just diagnosed, not sure if its DFI or HFI

[karen]

Hello all.
I am a 42 year old female and just recently after suffering from GI problems have been diagnosed through a breath test as DFI.
However, I have 2 children and they are also DFI.
I am concerned that I might have HFI since both of my children have a prolem w/ fructose as well and we all seem to be able to tolerate very little fructose at all. Both my children's GI and my adult only GI insist that we couldn't have HFI since I would have had severe problems long before and my children would have as well (they are 10 and 13). However, i"ve read how strict you have to be with a HFI diagnosis and possible liver/ kidney damage etc. I don't know what to think.
Can you have HFI and it not be discovered until you are in your 40's? or would I have had liver problems. etc. long before this? Both doctors refuse to do any more testing.
I would appreciate ANY thoughts as we are all new to this.
Thank you in advance.
ps. I am the FIRST DFI patient that my GI has had and he doesn't know what to do w/ me I think. I've tried several GI's in my area w/ zero luck.
Thank you!

[monie57]

Hi, I'm newly diagnosed as of thurs. I also had the breath test. I am not sure which I have either . I was told to follow the fructose intolerence diet for 1 month then see Dr. I have been having high liver enzyeme test for the last 1 and half years, high trigl. and high cholest. for the last 1 and half years. my sister also has trouble digesting fruit and veg. We both have a lot of kindey stones. She has Diabetes,also. Her liver is alreadly damage. She needs a transplant. so i told her she should get checked for HFI. My 2 daughters have IBS with constipation so I'm wondering if it is all related.
I'm looking for recipes, which I see there is plenty of here. Yeah.

[colormist]

Here's a link that discusses the differences between HFI and DFI (or DFM) in pretty clear and plain terms.
www.frusano.com/Fructose-Intoleranzen:_:9.html?language=en

I'm just really curious about these doctors that are performing the breath test without first eliminating HFI through a blood test. If they suspect either one, a HFI diet would be safest for a couple weeks until the results are returned.

I didn't discover what my diagnosis was until I was in my mid-20's. Generally speaking, if you live your life as a "picky eater" and never become curious about your symptoms, then you might never discover you have HFI. However, with the frequency that fructose is appearing in foods, it's getting harder to live a HFI lifestyle without knowing it.

You might try asking for a referral to a geneticist. HFI is definitely genetic, but even DFI can be passed on from the parents.

[meaniejean]

Karen,
I am also the mother of two kids with fructose intolerance. They are both having a number of labs done to determine DFI v. HFI. My youngest was hospitalized due to vomiting and also exhibited failure to thrive while receiving fructose in his diet. The older one has been having symptoms since he was weaned as well.
As Fred said and as I have now read in a number of places, you can manage to go through life with HFI and not really know exactly what is going on, but again, as Fred said, you will probably know something is not right. I suspect that I also have HFI because of my two children and because I have had ongoing hypoglycemia, aversion to fruit and sweets, and GI, liver and urinary issues throughout my life - and some clotting issues, including two postpartum hemorrhages (and no cavities). In my 20s I tried to figure it out when I finally had health care, but didn't actually put it together until my second son showed such severe reactions to fructose at only a few months old and my mother-in-law mentioned my "white diet". Turns out that my little brother also may have HFI as he experiences hypoglycemia, kidney pain, has no cavities, hates fruit and has a clotting disorder. I am one of 10 children, so statistically speaking, there would be 2-3 of us with HFI. Should be an interesting genetic workup.

We are treating this as HFI now until we find out otherwise. It's probably the best route for the three of you as well. Our next step is the genetic test at this point and that might also be a good idea for you guys if you can convince the GI to order it. No more fructose challenges here - the reactions are just too violent. I wish I had listened to Colormist and some others on here about the dangers of a challenge - it was hell for my 3 year old.

All the best to you - and let us know what happens with the diagnosis.

[monie57]

I' m 51 and just being diagnosed . I had GERD since 35.so used to the plain foods. I have loved candy/cookies all my life. not much for fruit and veggies but trying to eat healthier and then this came up. My teeth are rotten but dentist thinks my enamel too soft but probably from all the candy/pop. my mom was diabete tpye 1 . Younger daughter - hypoglyemic. I will see what Dr. has to say Nov. 20th. I ate something wrong today or yesterday as am running to bathroom. i am writing everything down that I eat but only thing I see is I switched to a different organic bread at lunch and had a small piece of lettuce.How soon does it take for the wrong thing to react in you? How long on this diet before body can get regulated? I stay home a lot because of it.

[Karen]

Thank you to all who responded.
My GI refuses to refer me to a geneticist (spelling?).
He swears that it can't be HFI or I would have died as an infant. I never really had problems w/ food until my mid to late 30's.
If I try and find a genetic specialist on my own... how do I go about doing so?
Any other suggestions would be welcomed.
by the way.... my teeth are horrible- rotten, several root canals, very sensitive, etc. any links to the fructose issue w/ this??
THank you in advance...
Karen
ps. I am trying to avoid frusctose as even a small amount will make me ill. I am just worried about any "hidden" fructose that I might not be catching. Eating out seems to be quite frightening.

[colormist]

This link might help in finding a geneticist. By the way your doctor is acting, you might want to find another doctor, too.
ghr.nlm.nih.gov/handbook/consult/findingprofessional

That's only for finding one in the US. I'm not sure where you're from, but I hope this helps.
When calling for a geneticist, you might want to ask if they've had experience diagnosing Hereditary Fructose Intolerance--or see how open they are to test for it.

I have quite a few cavities, as does my HFI brother. We both had poor teeth-cleaning habits (not anymore for me) and we both ate HFI-safe candies like they were going out of style. So it's possible. Genetics also play a part in what TYPE of teeth were passed onto you. I have friends who had really soft teeth and had to get all new veneers.

If I were you, I'd avoid eating out at all costs. Stick to making your own meals until you feel confident--even then it usually ends in disaster with me. Plain macaroni & cheese is the safest bet if you're forced to eat out.

[julienc]

Ditto everything Fred just said. I wasn't diagnosed until I was 30, but it was obvious something was "off" since I was a baby. I never ate fruits or anything sweet without getting sick...ever. Therefore, I also developed a severe aversion to all sweet foods.

My GI doc also was very skeptical that I had HFI - he said I would have been in and out of the hospital constantly as a baby if actually did have HFI. In truth, I was lucky to have a mom who didn't force foods on me and somehow managed a way to find foods that didn't make me sick.

As Fred says, it probably is not HFI if these symptoms didn't pop up until later in life. Dr. Tolan's lab will run blood tests for you for a fee via your regular doc, which would eliminate the need for a geneticist. I don't know the link off hand, but it's all over this message board. Good luck.