New, worried and undiagnosed

[karmar]

Hi everyone, my name is Karen, currently undiagnosed and highly sensitive to the point of any ingestion of fructose, sorbitol and fructans I suffer severely with sore liver, kidney and spleen. I also suffer from lethargy, nausea, indigestion, headaches, gastrointestinal distress and my heart has a dull pain amongst others....
My story starts from my father that believing a fruitarian diet is the cure to all ailments and disease and put us kids on the diet when I was 7 yo. He instilled the fear of doctors and if we suffered any sickness it was because we ate food. We were harshly punished if we were found to have eaten food and feared mentioning if I was not well. I remembered recurrent bouts of 'gastro' as he put it, hypoglacemic episodes and aversion to sweets besides the mint flavoured ones when we were able to get our hands onto them. We were not allowed to go friends houses due to the chance of eating anything other than fruit. As a result we obtained foods in not the most hygienic way and in means that are against the law and threw our fruit away. I only ate it when I had to.....
Through teenage years, lived with my mother and didn't touch fruit and rarely ate veggies beside potato.
I ended up back at my fathers in young adulthood again and again the diet was fruitarian based and was dictated with the occassional inclusion of meats. Because I was always reacting my belief was that I was in constant detox as i was taught and ended up entirely on raw foods and became extremely ill and emaciated.
The diet resulted in massive deterioration of my teeth and had amalgams placed, that then was the reason to my ailments.... Had them all removed at the end of last year as well as quite a few teeth to no avail.
As I have always feared doctors, I discovered naturopaths and have sought help. The recommendation was to get fructose and sorbitol tests done and a liver detoxification pathway test done. I have also been referred to a gastroenterologist in September.
My fear now is to partake in the breath test which start tomorrow due to the reactions I have whenever I ingest fructose.
Curious to thoughts of whether to partake in breath tests or just wait til my gastroenterologists appointment in September? Any input would be greatly appreciated.

Nice to find a place where I can relate to so many others!

Look forward to hearing from you all

Karen xx

[charlie]

Hi Karen, welcome to the board. Wow, what a history.......... that sounds like a terrible experience for you. What on earth was your fathers idea on a fruit only diet? We were never designed for that and that must have had a seriously damaging effect on your digestive system (even if supplemented in secret). We can (well unless you have a fructose problem) survive healthily for a few days on fruits only but long term the loss of proteins and fats will have a very detrimental effect on our bodies putting it into major ketosis leading to serious organ damage.

Now whether you have HFI or FM or more malnutrition effects I don't know but I would start to place proper faith in the doctors for now and get properly checked out from head to toe by them rather that trying to do it yourself. You haven't said how old you are, hopefully you are young enough to recover fully. I wouldn't touch the breath test until you have been properly checked out in September as it could tip you into a serious reaction if inappropriate.

Until then, make changes slowly and carefully to allow your body to recover and respond appropriately and read the info on this board for help and advise but not as gospel until you have clear answers medically.

I run another board as we are in between diagnosis so have a look there too, it is in its early days but may give a few ideas its for fructose malabsorption. www.fructosemalabsorb.proboards.com

Good luck, well survived, onwards and upwards from here.

Charlie

[susan]

I have learned to advocate for myself, even if nurses or doctors might not like it.

Example: about a week ago, I went to a doctor thinking I was getting an ulcer due to the stress of my job. My husband came with me that day. For the first time, he saw some of the nonsense I go through.

I explained I was diagnosed with HFI. The doctor questioned what it was and the source of the diagnosis. I give all the information.

The doctor said I could do a test to see if I have that bacteria which causes ulcers. We questioned how it was done: breath test or blood test.

I asked more about the breath test thinking the results would come back sooner. The doctor said I blow into a balloon type container.

Okay. That seems easy enough. So the doctor got the nurses to do the test.

I blew into a balloon. No problem. Then a nurse told me to drink what was in a cup. I asked what it was. "A citrus drink".

My brain starts calculating....citrus drink.....citrus....fruit.....

"NO", both myself and my husband said firmly.

I asked for the ingredients. I told again I was diagnosed with HFI.
A nurse asked what would happen if I drank it......."get nauseated?"

Instead of explaining HFI all over again, I said fructose is a POISON.

