Questions about HFI

[jennifer]

Hi, I am new here and have a daughter that has been diagnosed with FM and lactose intolerence via breath testing. This forum has been extrememly helpful to us as we are trying to figure out what is safe for her to eat, and having such a hard time. When she was eating fructose her symptoms seem to have progressed and became more severe(waking at night in pain and vomitting) She is only seven and did have a similar issue several years ago with intermittant stomach pain which they initially treated with reflux medication. She did go through periods where she seemed to be able to tolerate fructose and now it suddenly became worse. We are trying to decide if we should test for HFI, the doctors said she would have been much sicker if she had HFI. I am wondering if anyone with HFI ever had periods of time where they were able to tolerate furctose, or would it have made her sick consistantly? With the elimination of fructose her acute episodes have stopped.

[colormist]

Hi Jennifer!
First, welcome to the forum. We all try to be as helpful as possible, but we're not medical professionals. HFI seems to be mostly a "pay attention to what your body is telling you" condition, since our bodies do a pretty good job at instantly reporting things that are wrong.

That being said, if your daughter functions best off of fructose, then it's best to restrict fructose until you have a confirmed diagnosis.

As a child, I ate a whole bunch of stuff I'd never be able to eat today. I didn't (and my parent's didn't) know any better, so I just ate what I wanted to. I would try cake and ice cream, but never eat all of it because I'd start to feel bad. I would keep TRYING to eat things I couldn't because I thought I was weird otherwise.

HFI is a lifelong condition. You're born with it and you die with it. Your liver lacks the enzyme to process fructose, so fructose is more like a poison to people with HFI. It will always make us feel very ill (vomiting, stomach pains, hypoglycemia, sweating, binge eating). There are no periods where we can sporadically digest fructose or even tolerate it. In fact, once fructose is completely removed from the diet, we become even MORE sensitive to it in our food.

As I child I ate all manner of fructose-having foods because I didn't know better. I always felt ill (even though I didn't know it) and didn't know what feeling healthy and normal was like. I tended to instinctively prefer foods with LESS fructose, but I didn't completely remove fructose from my diet until a few years ago when I discovered my diagnosis.

There are two typical reactions to ingesting fructose:
- Near instant: Say I ate a slice of apple (which is loaded with fructose). I would feel nauseated within a few minutes and either begin wolfing down starchy/dairy foods or I'd vomit. I would definitely suffer from hypoglycemia for the next week while the fructose leaves my system (via my overworked kidneys)
- Delayed: Depending on the fructose/dextrose ratio, I might not realize what I ate was bad for me right away and depending on how much I ate it might take a few hours to a day to realize. HFI bodies gobble up all the safe stuff (dextrose and other edible bits) and set aside fructose for processing later (kind of like pushing off all the hard work til last). Once there is only fructose left, the body wants to get rid of it. It feels like you just ate some chicken with salmonella poisoning.

It is possible your daughter has HFI, but her diet isn't completely restricted (fructose-free). You would be surprised what has fructose in it. This forum has been around for a few years now and we're still discovering things that we formerly thought were safe were actually soaking in fructose.

Having a positive FM breath test does not rule out HFI. If you can get a referral to a geneticist and check her DNA for HFI, I would recommend it. Doctors don't really know that much about HFI. My geneticist said I would have died as a baby. I would like to reassure you that I am not dead (yet) and it is very possible for someone to go their whole life without realizing they have HFI and just be convinced that they are a very picky eater.

[charlie]

Hi Jennifer,

welcome on board!

It looks like Colormist has covered well most of what I would say too.

The only bit of extra info I would add is dependant on how your daughter used to be on fructose foods. If she used to be able to have any when you started weaning and it is only recently that you have noticed problems then it will be more FM as this can develop after say a gastric flu or bacterial infection (can trigger screaming tummy pains). But if she has always been sensative its just no one has put two and two together until now then it could be either condition but safest to exclude HFI first. So the best course of action is to eliminate as much as you can and see how things go, but seek proper medical advice too.

The safest first step is the gene test. And elimination diet.

