"My Story" New member undiagnosed

[david1]

Good morning/afternoon to all. i am new to this forum and found it very interesting,
A little about myself, i am 50, yes 50!, i have two brothers and a sister, one of my brothers is the same as me, other brother and sister are "normal" lol. Married with 3 grown up daughters all living in the UK all "normal" + two Gran Children "Normal". I have traveled for work my whole life and can tell you at times i wondered why, with that said, i have been living and working in the Middle east for the last 3 years.

I have never been diagnosed, but can tell you that i am 100% HFI, I only found out the name for it about 10 years ago, through my bothers wife, she obviously had a bee in her bonnet to find what it was, and came across an article on HFI, it was actually nice to find a name for it not just " cant eat sweets".

I am one of the lucky ones,more by persistence on my mum's part with many doctors. Being born in the early 60's very little if anything was known about HFI, Same story when changing from milk to solids i was continually sick every time after feeding, mum being concerned took me to doctor after doctor with no real explanation, eventual one Dr said try "Glucose" this seamed to work and i started to thrive.
As i grew mum learnt and i my opinion was the best mum in the world, she never pushed any food on to me she would put it in front and allow me to eat what i wanted on my plate, admittedly i remember very little about it.
As i grew and school started infants, 4 year to 7 years was not to bad as lunch was packed from home, primary 7 years to 11 years was the worst, in those days everyone had school dinners Free, hated every minute of it, what was dished up on your plate you were expected to eat, so when i finished what ever i could eat on my plate and went to discard the rest in the bin, the teachers would always send me back to my place to eat "HELL" is all i can remember, i think my mum was at the school 3-4 time a week trying to explain to no avail, eventually i stopped school dinners and packed lunch it was. high school came and went without to many issue 

As the years passed i learnt that my taste buds were my main protector, when i was younger learning what i could and couldn't eat was always trial and error, good days! bad day! Eventually you learn!.now i know most of what is OK and what is not, i still try different things, the way i work now is if it tastes sweet "DON'T EAT" this has helped greatly with reducing the bad days, still occasionally i have then, some foods that you eat taste OK  "no Sweet Taste" with in minutes you know that there was something in it.. Hot! Sweaty! feeling sick,confused! fizzy! (followed by trip to the bathroom) ahhh "feel slightly better". This has not stopped me going out trying new restaurants, but i still pick the most simplest thing on the menu and hope its OK, always make sure there is food at home for after if it don't work out..
Yes it is hard at times not being able to eat like normal people. I look at cakes, chocolate, sweets and wish i could eat them they look so delicious but resist the urge, because i know if i do another trip to the Bathroom will follow.    

Life has been a tough traveling, always a worry but i was not going to let it stop my career. Travelling was and still is a challenge. Hotels evening meal simple Omelette, or steak if available, Breakfast Omelette,  KFC is and has always been my life saver where ever i am. well 90%. always carried crackers when travelling to new destinations just in case.

The moral of my story is if it tastes sweet, don't eat it.

I am thinking of getting diagnosed but don't see the point now, have liver the last 50 years without conformation, do i need a doctor to tell me what i already Know. Not Really!

I hope that my story helps some of you, yes food can become very boring with little choice, survival is the key, try things by all means but if it done work out add to you list of no's, if you see it again avoid, don't think this time it might be OK because it won't!!!!  HFI is for life!! We are not different, just a bit fussy with our food.

Have a great day. 

David 



 
    



 
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[colormist]

Hi David!
Welcome to the group. I find our collective knowledge to be extremely useful--why, just last week at the ER I used some knowledge about Regina drinking Diet Pepsi as a inference that I could take a medicine sweetened with aspartame. I would have never known I could drink beer (or even what beers were safe/not-safe) if I didn't have Bill's exhaustive experience with various alcohols. And I would never have known the daily limit of fructose/sucrose was estimated at 100mg for an adult without learning Fred's medical history.

I did want to warn you to be careful if you try to eat KFC in the states. It's made me sick quite a few times, but the recipe might vary by region. I tend to survive on McDonalds Chicken Nuggets and Fries while I'm travelling in the states.

I also already knew what I had when I went to get a diagnosis. I'm not sure how the doctors do their doctoring in the UK, but in the states they don't tend to believe people that self-diagnose. I got a referral to a geneticist and even with my litany of reasons why I had this disease, the geneticist didn't believe me. They think it's too uncommon and they've never met anyone that has that condition. Hell, even with a diagnosis, the doctors at the ER were being skeptical and were suggesting things that I should eat that were not safe. Even the head doctor couldn't comprehend the scope and said, "wait, you can't eat fruits and vegetables?" This was all after they ran away to look up the disease and learn about it. Afterwards, they were more concerned about me having HFI than they were for the reason I was in the ER (gallbladder pain). Even my paperwork is a lengthy write-up about HFI and no mention about my gallbladder issues. They even wanted me to followup with my regular doctor about HFI and NOT about my gallbladder pain.

So, on one hand, it is better to have a diagnosis because the doctors might actually believe you when you're in the hospital. On the other hand (like my geneticist advised me when the test results came back positive) the doctors are going to be so concerned about your HFI condition that they'll be afraid to do anything in the hospital--except, apparently, talk about HFI at length. Of course, if you had a regular doctor that had your medical history (and stopped moving about like a migratory bird, like me), then maybe they might be more relaxed about your medical treatment.

I am looking forward to hearing more from you, David! I hope I can learn something you've discovered about HFI that nobody else has and have additional insight to share!

[Tammy]

Hi David!
It's great to have a new ideas come to this board. Even though some of us have been dealing with HFI for many years, we still learn things off each other that we might not find out other wise. It's a great site.

My daughter, Regina, has a diagnosis. I'm glad she does. It's come in very helpful when I'm dealing with things like the insurance companies. One time they wanted her to use a tube fed food supplement that contained fructose. They wouldn't allow the fructose free one because it cost twice as much. But since she had the DX, they couldn't argue and HAD to supply the correct one. It's also come in handy when she has been at the ER. Like Laura has already said, it makes the Dr there take her seriously, not just be some crack pot hypochondriac with an insane mother.

So welcome to the board. Glad you found us.

[colormist]

After my ER visit, my husband said I should bring a copy of my diagnosis papers. He was convinced the doctor did not believe me when I said I had Hereditary Fructose Intolerance. I'm just used to doctors acting like that when I say I was diagnosed with HFI. Even then, with a diagnosis, the doctor was looking at me like I was a hypochondriac when she asked me how I found out I had the condition. Like it was some kind of fake, made-up disease.

It's frustrating even talking to doctors, yet alone family and friends.