When were you diagnosed?

[anastazya]

Just curious....

Was wondering when everyone was diagnosed.

This is because my GI Specialist from Mayo Clinic said that I couldn't have HFI because "I would not have lived past childhood."

I would like more proof to bring to my other doctor so he can order the genetics test for HFI.

Thank you.

[colormist]

I was diagnosed in 2006 at the tender age of 27. I found the diagnosis myself and sought out a geneticist to confirm my suspicions. He also thought I would have died as a young child and performed the test just to entertain me (as he clearly did not believe me). My parents didn't think there was anything wrong with me. They just thought I was a picky eater.

[julienc]

I was diagnosed at the age of 31.

I went to a GI doc at Duke, and he told me the same thing. "I really don't think you have HFI, because you would've been a very sick child and in the hospital constantly." He took my word for it, referred me to a geneticist also at Duke, and we ran the blood test which came back positive.

There are definitely those of us out there who make it to adult-hood, albeit knowing something is "off".

Good luck.

[ukbill]

1981 6th known case in Europe at the time, aged.. 25 if I've done the maths right.

If my mother had taken any notice of the health advisor's or friends and family who said I was just a faddy eater and she was "spoiling me" I would not have made it no.

So thanks MUM xxx

[Emily]

I was diagnosed when I was 6 years old, after I had a liver biposy to confirm. I am actually the only nown person in the family to have it.

[ukbill]

Welcome Emily,

Emily that is very common. It is very unusual for there to be other family members with the same condition.

Most people have 2 genes which make the fructose eating enzyme we are missing.

However a lot of people have one Gene missing. This is fine as enough of the Enzyme is still produced.

However if both parents have alternate genes missing and they have on average 4 children, then one will be like you and I.

Hence its is very rare. If you came from a family of say 12 children then there is a good chance some of your brothers and sisters would be HFI like you..

I'm assuming you are HFI.. sorry should have read the thread properly..

[rockydog]

Have never been diagnosed but in our family, we all know that 3 of us are "wierd" and they don't call us picky eaters. We must HFI because everything you all are saying is the same as us. I'm 52 and my older brother is 61 and my niece is 39 and we all have it, I guess. I just know that I'm glad when they are invited to dinner then the cook will pay extra attention to what we like! the story is my brother paved the way because, as a baby, he couldn't keep the condensed milk down and finally my parents tried whole milk and all was well until they made him eat his peas and he'd throw up... I'm glad I was 2nd! My favorite was potatoe chips and milk. now it's chicken and vegetables.

[Lin]

I'm 55 and found out I have HFI. All I can say is now my whole life makes sense.

[colormist]

I'm 55 and found out I have HFI. All I can say is now my whole life makes sense.

Wasn't that the best feeling in the world? To finally go "THIS IS WHAT I HAVE! I'M NOT CRAZY AFTER ALL!!!" I have no idea how many people said I was crazy and had some sort of mental disorder about eating fructose.

[tummyache]

I don't have a genetic diagnosis, but around 1985, a biomedical research group accepted me as a research subject. They accidentally discovered that if they tried to grow my cells in a fructose medium that they would die - so they told me I was Fructose Intolerant and to stay away from surgery foods in general. But, I have always had an aversion to anything sweet anyway - [1] because I quickly become nauseous [2] makes my mouth and throat sore [3] sometimes causes water blisters on the soft pallet + down my throat [3] and gives me muscle spasm through out my digestive track, starting with my throat and on into intestines and anus. I know that artificial sugars are a problem, like sorbitol, etc. Certain fresh fruits, especially the sweeter apples, give me a tummy ache. Actually, I have had digestive problems since my Mom brought me home from the hospital as a baby. Early on I couldn't tolerate dairy - both the sugar and protien factions. Then, a few years ago I figured out that wheat and oats were problematic [so possible celiac with gluten intolerance... or is it the fructans?] I added gluten free to my dairy free + very low sugar diet which has made a huge difference. No more sporatic episodes of extreme vomiting and diarrhea that last for days, or ER visits with my intestines swollen almost shut. Unfortunately, none of the doctors I have ever seen all my 65+ yrs has had a clue about digestive disorders - and that includes 3 gastroenterologists! So, I have been "diagnosed" through trial and error, bits and pieces, here and there. Oh, had three 4+ hour glucose tolerance tests done over the years and each time had a "flat curve result". Also, an allergist once did a sub-dermal type shot as a sugar allergy test and I passed out on him!

[charlie]

Hi esme and tummyache, welcome to the board, I'm glad you found it and I hope you find it helpful.

Tummyache - if you suspect you have HFI do not go for the breath test challenge for diagnosis as it will make you very ill, it is only used for fructose malabsorption diagnosis and even then you can be very sick after it. If you have wheat issues too you may have severe malabsorption as they react to the fructans in wheat in which case the diet restrictions are different.