A nurse went to find what the ingredients were. No one could tell us the ingredients. I did a blood test instead.

The moral of the story is: protect yourself. There may be alternatives.

[Tammy]

These are the times that I enhance it a little with Regina. Not with the Doctor himself, but to the nurse, I would have said......."it's an allergy. Would you give peanuts to someone with a peanut allergy?" Or I tell them she will puke all over them instantly. That gets their attention, too. lol.

[karmar]

I decided not to do the breath test. First being lactulose which is synthetically made from glucose and fructose unless I'm advised to by the gastroenterologist. I ate 3 iceberg lettuce leaves and received sore liver and kidneys from it. My son has also been sent to see an allergist at the royal children's hospital(waiting list is over a year) as he also displays I'll effects from fructose and sugary products.

I am 29. I don't know which I am or if its through years of consuming fruits, but if I eat too much my spleen also gets very painful also and feel unwell for up to a week. I get a queasy stomach if I eat eggs especially with runny yolk, any fruits and most veggies. About a month ago I ate 2 salads as main meals in one day after having a small amounts as part of meals prior to that during the week and I was up all night throwing up undigested salads.

Gastrointestinally wise I can not break down veggies or fruit, they come out as I chewed them, if I ingest any fruits like apples or vegies like corn they go through me as chewed chunks in a watery mess..... A litte unsettling and sorry for the graphic description...

The worst was last year, I got really sick, i was still on raw, I slept for maybe 18hours of the day, my liver, kidney, spleen and heart were extremely sore, I feel extremely nauseated and could barely walk through lack of energy. I dropped to 44 kg during that time.... It was a very scary time, I would pray I would wake every time I feel asleep.

I know there are many people that are worse off that me, so I try not to dwell on it.... Just a continuing learning process of life. There are steps taken that might take you sideways but the more steps taken forward the straighter the line becomes....

As for father and how the idea of fruit diet came about.... It occurred when he read Dr.Max Gerson books about enzyme nutrition and other books hailing the perfection of eating a raw food diet and that lifestyle to be the cure of all disease.... Yet to this day he cannot practice what he preaches!

Thanks, for taking the time and reading my posts and replying. It makes a little easiler to talk about when others know the implications of what are praised as healthy foods to be the detriment to the HFI & DFI. The concept of it baffles the general population.

Have a great day!





I a

[ukbill]

Kamar,

I am not a Dr or medical proffesional but I would think if you were HFI you would have been dead long ago on that diet.

However if you are FM then the agrivating effect of so much fruit could lead to effectivley major IBS / uslerative colitis type symtoms.. which sounds a bit like your description.. (I have a good frend from school with it)

Sorry my spelling skills are limited and baddly lacking today.

If a fructose free diet suits you then go for it.. it has not done me any harm..

[Tammy]

I agree with Bill on this (gasp! Everybody pick yourselves back up off the floor now.... ;D) but would like to add one thing.

If a fructose free diet suits you, then go for it.

EXCEPT parents, please don't put your kids on it if they don't need to be. It is lacking in vital essentials for a growing kid - unless they need to be on it. Fruits and Vegs are good for non-HFI kids.

Now adults on the other hand............go for it.

[ukbill]

Tammy

I was glad to be sitting down when I read your last posting!

However please can you tell me what vitamins and minerals are missing from the HFI diet?

Besides vitamin C?

I have asked maybe 10 or more dietitians and they cannot think of one mineral or vitamin we are short of.

Its Vegetarians and particularly Vegans who need lots of additional minerals and vitamins to balance their diet not HFI.

So long as the diet contains a few essential meats.. Liver for example is essential, and red meat not only things like chicken and fish, but pork, lamb and anything else available in over the meat counter.

If people are too squeamish to cook liver then put liver pa ta on toast, it is simple and very nutritious, or get someone to make it for you if you cannot find any without the dreaded added sugar (it is easy to make)

Or how about a good old American favorite Meat Loaf?? Only leave out the onion.

The only reason nutrition and diet people are trying to get people to eat more veg and fruit is because it will replace cakes, cookies and chocolate which are really very very bad for everyone!

Particularly the bought varieties which contain loads of nastiness such as preservatives, hydrogenated fats, emulsifiers, salt and worst of all sugar.

