HFI and DFI difference?

[redas]

Hi
I would like to know what are the differences between HFI and DFI?
I can't find answer on internet.

Another question I would like to ask
Does those with HFI, in theirs teenage/adult age necessarily experiance side effects like vomiting, convulsion... after consuming sugar/fructose, or maybe it can cause only side effects that are not externally visisble.

[charlie]

HFI is basically a liver problem where the enzyme is missing to break down and store the fructose properly whereas DFI or Fructose malabsorbtion as it is better known is where there is an absence of the protein carrier to transport the fructose through the large intestine lining so it builds up an bubbles away as an irritant. wikipedia is quite useful for a brief description.

Yes, it would appear that both conditions can cause vomiting and possible convulsion like symptoms in some. My daughter has sever vomiting if she has alot of fructose and stomach spasms with a little, black outs, mood swings, terrible sleeping and incontinence, she is 7.

Give us your story and we can maybe help you figure out where to go for help, and where in the world you are as this makes a difference in foods and diagnosis.

[colormist]

From what I've read and heard, HFI is a genetic condition, so you'll have the symptoms from birth.
DFI is something you can develop over time and doesn't have as strict of diet. I think there are a one or two parents on the board who have kids with DFI. They could speak more on this topic.

The only reason that I was able to convince my geneticist to give me the HFI test was that I had it from birth and my brother also had the same symptoms.

[jdsmommy2009]

so if i were to have another child this child would have HFI i here most people have 2 kids with it or all kids are as brother n sister with it what are the odds and how may of you have this or know about this

[colormist]

The odds are 1 in 4 that your child would have HFI--but only if both the parents are carriers of the gene. Both parents need to be carriers of the gene in order to produce a HFI child. Even though I have a brother with HFI, my sister does not have HFI. I think it's more unlikely to have more than one child with HFI (unless, of course, you have more than four children).

My brother and I survived 20-odd years without knowing what we had, so the kids may be labeled horribly picky eaters but they're only doing what their body is telling them to do--even when they don't know why exactly they eat that way. More problems arise as curiosity and intelligence and desire to "fit in" come into play. As a preteen I would try to eat chocolate and cake because "everyone else was doing it." Then as an adult, I would try to drink fancy alcoholic drinks and eat all my fruits and veggies because "that's what you're supposed to do". That's when things got bad. Otherwise, I was a pretty normal, stubborn, and feisty child.

[jdsmommy2009]

ok so in order for me to have a child with HFI we both have to be carriers of this we both dont knoe of any one in our family that have or have this its scary could we both have it or one of us have this how would we know what do we look for?? these are the quiestions that i would like to know

[Tammy]

If your child has HFI, that means you and his father are both carriers. No question. You are both just carriers. If you had HFI, you'd be eating the same way your son has to. You would have known all your life that you were different. You might not have known why, just that you couldn't eat everything everyone else does. IF you have any more kids together, they have a 25% chance of having HFI.

[colormist]

It's not really that scary jdsmommy.

You wouldn't know if you were a carrier of the gene. My parents certainly didn't know. They also didn't know I had a problem until I told them the specific reason WHY I didn't like sweets. They knew I didn't like certain foods and didn't force me to eat those foods.

If you notice you child refusing certain foods regularly, then I (personally) wouldn't try force feeding or continuing to try those foods after the first couple of attempts. A lot of HFI parents report that their child sniffs food before trying it (to smell out the sugar).

[julienc]

Jun 9, 2010 19:23:28 GMT -5 jdsmommy2009 said:

ok so in order for me to have a child with HFI we both have to be carriers of this we both dont knoe of any one in our family that have or have this its scary could we both have it or one of us have this how would we know what do we look for?? these are the quiestions that i would like to know

Ditto what Tammy and Laura have said. That's the challenging thing about HFI. Carriers show no symptoms, and typically there is little to no family history of the condition since it's a recessive disorder. Just...whammo...it'll show up in a child. As stated, a 25% chance of occurring if both parents are carriers. My parents had two kids, and we both ended up with HFI. We beat the odds, lol.

Good luck, jdsmommy. It all may seem really scary right now, but fortunately there are a lot of resources on this board.