If you suspect you have HFI do as completely fructose free diet as you can for several months to clear your system out then start reintroducing safe foods first which can be found on the boston site. Sweet potatoes are definately out, alot also can't have have avocado (also FM can't have avocado). Raspberries are out too for HFI but ok for FM. So basically cut out all fruit, veg and sugars for a while, see how you feel and then go from there.

Esme, if you can't do grains and beans you are sounding more FM as these are on the no list. Look up www.fructosemalabsorb.proboards.com for more info on that. But do get proper medical advise too.

Good luck. Keep in touch

[esmee]

Hi Charlie,

Thank you for the welcome. Is there a way for you to delete my first post that I made as a guest? I made the second post after I resistered as a member and added new info to it.

Isn't severe low blood sugar more a symptom of HFI than FM? I thought that is what I read. I have been plagued with this all of my life, and it is definitely connected to fructose consumption.

It seems to me that if 3 different enzymes are potentially missing in people with HFI then there can be different degrees of severity. I may only be missing one enzyme, while another person may be missing all three. They would experience a negative reaction from only a small amount of fructose, while I may be able to eat that same small amount without completely falling apart. But I can tell you that if I eat just one cup of bluberries, it will make me insatiably hungry. And if I do not eat something else "safe" pretty quickly, I will end up with a migraine headache a few hours later. However, I will check out the other board too and compare notes.

I am also fascinated by the info someone posted somewhere on this forum about converting body fat into fructose and glucose. I have done a lot of fasting over the past 25 years because food (almost all was high in fructose) made me feel so awful all the time and fasting was the only thing I could figure out to give me a rest.

However, I always experience a migraine with vomiting during within the first 1-3 days of beginning the fast, then my body seems to adjust and I feel fine for the rest of it. This happens pretty much every time I fast.

I have asked a lot of other fasters that I have met over the years, and know one else goes through this. Now I am wondering if it has something to do with HFI, as others on this board have reported getting very sick if they skip meals (I will also get a severe migraine if I skip a meal). Anyways, a little off topic here, but it was on my mind.

[esmee]

Hi Charlie,

I just looked at the FM site. Thank you. I really feel like my symptoms are much more of a fit to HFI. The only thing that ever gives me diarrhea is cherries because of their high sorbitol. But none of the other fruits or vegetables mentioned will cause this for me. I do however, suspect that I have some level of FM going on in addition to the HFI, just not that severe in comparison with others. I do get bloating from cruciferous vegetables and beans, for example. But a small amount of ANY fruit, including the low FODMAP fruits will preciptate me towards a low blood sugar episode. Bananas and grapes are perhaps the worst, next to watermelon and pears, and most of the vegetable listed to avoid are not that problematic for me. My worst symptom is low blood sugar and foods high in fructose will send me into a tailspin.

[charlie]

Hi esmee,

re deleting first post, if you posted it it may say modify at the top of that box, if it does click on that and you can delete it then, otherwise Chuck, who moderates this board will be able to do it, or just leave it, people will work it out.

If you suspect HFI it is safer to assume it is for now to get a better result and stay away from all fructose and sugars, if you feel able to and don't get any medical answers then you can always try a challenge test on yourself later but leave it a good few months.
I have read about various different gene strains of HFI but I think it is all down to one missing enzyme, Bill will be able to fill you in more on this when he comes on. However for all any fructose is not tolerated well, although their levels do differ.

The hypoglycemia is a better known side effect of HFI but it can also manifest in FM, again there is little known about it still which is why I started the other proboard to get more info. My daughter gets hypoglycemia very quickly but we have been told she now has FM not HFI as her liver tests were ok, but then others have HFI but liver readings have been ok so we are treading with caution. But then she may also have something else going on in the epilepsy side, just because you have one condition doesnt' mean every symptom is down to that. There also seem to be different levels of tolerance in FM too.

Re reaction when you fast, your body is probably reacting more than others to fasting and the detox effect and possibly dehydration. Migraines and vomiting can be a common side effect if the body is very "toxic" in the first few days of a fast as the body craves the toxins it has been used to. If you react you must Half fast to start with cutting out some of the bad foods first but sticking to others while the body learns to cope, then cut out the rest and drink plenty of water. I remember doing an elimination diet too strictly to start with to detox after christmas one year and went to the gym on day 3 for a sauna. I spent an hour rolling around on the changing room floor with the world spinning around, in and out of conciousness and dragging myself to the loo every 5 minutes while the gut reacted too. Unfortunately, or fortunately, I got myself through this very bizarre experience with little embarrassment as I had chosen a quiet time at the gym so no one came into the changing rooms until I was nearly recovered. she very kindly went and got me a bottle of lucozade, and a very good looking gym assistant!! Shame I was not looking my best with blotches all over my skin, sweat pouring out of me and not very lucid in my speech!!! So I would err on the side of caution with any fast!! especially if you already have a condition that can trigger hypoglycemia.

I think it was Bill who posted about the body fat conversion

[esmee]

Thank you Charlie.

Yes, it is all a bit confusing, but what ever is wrong is definitely wrong! and to avoid fructose as much as possible seems to be the answer. I am so happy to have found this board and all you great folks to talk to.