[charlie]

Yes, I'm glad I was sitting down too.........

Actually Bill they can be deficient in alot according to a very knowledgeable nutritionist I spoke to. Having reached the end of the road with the hospital regarding Megs blanks and energy problems I contacted a very experienced nutritionist who reeled off a whole load of information about the deficiencies she may be experiencing and also the chain reaction effect of being deficient in one eg Vit C. Unfortunately general dietitians don't deal in the subtle, only the obvious.

Although we are looking at the wrong side of £300 to get answers, talking to him he really made sense so I think we shall go for it as I can't keep going round in big circles while she gets worse, we now have hayfever to contend with and the fun of finding sugar free medicines for that..... suitable for her age....... It does involve a few blood tests so that will be fun............

[ukbill]

Yes Vitamin C is a precurser for a lot that happens in the body.. which is why I take a regular dose of a slow release type.

The only other thing that might be missing is the one we get from eating green vegies.. But that is only, so far as I am aware, important if the person is pregnant to avoid spina biffida If memory serves me well.

This happily is not a problem for me

£300 is a lot of money.. I hope you get results that are helpful.

Love to Megan

xoxo

[bella123]

I was diagnosed with hypoglycemia around 6 months when I began to eat food. I became very ill at eating times and would vomit especially anything with a sweet taste.

growing up with a limited diet I always would tell people I was allergic to sugar. This is what my mother told me to tell people.

when I was a young woman twice I was given glucose intravenously
after recovering from surgery. Needless to say I drifted into a coma both times, once being rescued by my mother and the other time being rescued by a friend who was a nurse.

I first learned about fructose intolerance a year ago from a book my mother gave me. It didn't seem to help until I read the part about HFI and that it should not be confused with fructose intolerance. That HFI was entirely different and maybe even life threatening. I recognized it right away.

I am now 59 and find that there are less and less foods that I can tolerate without getting sick. For example I can no longer eat broccoli or cauliflower like I used to. My husband has become quite a good cook with my limited dietary needs, but even some of those recipes now seem to bother me.

I am new to this forum so forgive me if I'm putting this in the wrong place - I have never know of anyone else with what I have for all these years so I am anxious to find out if anyone my age or older is experiencing a change of tolerance. I mostly eat chicken, meat sourdough bread, white rice and potato chips with a glass of non fat milk at night.

[sarosh]

Dear Bella,

I have the same symptoms as yours. I am 56 yrs old and like you my symptoms are getting worse with age. I cannot tolerate even sweet smells now- I cannot pass by Cinnabon without feeling nauseaus.
I am waiting for the results of my blood test from Dr.Tolan's lab.
Sarosh

[ukbill]

Interesting..

Welcome to the site Bella123, what part of the world do you live in USA, UK, Europe, ASIA??

It helps a lot with the help and advice people on the forum can give you.

Yes it sounds like you have at last found the right place to get help

I was diagnosed in 1981 I am now 56. Although I am reducing the things I eat slightly I am finding that my health has never been better.. Now I hope I have not Jinxed myself by saying that! and the episodes of Hypo are now so few and far between I have to think really hard as to when the last one was!

I think what you are going through is your body fine tuning itself.. As a child we will eat anything.. well a baby puts absolutely everything in its mouth partly to see what is edible and what is not..

So long as it is not so full of sugar that we will vomit we will then eat it.. more or less depending on how hungry we are.

However damage is being done even if the dosage of Fructose is below what will cause a "reaction" hypo or not.

As we get older we are more attuned to our bodies needs.. (aches and pains building up..) so we start finding things we used to eat are now too sweet.. in truth they always were too sweet..

Are you both finding your health improving as you start cutting out these Fructose containing food items?

[roman]

UKBill, vitamin B12 is a real problem for fruitarians. Also, it is more than likely that fruitarians do not get enough long-chain omega-3 fatty acids (the kind we get from fish or butter, not the kind in flax seed). We need the long chain form (animal sources) because even though we are in principle able to synthetize them from the short-chain kind (plant sources), but we cannot make enough (synthesis is very slow and inefficient). Fruitarians have a problem even with short-chain omega-3's, let alone long-chain.