[jennifer]

Thanks so much for the information, really this board has been so helpful to us. Charlie, my daughter was extra colicky as a baby for at least a year and a half. She then had another rough time at about three years old which seemed to get worse and worse until she couldn't eat or drink anything and landed in the hospital for a few days. After that prevacid seemed to help for a while until a year later the stomach aches seemed to return and slowly progress until recently when she got to a point again where she was eaking up screaming in pain vomitting, and then would be ok for a few days and it would happen all over again. The docs have ruled out celiac with blood work and endoscopy and have come up empty accept for the positive breath tests. Her vomitting episodes have stopped with the diet that we think is about as free of fructose as we can possibly make it(thanks to the great info from all of you guys here), right now we are being very strict so we can heal her system. Following the lactose breath test she became very gassy right away, the symptoms lasted one day and then went away, however following the fructose breath test, she was not gassy and symptoms did not hit for twelve hours following the test. That night she again woke up in pain and vommited. The days that followed had her tired(not lathargic though) and complaining of headache and stomach ache. Does anyone know if a perscription is needed from a doc to do the dna testing or can you just get it done? Our GI doesn't seem to say anything about testing and we have brought it up to her, but her liver levels were ok so they say she probably does not have HFI. I am just not convinced. Thanks again!

[colormist]

Hi Jennifer,
Do you know what type of solution they used for the fructose breath test? Was is fructose (straight up) or Sucrose (fructose/dextrose mix) or something else? Sucrose would give her a delayed reaction like that.

You can either pay for the test out of pocket or get your doctor to do some clever billing so the test is mostly covered by insurance. I think they can do the test via mouth-swab nowadays. If you're not financially strapped, it might be easier for you to just send off for the test yourself (and omit insurance). This site has a lot of info about getting tested: www.bu.edu/aldolase/HFI/

Good luck!

[jennifer]

Colormist, Thank you for the link, I will check it out. I think I would feel better if we know before we try to add fructose back into her diet as the docs are now suggesting. She has only been off of it for three weeks, it seems to soon to me to add it back.

I am not sure if she drank pure fructose of not, they didn't write in the amount they gave her either just her numbers which climbed pretty high. It just seemed to be a very different reaction then when she had the lactose test a few days before.

[lukesmom]

Hi Jennifer,

My son Luke is age 7 and has confirmed HFI through DNA bloodtest at Cedars in Los Angeles. Have they done an ultrasound on her liver? Luke's bloodwork was good, but when they looked at the liver it was extremely fatty and very enlarged. The doctors had missed this on feel of the abdomen.

We did not need a prescription for the testing. We made an appointment at Cedars with the metabolic specialiest (genetics office) and they took the blood right there in the office. Also, it was covered by our insurance.

Before Luke was diagnosed he ingested alot of fructose and sucrose. It's the reason we finally figured it out! It SEEMED he could tolerate it, but really we were damaging his body badly. His liver is still not normal all these years later.

Please dont hesitate to contact me with any questions!

[esmee]

You should read the interview that colormist did with Tammy about her daughter Regina here:
fructose-free.tumblr.com/post/18072270967/an-interview-with-tammy-of-pennsylvania-usa

Regina did not get sick from any of the fructose she ate as a baby or toddler, but she almost had liver failure by age 2.5. So, it is not absolute that nausea and vomiting will occur immediately after ingestion of fructose. Now, as an adult, Regina will become very ill if she eats frucotse, but her response is delayed and may not occur for several days after eating fructose.

[jennifer]

Lukesmom that is so interesting that his liver levels were normal and they only saw the problem on ultrasound. We see a top gi specialist and I think they feel since the liver levels were normal that we are dealing with fm rather than hfi. I think I will try to get the dna test though since I will not feel comfortable reintroducing any fructose until we check for hfi first. As of now, the doc and dietician are saying that we can advance her diet and slowly reintroduce small amounts of fructose. She has only been fructose free for three weeks and is finally sleeping through the night and not waking up screaming in pain and not vomitting. For my daughter her issues seem to slowly get worse over a period of months until they get so bad that she really can't function anymore. This also happened to her when she was three, but somehow improved after that for a while. Would a geneticist be more likely to look for HFI than a GI doc?

Again, a huge thanks to everyone here. From all of the food info, to just hearing other's experiences with this, we feel we are not alone and can get through this. So many other people just do not seem to understand or support our taking this issue seriously, so this forum has been a huge help, thanks!

[jennifer]

That sounds like good advice thank you Fred. I think we will try to stick with one trusted doctor to manage all of her care.