[jdsmommy2009]

thanks ladies u ave been wounderfull to me and thanks for all help u obeously know more than what the docs do........ how often do you have to go to the diff docs and all these appointments its crazy im always on the phone and at a doctors office and thats hard beacuse i work 9 to 5:30 and they wont let me go to any more they say that i need to have someone eles take him n i have his dad take him n he ssay i do nt know what they said so ......?

[colormist]

I went to my PCP once to ask to be referred to a geneticist and twice to the geneticist to hear them tell me the first time that I was crazy and didn't have HFI and the second time to hear them tell me they were sorry they didn't listen to me and that I actually knew more about my condition than they did so they really couldn't help me.

Other than that, just my annuals and any odd illnesses/colds.

Maybe if you have his dad take him in, have the father video or audio record the session--or take LOTS of notes?

[meaniejean]

I am one of ten kids, but only two of us appear to be fructose intolerant (actually, I was diagnosed as FDPase deficient - a close cousin to HFI). Since I am fructose intolerant, our kids had a 75% chance of also being intolerant - and both of them are.
Since identifying the problem as fructose we have a lot fewer doc appointments. Most of what we go for now is other "unrelated" health problems such as hypothyroidism and what appear to be clotting/vascular issues.

I think recording the doc appointment is a great idea. Most cell phones now have a voice recorder built in.

Good luck!

[jdsmommy2009]

thanks yea hes trying lol but you know how that goes so i will deff do that and buy a tape recorder that way i can listen to it and know what to do i just hope that the docs are ok with that

[sarosh]

What is the difference between HFI and FDPase deficiency? Do you have an aversion to sweet things as well?
Sarosh

[jdsmommy2009]

so we went to the genetics doc yesterday and they told me nothing they said that they ahve to do more testing and that YEP they said his liver feels swollen again ughhhh y me? then the damn nutritionist gave me ONE paper that wad from the bosten unaversity that i already have like a million pages from :Pn said that he can have CARROTS ummmmmm NO he cant they have sugar in them n she said o0o0o0o thats new to me omg y cant i find someone that can help me this is crazy...... n my lil ashlys back in the hospital shes having problems

[colormist]

Oh dear. This was my concern when I went to the geneticist. That they would refer me to someone who would insist I could eat things I couldn't.

One suggestion for you to help the with diet (if you don't use this site already): www.nutritiondata.com/
Type in the food you're looking for in the top search bar, then scroll down to view the sugar breakdown. Here is an example with baby carrots: www.nutritiondata.com/facts/vegetables-and-vegetable-products/3026/2
Click to view more details in the carbohydrates section and review the sugars. WAYYY too much fructose and sucrose to even be remotely considered safe.

If you stick to simple foods, this site is really helpful. Have him drink lots of water to help flush out any fructose in the body, too.

[jdsmommy2009]

thank you sooooo much sry for cursing i was just sooo upset you know how i feel i just wish that i could find someone that could help that was close by but you girls have been wounderfull if it wasnt for you i wouldent know where to turn lol

[charlie]

Unfortunately the frustration is world wide. we had another dietitian appointment , came away with a prescription for a safe vitamin C. had to go to the docs 3 times to collect it as they kept losing it and eventually got it and there in clear print on the pot says "CONTAINS SUCROSE" . I should think you lot heard the screams from over there!!!!!!!!!!!!!!!!

I don't wish to be negative but get used to the frustration. admittedly it is not a widely understood condition but even so you get passed from pillar to post, but do you know what at the end of the day there is this board to come back to of "sane" people to help you through. So feel free to scream and curse as loudly as you like then laugh it over with us all as we have all been there. My daughter was diagnosed 2 years ago after 3 years of guessing but there are still unanswered questions.
We are waiting for a retest on the fructose challenge now and bowel biopsies Oh, and safe vitamins.

Good luck, keep your chin up

[colormist]

LOL, I didn't even notice your cursing.

And if you ever have any questions, you can always bounce them off the group. We're pretty good at coming to consensus and at least giving our opinion on the matter.

[jejns1]

Hi,

We have good luck with the "Nature-Made" brand of vitamins. My kids have reacted to several other brands that list ingredients that should be sage but did not work out that way. Even Centrum did not do well but the Centea-vire multi vitamin seems to be o.k.

Janice