel like it’s more than FM, not a GI condition, it probably is. There are a host of viruses than can cause liver damage. Even Covid has compromised some peoples’ livers. We had a recent “outbreak” in my area, where children were developing hepatitis to a common virus that had never been linked to hepatitis before. Not pleasant to think about, but parasites can cause a person organ damage as well. People can and do get them from undercooked or unwashed food, from their pets, or from the environment where pets or wildlife have roamed. Some parasites do travel all over the body, lungs, liver, etc., not just the gut, and can make people seriously ill. So, no, nobody here is telling you where to go, or wants you to leave. From what you’ve described thus far, though, it just doesn’t sound like HFI to us. The vegetables you mentioned that set you off recently are actually vegetables that some HFIers (all have slightly different tolerance levels) do tolerate in small amounts. But if it helps at all to sort things out, I do hope you’ll stay. We are not an exclusive club! 🙂

[ukbill]

However please do not give "advise" to parents of sick children. what is good for you might not be good for a sick child.

Keep smiling

[antonia]

This is a link to an article on the adeno-associated virus suspected to cause hepatitis in young children, as of recent, that I mentioned earlier:

amp.cnn.com/cnn/2022/07/26/health/hepatitis-kids-adeno-associated-viruses/index.html

Interesting that genetics may play a role in why it only affects some children in this way. However, case in point, that there are so many ways the liver can become compromised. If you have HFI, though, you should be unable to process fructose, sucrose and sorbitol from birth. It is not something that is acquired later in life, or becomes worse due to the aging process, or due to excessive exposure to fructose earlier in life. Excessive exposure early in life would kill you. And as far as I know, the only thing that the HFI diet “fixes” is HFI, or the lack of Adolase B. Although, reducing fructose load, in general, may be good for everybody.