Ok, first off take a deep breath…
second I would strongly advocate for a visit with a metabolic specialist
ASAP. If the Drs aren’t game, tell them you want it just to be sure, to
scratch it off the list…say whatever you have to…just get in there!
ok, there are (as you know) several forms of FI. DFI, being the most common
in the discussion groups, it deals mostly with GI issues. Since I don’t have
it, I don’t mean to simplify or minimize it at all…but that is largely the
bulk of what they deal with. I have read about several people that also
deal with low energy and fatigue as well.
The more complex FI forms deal with a lot more. They are metabolic issues
not digestive issues. This means that you will be dealing with an upset to
body chemistry as a result of ingestion of fructose not an upset to the GI
tract (although that can also happen). That reflects differently in
different people, and probably defy logic in children versus adults. As
often happens when children ingest a substance that reacts one way with
adults, it has the opposite or completely unexpected result in children.
When dealing with a substance that (although a food) the body isn’t able to
metabolize, I don’t think it’s far fetched to see crazy and unique
reactions…just working off logic here.
Ok, in addition, all you need to do is read some of the posts from the FI
forum and you will see that infact your situation is not at all unique.
His coloring sounds a lot like low blood sugar to me, it can also be a sign
of seizure activity, so be careful!!! All of which would be clues that
Zach is dealing with a metabolic version of FI versus DFI.
So, assuming that’s true, and again I’m not a Dr…there are a couple
things you need to look at to determine which hereditary form of FI you are
dealing with. Now, nothing is really carved in stone, but a couple things
Aldolase B deficiency will experience GI and BS issues, but depression and
withdrawal has also been mentioned by a few…
Fructose 1, 6 Bisphosphatase deficiency is like the above but also deals
with reactions with long stretches between meals, and must also limit fats.
Some Drs say eliminate fructose 100% some say it doesn’t need to be
restricted as much as Aldolase B.
D-glyceric aciduria is alot like above, but there is also some protein
restrictions and has a lot more noted as far as neurological issues.
Now…sorting out which from which (in the absence of a definitive test)
means time and trials. But at the same time you are dealing with a
polluted/damaged body. Your first goal is to get Zach to base line, then
you can try to determine what’s what.
Before I began restricting Coley’s diet I thought he was tolerating all
sorts of things that I now know he wasn’t. Even after I began restricting
(and realized I didn’t have my facts straight) I though he was handling some
things: nuts, whole grains and legumes (which are all no go’s!)…course I
was comparing him to the kid that was eating all sorts of fructose all
day…him reacting to just those things was a HUGE improvement behaviorally,
emotionally AND developmentally…but when I corrected my mistake…hello
an even bigger improvement!
We had a period of time when dairy and corn products were an issue
too…that has passed, but I’ve read about it in others too…sure Zach
could have sensitivities to more than fructose, but there is a very real
possibility that his body is just all banged up and as a result things that
should be ok, aren’t.
Sorry to say, there is really only one way to figure it out…
alright, as for those fries…I can’t tell you what the heck goes on with
those things…my best guess is trace contaminants…you are SOOOOO not
alone with reactions to fries in the beginning!!! Although it may be the
oil, as many of us have seen issues with certain oils too…our worst was
with hydrogenated types…
If it’s any consolation, we just ate mashed for a few months…we are past
that now…although he prefers McCain’s steak fries now over all those
toddler types he used to love, you know before restriction…
so, with all that, I’m going to repeat…restrict everything…keep it
simple: plain meat, plain fish, plain pasta, plain rice, plain
potatoes…and build from there. Find Zach’s happy place, and see what else
you can add…I know that doesn’t sound very encouraging, but trust me, when
he feels good he won’t want more than that!
I hope this helps!
----- Original Message -----
From: “kimber” email@example.com
Sent: Thursday, August 02, 2007 10:34 AM
Subject: Re: [fructose-intolerance] What to eat?