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RE: [IPk] reply for Miriam - gluten and BG control

Hi Miriam

It wouldn't be any good doing the biopsy if Grace had not been on a gluten
containing diet for quite sometime.  Before Sasha went gluten free her
absorption was so poor that she was taking Actrapid  at least half an hour
AFTER she had eaten, normally you inject Actrpaid 30-40 minutes BEFORE
eating.  Sasha would have had to take Novorapid an hour after eating to
match the absorption of an average GI meal while she was still suffering
from the bowel damage. However it took only a few weeks before the gut was
healed enough to make the absorption rate normal again and to start back.
The bowel healed very quickly.  The last thing you want is Grace to have a
biopsy that is inconclusive because they take biopsies of tissue that isn't
damaged.  How long has Grace been back on a gluten containing diet.   Note
that you can still have negative blood test and biopsy and still have
coeliac.  Bloods test aren't always conclusive and while the biopsy is
supposed to be the Gold Standard test it is still possible for the biopsy to
miss damage bits where the villi are flattened.  They should take minute
tissue samples from different places on the bowel to be certain but
occasionally its still possible to miss the damage.  I find problems with
spikes immediately after meals especially breakfast and really Sasha needs
to have her Novorapid 15 minutes before the breakfast for the insulin to
work parallel with the absorption of the food, but for practical reasons we
usually give the insulin with the meal.  None of the lower gycaemic cereals
are suitable for coeliacs so we are stuck with the high GI stuff.  Also GF
pasta made with rice or corn or potato flour is not low GI like normal
pasta.  The GF pizza bases are not slow absorbing either.  Potato is also
high GI unless its roasted or chips.  All GF bread and biscuits are high GI
and there is always so much added sugar in any GF cakes or biscuits they are
always off the scale too.

Though we still get an HbA1c of about 7.3

How long was Grace GF for?  and how long has she been eating gluten?


http://www.ausport.gov.au/fulltext/2002/ascpub/FactCoeliac.asp Quote:
The only method to diagnose coeliac disease is via  a small bowel biopsy.
This involves a gastroscopy (passing a tube from the mouth into the gut) to
sample the wall of the small intestine.  Total or partial flattening of the
villi indicates coeliac disease.  It is important not to trial a gluten-free
diet before having the small bowel biopsy, as the villi may return to normal
and prevent a proper diagnosis.  A blood test is insufficient to diagnose
coeliac disease."

There have been several patients who post on the Welfed Gluten Free message
board who have in the past been misinformed by GP's and even by Drs at the
hospital that they can continue on a GF diet because blood test show they
might have celiac and assume the biopsy will still show flattening of the
villi when in fact the gut can heal really quickly and then the biopsy
results will be negative or inconclusive.

A GF diet is not something anyone would want to stick to unless there was
strong evidence that a GF diet is needed.  Its been even more of a pain at
the moment because of the number of times we have to go over to Glos
hospital and of course there are no GF meals in the restaurants and only
crisps in the shop.  Everywhere we go we have to take food for several meals
for the twins as we never know how long we will be there.  We were at the
hospital from 9.00 am to 2.00pm on Friday.  The GF bread is pretty ghastly
in the first place and even worse when its been in a lunch box for hours!

> -----Original Message-----
> From: email @ redacted [mailto:email @ redacted]On
> Behalf Of Miriam Connor
> Sent: 19 February 2005 07:27
> To: email @ redacted
> Subject: Re: [IPk] reply for Miriam - gluten and BG control
> Thanks Michele,
> To aid the pump start we went gluten free without testing and Grace was
> really balanced even though the foods are high glycemic++.
> Grace is on gluten now, awaiting testing and it is a nightmare as her
> absorption is the pits and sometimes spikes at mad times. I
> struggle too as
> the team won't trust my belief of coeliac and  insist on doing the bloods
> first whereas I would prefer to go straight to biopsy and save
> the amount of
> time Grace is being exposed to gluten. Ce la vie!
> Many thanks
> Mir
> ----- Original Message -----
> From: "Michele Couzens-Eason" <email @ redacted>
> To: <email @ redacted>
> Sent: 19 February 2005 16:28
> Subject: [IPk] reply for Miriam - gluten and BG control
> > Hi Miriam,
> > personally, I tend to correct high BG levels as soon as I get a result
> over
> > 10, and tend to check results about an hour and a half after food. I do
> rely
> > on the basals to get it right though, and change them several
> times during
> the
> > month (which shouldn't be appropriate for Grace for a long time yet of
> > course!)
> >
> > Why do you expect control to be more tricky with totally
> gluten-free diet?
> is
> > it because the foods tend to be higher in carbs?
> > I haven't noticed any relationship to being coeliac and
> diabetes control I
> > don't think. Other coeliacs could probably be more help. Joy who has
> recently
> > joined the pumpers list  probablyhas more experience of both
> than I have.
> > Michele
> > .
> > ----------------------------------------------------------
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> > contact: HELP@insulin-pumpers.org
> .
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