New to the Board - 8 year old daughter - HFI?

[colormist]

Hi Sherry,
If you want to proceed with a HFI test, all you need to do is talk to your PCP and ask for a referral to a geneticist (or any doctor that would test for HFI). I see you're in Ohio (not sure where), but I know for certain that OSU's hospital can perform the procedure and send your kid's blood (or saliva--whatever they're using nowadays) off for testing. They might also want to test you and your husband (sinceHFI is a genetic issue).

I was testing in Ann Arbor (which might be closer for you if you went to Cleveland Clinic) and they recommended having my mom & dad go to OSU for follow-up testing (to map the genes). My parents live in SE Ohio.

The worst part about the test is that most insurance companies won't pay for the test, so you might have to pay for it out of pocket. The cost varies from lab to lab. It's in the hundreds, though. About the price you'd pay for a new laptop.

However, if you daughter does best OFF fructose entirely, then it's best to keep her off fructose. That's actually the full treatment for HFI--completely off fructose and sucrose. It's harder to manage than you'd think (manufacturers sneak sweeteners into everything), but it does get easier with time. I still have slip-ups and I'm in my 30's.

[colormist]

Hi Sherry,
I'm originally from Pleasantville (outside of Lancaster). My parents later moved to Mount Perry (nearish Somerset). My parents now live near Malta/McConnelsville. You don't happen to have any Garretts in your family tree, do you? I have a theory about HFI and my family tree and I think it all might point back to one particular family from Ireland.

On to your questions, I have compiled several lists on my blog of things that are safe and not safe. Here is the ingredient list: fructose-free.tumblr.com/post/15777874026/which-sugars-to-avoid-with-hfi

I also started a Pinterest board (with pictures!) of things that are MOSTLY safe to eat (please read my notes on each item). pinterest.com/colormist/fructose-free-diet/ I think listing things that are safe to eat is an easier task than listing things that aren't safe.

Sucrose is not safe. This is the problem with going to dietitians and doctors about this condition. They don't know enough. My geneticist said he couldn't help me (after I got diagnosis) because I already knew more than he did. Right now, you know more than the doctors do and your daughter knows more than you do (she might just not realize it yet).

[charlie]

Hi Sherry,

When Cleveland gave us the 9 page list of dietary restrictions it said that sucrose (table sugar) was safe. Is there information somewhere on what really is and is not safe? This is a lot to absorb!

They gave you this info as the current treatment for fructose malabsorption which is what they have so far diagnosed by the breath test is what is called the low fodmap diet. This was started by a dietitian in Australia and basically works on the principle that foods that have equal fructose to glucose ratio are ok eg sucrose (table sugar). I think for adults with mild FM that is fine but for kids we are all finding that this is certainly not right and they are best on as low fructose as possible.

The breath test seems to be the first diagnostic stop for alot of these kids and shows they have a fructose tolerance problem but doesn't seem to get to the bottom of it. If your daughter is very reactive then you are better to push to eliminate HFI first by a gene test and then further bloods if this doesn't show a clear mutation positive.

But the main diagnosis will be made at the end of the day by you, her mother. We all go through this trial and error period starting with as complete exclusion as possible of all fructose and sucrose as well as all the other sugar alcohols etc. We were told to do this for 4 years then try re-introducing (she was 5 at the time). We tried reintroducing and that was no good so we are back to the drawing board, and proud members of the "grey area club"! at the moment.

Our next step is a sucrose challenge test as they are now looking into CSID (sucrose intolerance) - I asked about this in May................. just got booked in now................... Things progress very slowly in this world..............

But stick in there, best advise, go with your instincts and keep a very clear diary of food, sleep, poo, moods etc etc etc as otherwise your memory gets very clouded............