Hi there - could this be HFI?

[buddhasbelly]

Hi everybody, thank you for reading this. I have been longing to post something up here, but have been hesitant because I haven’t had a final diagnosis yet, so I don’t know whether or not I ‘belong’ with this group yet.

Hope my English is OK, I'm writing from the Netherlands, were HFI doesn't seem to excist. I am so happy to have found this group!

This spring I was diagnosed with fructose malabsorption, I had a score of 118 on the hydrogen breath test. Before this year, I never knew or heard about hereditary fructose intolerance or fructose malabsorption. It got me reading and now I am thinking I might have HFI instead/too.

In my childhood I have suffered from many illnesses. I had salmonella poisoning as a toddler, glandular fever/mono at age seven, scarlet fever bacterium at age twelve, glandular fever/mono again at age nineteen. All diseases involving me having an enlarged/ill liver that hurt, and to be frank: I never felt the difference between all those diseases, I just felt ill, beside those episodes many other times and pretty much the same every time. I have had ultrasounds of my liver on several occasions and it would be too big every time, but with no particular reason what so ever, so not important according to the doctors. One doctor didn’t even believe I really fasted before showing up for the test, because the results were weird so that had to be my fault. Basically, all I got in my childhood and as an adult, were referrals to psychologists, doctors thought I was nuts, lying, anorexic, you name it.

My mom went from doctor to doctor, but never got anything else than a lactose intolerance diagnosis for me when I was nine months. Previously I had been just fine, but since she switched me to formula all went downhill from there, a familiar story here of course. I had an everlasting bellyache and throwing up seemed to be my thing, which I did frequently and many times in a row. Bloating and diarrhoea were ever present until I went on a diet last spring. At age five my mom got me to an homeopath/natural doctor and he said not to feed me anything I didn’t want to eat. That might have actually saved my life. So I didn’t want fruit, sometimes a banana, I couldn’t tolerate much of the veggies, mostly dark greens were fine but others no. I also never drank soda’s, fruit juice or later on beer or things like that, just water, tea and coffee. My countries national candy, the treacle cookie was a nightmare for me. I was always tired, always got sick after sports, was pale and skinny, always anaemic, got a bruise if you would only point at me, and my blood clotting seemed to be off. I suffered from heart palpitations, and I would turn blue or yellow on occasions. Growing pains were no joke, especially in my knees and I developed extremely flexible and somewhat skew joints.

Not much showed up in my blood work, accept for the occasional liver malfunctioning and slightly higher ignition factor. What they did find was a severe shortage of vitamin B12 and iron deficiency all the time. And most recently this spring, the doctor found out that I had no vitamin D in my blood what so ever. What made him jump up and down that I was some sort of strange walking miracle.

I am thirty now, and the last couple of years (previous to the fructose malabsorption diagnosis) I have had therapy where I had to learn to overcome my fear of foods. It got me to the point where I was able to eat the foods I really did not want to eat and me getting ill and throwing up, what was considered a therapeutic success since I had overcome my fear of the food and the vomiting. Sounds familiar to anyone? Anyway, I quit therapy now.

So what I want to ask you. Did/do any of you get vitamin B12 and D shortages (I read about the anaemia here already)? And do you think I am right to press for a HFI test? Did any of you get a positive breath test ánd a positive HFI test, is that even possible? My doctor doesn’t seem to be in a hurry about that, and I am feeling quite insecure about it, since he already diagnosed me with something else.

Thank you so much for reading!

[hifimomof3]

Your history certainly does sound like HFI but I am not sure I would just decide that I was HFI and FM without talking to the doctor again. It could be that you are vitamin deficient because your diet has been so restricted for so long.

Or, it could be that there is something more complicated going on. If I were in your position, what I would do is get a nice new notebook and at the front I would write my food history as best I could remember, and as objectively as I could muster, from birth onward. What was your birthweight, did you thrive on breastmilk? When did you switch to formula, what foods did you eat ok as a child, what foods made you throw up, what foods gave you diarrhea, etc.

I would go back to the doctor with this info and discuss it again. If the doctor feels like the data is still not clear, then maybe you can see a GI specialist. Have you got access to a nutritionist?

[Tammy]

Hi and welcome to the board.
Just like was said before, we hesitate to ever tell someone we think they have HFI. We are not doctors here and would not want to lead someone down the wrong path. Something could get missed, and we certainly don't want to make anyone worse.

With that said, your story sure does sound familiar. Lots of similarities here, that's for sure.

My daughter, with HFI, also has problems with low Vit D. And she drinks milk like no one else.....

I agree with a notebook listing what foods work for you, and what foods make you ill. When you see it all written down, it might give you and your doctor a better look at it. I would definitely push the doctor to look at HFI. I realize this isn't easy in the Netherlands, as my son has been living in Amsterdam for about 7 years now. He is fighting his doctor about a sore foot for over a month, and still has yet to even get it x-rayed.

In the mean time, just eat what you feel good on and don't worry about what others tell you is "healty". Healthy for others may be poison for you.

Good luck and keep pushing the doctors.

