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Hi Debi~ Well nothing like hearing of anothers trials & tribulations to
make you feel like your problems are not so bad.

Interestingly enough I was feeling quite bad about having been diagnosed
w/ sprue & diabetes within a year of each other in my late 30's-- others
chimed in that from where they were sitting- having had these diseases
since childhood, I was *lucky* to have that many years free of it.

When you put it in that perspective...... I guess I am.

I have a great deal of sympathy for parents of kids w/ both disease because
this is hard!  You have to kind of "be the pancreas" for another individual
while under the influence of growth hormones......  and quell the small
intestine.  Jeesh!  As if parenting in & of itself were not hard enough.

So I applaud your ability to hang in there & try to ride the wave till
some semblance of stability occurs. diabetes is one of those tricky
diseases, and some stuff you just can't measure...... such as stress and
activity levels. You can't weigh stress, but it sure packs a lot of
weight in the bg department.

You wrote:

Well at least I am not alone, I am sooo tired of trying to give my daughter
foods that will accomodate her diabetes (insulin dependent since age 1) while
adhering to a gluten-free/ lactose free/casein(maybe) /no hydrogenated fats
/no soy ..and try to keep her Glucose levels stable!  Arg.


>>>>All the added stuff has to be *hellish* to try to navigate in the real
world (outside of the safe zone of your kitchen).  You have my full sympathy.
You must spend a lot of time in the produce section of the store!  Maybe you
can apply to the Guiness Book of world records for "read most labels".  Ok
having to decipher the fine print & know if something is safe is a real pain
in the patutti, but at least you should get some kind of credit and
recognition for this valiant effort.

Her blood sugars fluctuate from 3mmol/L  and jump to 26mmol/L

>>>Ouch--26 = 468 sky high!

Then the other day she has 2 major hypo-glycemic reations in a 4 hour
span... ate all her meals  but could not hold them down, other times she
doesn't eat her meals, gets sick to her stomache and glucose levels are
super high... no ryhme no reason except perhaps malabsorption I don't
know!!!


>>> That is a major problem.  I would go see the endo (hopefully a pediatric
endo) Schedule an appointment NOW-- you'll need it in 5 months!  But
seriously- there must be a way to have this dubbed more serious & bump the
appointment sometime sooner.  Squeaky wheels get the grease.  Make a fuss &
get in to see the doc.


Endocrionologist's are so busy here that it is at least a 5 month wait for a
10min.  appt.  ..  since her Dx of celiac we have not yet seen the Diabetic
spec.  , nor gastro....  she has had incurred kidney damage (ERF stage 11),so
we are afraid to give her to much protein in case it "taxes" her kidney's yet
we are afraid to give her too many carbs in case her intestines can not
handle it....

>>>You did not mention her age.  At any age, if she has kidney damage etc....
and having such wild fluctuations.....  something needs to be adjusted.  If
she's older, she may be a pump candidate.  (I can fwd a good article on that)
You need to have specific guidelines on the kidney care.....  If they won't
budge on an appointment, next time she has a hypo, bring her into the
emergency room.  One way or another.....  don't let this go on for any length
of time.  I understand the canadian medical system is different than US, but
you have to find a way to creatively get what you need.  Don't back off till
you do.


I love my daughter more than life itself and would give anything to have her
happy and healthy .  I would give my life for her........  She is My Hero ...

>>She's fortunate to have you on her side! YOU are probably HER hero!


I find myself standing in my kitchen just totally perplexed . food is
becoming the enemy!

HA ha ha.... it does seem that way does it not??!!

Sorry for the vent, I was about to implode!

I'm glad you did! That's what we are here for..... I was beginning to
wonder if this list was still functioning!

I bet we all of have lists of things we are *dealing with* specific to
this disease combo,
but nobody's talking!

~fran