[buddhasbelly]

Hi again, thank you so much for your responses! I understand that you are not doctors, I am just interested in your experiences. As colourmist wrote somehere, you probably know more about this condition than the average doctor ever will. I would never self diagnose with HFI; I didn't believe the FM diagnosis until well after it was made.

I am with a GI specialist and a nutritionist at the moment. The GI has been a great doctor for me so far! I live in a big city with four hospitals and nowhere could they test me for FM, they only do that at the childrens wards and apparently, if you didn´t get diagnosed before age 18 you couldn´t have FM, right. Anyway, my GI is in a hospital in a much smaller town, but got me tested for the whole lot: fructose, lactose, glucose breath tests. And he was the first one to discover my vitamine D deficiency. But he doesn't seem too keen on the HFI idea. He promised to look into it after my last appointment and to get back to me, but when I phoned after a month, his secretary told me he doesn't want to discuss it with me until January. So that's why I am preparing myself to make a strong point, because I never recognized myself in anything like this before.

The nutritionist frustrates me somewhat. She is the second one I'm with in a year, and she thought me a lot about healthy eating, but she just doesn't seem to believe the extent to which I can't tolerate fructose. She keeps pushing me to eat stuff I can't. Recently I have just decided to ignore her on that, I just won't do that anymore until I am sure what I have. I keep a food journal every time for a week before I go see her. She also encourages me to try every food three times before I toss it, which of course is a very good idea in theory, but when it keeps you up all night, three times is a lot.

I hadn't thought about writing a food journal for when I was a child, that is such a good idea. I am most certainly going to do that to prepare for my next appointment.

Tammy it is interesting what you say about your daughter. I was keeping an online food diary for almost half a year prior to the vitamin D diagnosis, and every day the charts said I took in more than enough vitamin D. It really sounds like an absorption or storage problem rather than a lack of intake.

Tammy, what a coincedence that your son lives in the Netherlands. Good luck with his foot! Maybe if his regular GP doesn't want to send him for an X-ray, he could go to the 'huisartsenpost', that is sort of the GP pool for out-of-office hours. It is more expensive to go there than a regular GP appointment, but it depends on your insurance. He can only go there when he is in acute pain or something, but then he would get the chance to make his point to a different GP than the one he has been fighting.

[charlie]

Hi, welcome to the board.

Like the others have said a clear food diary is your best option, especially as sometimes the affect takes several days to kick in and it can take up to 4 days so you need to be able to refer back.

Whichever one you have, you know you have a problem with fructose so the best start is to take ALL fructose out of your diet to start with for a good couple of months. If you struggle to get them to listen and test you fully for HFI then you are safer to assume it is that as you could have liver damage if you continue to eat fructose.

However it may just as easily be malabsorption and this can cause other things to be malabsorbed through the bowel if there is too much fructose "bunging up" your system. So either way you need to cut it out for now. Take a look at the malabsorption site too for ideas www.fructosemalabsorb.proboards.com

[val]

Hello buddhasbelly

I had a folate and B12 deficiency which was sorted out by having a B12 injection every two months until my diet was sorted and I found some Vitamin Mineral Capsules that suited me. At present I have my B12 needle 3 monthly as I cannot seem to absorb enough from food or capsules.

My Vitamin D seems ok, but Vitamin C is a major problem, which has been over come by taking capsules obtained from frusano in Germany.

Unfortunately those capsules are now unavailable and I am waiting to see if their replacement will work for me. All Multi Vitamin, Mineral tablets in Australia that I have checked on have sugar/fructose in them.

I also suffer from heart palpitations, and had bad growing pains as a teenager.

[ukbill]

Hi Val. Welcome to the board.

I know all about growing pains.. When I decided to grow (I was the second smallest in my class at school) I grew at a rate of over 1" per school term! I peaked at over 2" in 7 weeks, during a school holidays.. which also coincided with my parents buying their first large freezer.. and I had at last free access to as much food as I wanted that I could eat.. I do admit I was eating 5 or 6 large meals a day.

Much to my mothers disgust!

I also learnt how to cook at the same time.

Yes growing at that speed Hurts a lot!

Val are you HFI or DFI or not sure?

I take a slow release vitamin C which has no sugar added but personally I need no other vitamins.

The ones I take are made by Bayer a much bigger organisation than the Frusano people who I have had very unsatisfactory discussions with.. they really have no idea what HFI is or how to help and are just jumping on any band wagon that allows them to sell over priced products.

The Vitamin C I take is a slow release (8 hour) product with Zinc it is called "Redoxon" made by Bayer

www.bayerhealthcare.com/scripts/pages/en/company/corporate_profile/divisions/consumer_care/index.php

I seem unable to persuade Google to let me know where they can be bought in Australia however this is the item

www.pharmacy2u.co.uk/redoxon-all-day-defence--20-capsules-p366.html?affID=86732&affiliateid=81866680101062

Amazon list them as well

I am sure you will find it available in Australia.

If I have a very heavy day and need a boost I occasionally take a Vitamin B complex which contains B1, B2, B6 & B12. The tablets contain Matodextrin which in such small doses will not be a problem even if contaminated with Fructose.

However it also has a very small amount of Manitol which a sweetener from the same group as Sorbitol so in large quantities (2g per day or more) could cause us some problems.. I am not sure how much is in the tablets I have so I will not give the info on who's they are.

So I only take them on very rare occasions (usually if I'm feeling worn out and have a busy day so cannot rest)

I hope this helps?

[ukbill]

Sorry I for got to welcome buddhasbelly as well

Hi from the UK

I am not sure if Hydrogen breath test will be positive for HFI.. I know the test with Fructose is dangerous for HFI

I keep banging on about people telling Doctors to positively discount HFI FIRST before ever running the Hydrogen breath test with Fructose just in case the person is HFI!

Heart palpitations can be caused by an imbalance in Potassium.

Did your doctor indicate anything strange about your Potassium levels?

My personal experience with nutritionists is not good. They are all brainwashed into thinking that a diet that excludes all fruit and Vagies is unhealthy..

Well it is if you also add lots of saturated fats and the big elephant in the room refined SUGAR!

In the UK's the government has been running a "5 a DAY" ( 5 servings of fruit or vegetables a day) health campaign for years. I think most of the benefits are that it replaces 5 servings of fat and sugar.. (ie chocolate or cake) not for the vitamins and minerals contained in the fruit or vegetables.

I can come over to the Netherlands next year if you find out you are HFI and show you the foods I eat and take you food shopping, if you are interested?

[buddhasbelly]

Hi Charlie, Val and UKBill, thank you so much for your replies! It took me a while to respond, ate smoked salmon this weekend and apparently the factory thought it was a good idea to add sugar. Didn't know about that one yet.

I started a food journal about my childhood, lots of stuff to talk about with my mom, lots of information for the GI doctor.

It is also a little bit new for me that symptoms can take up to four days to appear, that is very usefull information and explains a lot!

Val, I've had B12 shots for years now (first at age 7), every time they take me off them to see if I'll manage on my own it goes wrong, so the doc decided not to take me off any more. I get them every month. Just like the vitamin D, but that's a liquid to drink, and now I will also be getting iron shots, since I can't hold down the iron tablets. It would be nice for you if there would also be vitamine C shots, but I never heard of that? Maybe with Amazon delivering those tablets UKBill mentions you could get them in Australia as well? Probably cost more to ship than to buy though. Sometimes I wish with the fructose diagnosis came a bag with money and a secretary, haha.

UKBill, those vitamin C tablets are briljant! I immediatly asked my sister to bring me some, she goes to the UK again at the end of this month. I am on a ridiculously expensive Dutch brand now, which is a powder, so tastes not so good.

I checked the lab paperwork, my potassium is fine fortunately. The palpitations aren't nearly as bad as when my B12 was low or the vitamine D. It is probably all interconnected, the wonderous world of the human body!

If I diagnose with HFI we should go shopping! I am traveling to London next year anyway, so we could see if we could combine that.

[ukbill]

Sounds good to me.

I would expect the Bayer Redoxon Vitamin C to be available worldwide In the UK they are for sale in most Tesco Supermarkets in the vitamin and supplement section.

They are not cheap and are sometimes put in a different place to the rest of the Redoxon Vitamin C tablets (effervescent sweet flavoured types )

I usually wait for Tesco to have a special offer and buy 3 for the price of 2 large packs of 80 capsules.. so then have enough for a few months when getting down to my last packet I start watching for the special offer again

They also contain Iron as a colourant so you will get the added advantage of that as well

[ukbill]

Usually the amount of added sugar in smoked Salmon is very little so long as you did not eat 100's of grams of it you should be fine..

I eat loads of smoked salmon and never had a reaction to it. Sometimes in the UK they list the added sugar as Dextrose so this might be the reason why.

P.S.
The Norwegian Smoked fish is sweeter (Salmon, Trout etc.) and I do not like the taste of it as a result.. I stick to the Scottish Smoked Salmon.

[val]

Bill I was diagnosed as HFI but in the 20% who cannot be diagnosed. I have my medic alert but I am sure if I showed it to anyone they wouldn't know what to do about it.

The Vit C you mentioned sounds interesting. I have located it on the bayerhealthcare sight you suggested and printed a copy to take to the Chemist or Supermarket when in town tomorrow. I am hoping at last I have found a Vit C with no sugars or orange flavor. The last of the unflavored Ascorbic acid was taken off the shelves here two or three years ago, and I have been unable to find any since.

I agree that Frusano are not very helpful, and it takes months to get my capsules, but it has been the only way I have been able to get any Vit C at all, and my blood tests have been reading normal since starting them. The next problem is when I went to reorder this week, they have changed the product so I am back to square one, not sure what to do.

The Vitamin B complex you take sound interesting but I am afraid I would not be game to even try it. I have tried so much lately with the Dietitian, that I have become very cautious of all foods again and am sticking to just my goats milk and cheese, plain meats, fish, poultry and white rice. I eat some of the psyllium you suggested and seem to get on alright with that as well.

Will let you know how I get on about the Redoxon.