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



Thanks again. Got time to look it up and thankfully Grace doesn't pass the
physical!
Mir
----- Original Message -----
From: "Jackie Jacombs" <email @ redacted>
To: <email @ redacted>
Sent: 19 February 2005 23:32
Subject: RE: [IPk] reply for Miriam - gluten and BG control


> http://coeliac.info/suppboard/viewtopic.php?t=1374
>
> More coeliac stuff
>
>
> Jackie
>
>
> > -----Original Message-----
> > From: email @ redacted [mailto:email @ redacted]On
> > Behalf Of Miriam Connor
> > Sent: 19 February 2005 10:28
> > To: email @ redacted
> > Subject: Re: [IPk] reply for Miriam - gluten and BG control
> >
> >
> >
> > Sorry lads, the following  is a bit of a rant... a big bit.
> >
> > Thanks Jackie,
> > Nah,  ( sadly) I had read enough on CWD to suspect by the end of August.
> > There was so much silly beggars about the pump that I knew this was
ahead
> > but I opted for the pump and to test later. I was so neurotic
> > about the pump
> > that I opted for GF as I was afraid they would use the erratic
> > picture as a
> > reason to take back the pump . In reality, my sense is that their
> > knowledge
> > around coeliac and Diabetes is a tad less than that on list! Anyway,
Grace
> > thrived on GF and gained 5.5cm in five months. Grace is in her 99
> > percentile
> > so, being tall, the team seemed to dismiss my initial concerns around
> > coeliac before pumping. My frustration is, that I reintroduced gluten at
> > Christmas/...from first Christmas party on Dec 7th. Immediately Grace
was
> > complaining of leg cramps and stomach discomfort. She had gluten
regularly
> > but not every day, four to five times a week whenever any one offered
her
> > something and if she craved a cereal or equivalent. On the basis
> > of "letting
> > go" gluten and getting Grace used to the idea that it was coming
> > to an end.
> > About two weeks before official testing I laid the gluten on
> > thick and Grace
> > deteriorated big time. She looks woeful, her hair is a mess ( brittle)
c/o
> > pain all the time. Pale pasty stools. The day before the visit
> > /?test Grace
> > attended a party and had 150 CHO in about 20 mins- all goodies.
> > Muggins here
> > never brought lucocade as I knew there would be fizzy drinks etc and I
> > wasn't bolusing very aggressively due to the poor absorption. As
> > we left the
> > party Grace was complaining of symptoms that, given the circumstances I
> > presumed "high". Got to a nearby Dept store and did check. 2.4mmols
> > The ladies in the Restaurant were fantastic but it took 45mins to
> > get Grace
> > up enough to get the tram home. Next day, I go to the clinic visit. I
say
> > ifeel there is an issue around coeliac and as I tried to explain why,
like
> > day before, they kept interrupting and focusing on her not having
floaties
> > and diarrhoea. I reassured them and mentioned that Gluten had been
regular
> > but limited up to the two weeks. I was told "six solid weeks of
> > full gluten
> > diet". My problem is that six weeks now actually means another eight.
> > Allowing two weeks for the pre visit Gluten. After another four weeks
> > they'll check her bloods and it apparently will take up to two weeks for
> > results and then she would be listed for biopsy......only 12 kids done a
> > week and it is the National hospital and obviously kids bleeding  will
get
> > priority. Aware that the blood test may not be conclusive, I
> > would prefer go
> > through the four weeks of gluten and arrive at the biopsy. But
> > when I tried
> > to suggest it, the hardest part was the assumption that I haven't a
clue.
> > even insisting that she has had gluten in the time since mid December.
> > The night I left the clinic Grace was 2 everytime  I checked her,
> > all night,
> > pump was on 0.05 and Grace had over 100mls of lucocade. The team seem to
> > have very little understanding of Diabetes and Coeliac. The Reg
> > kept saying
> > "But you say she has no loose stools. I reminded her that Diabetes meant
> > that the presentation often is asymptotic, other than lows after
> > eating and
> > for Grace, leg cramps. The Consultant seemed to feel that Grace gaining
> > 5.5cm was a question mark over the C.???   Aaagh, I told them she
> > was GF at
> > the time and that that was one of the reasons I felt a test was
indicated.
> > I emailed the pump Nurse  and her reply was she would talk to me
> > when I came
> > in four weeks later for the check. I rang the Reg and tried to get her
to
> > hear that Grace has many symptoms and that I wish I was wrong but I have
> > lived with allergies and food intolerance's for 9years and my gut tends
to
> > be strong. Eventually she conceded that whenever she was
> > referring Grace for
> > the biopsy she would state my concerns that I feel Grace's unstable
sugars
> > are in part ,to do with the coeliac. But "we will only be doing that if
we
> > get a positive!!"
> > I do get that it is a vague picture for them but I feel very isolated as
I
> > haven't a lot of faith in the Dietician and the Pump Nurse doesn't
really
> > want to know. Although I pushed for the pump I rarely ask for anything
and
> > just feel weary. I suppose I often feel that if they doubt my ability so
> > much surely they should be looking to put Grace in care... rather than
> > releasing her to be minded by this overzealous dubious theoried
> > mother. What
> > do they think that we do with our kids? When I tried to stress the lows
> > picture to the Reg she said "you should talk to the pump nurse
> > about that".
> > I said, that at this stage, she trusted me to manage crisis
> > myself. I got a
> > dubious "Mmmm"
> > I know the system can't be ideal. I would accept that there is a
protocol
> > that must be followed ( just) but the bit that I found rough was the
> > ignoring what I was saying and asking me questions like " What do you
mean
> > her doesn't have diarrhoea?" Would they like a literal answer?
> > I appreciate the rant here but I feel that the team ( strange
> > concept) might
> > be there to connect at  the times I feel there is an issue, as I
> > am Grace's
> > primary carer but it felt like I was irrelevant and a bit of a
> > bother cos I
> > kept offering things like "She was GF when she gained the height".
> > So, Ce la vie!
> > I know no one has a monopoly on the truth but I stupidly still
> > believe that
> > Grace should have an monopoly on the commitment to her care.
> > I am trying to preserve some energy for the learning curve of pure
Gluten
> > free diet. Options here are very poor. There aren't even tortilla wraps
or
> > anything other  than Go Free dry foods.
> > In the past six years I have mastered Vegan diet, Gerson diet, Bristol
> > Clinic, renal diet, carb counting and now gluten. I figure there's a
> > dietician somewhere chuckling... for the bad thoughts I have had
> > sometimes.
> > I struggle with the limits of their training sometimes.
> > Thanks for the rant.
> > I hate putting the poison of gluten into Grace, she is such a
> > different kid
> > with it. But hey what do I know?
> > Thanks :-)
> > Mir
> >
> >
> > ----- Original Message -----
> > From: "Jackie Jacombs" <email @ redacted>
> > To: <email @ redacted>
> > Sent: 19 February 2005 20:16
> > Subject: 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.parkhurstexchange.com/qa/A.php?q=/qa/Gastroenterology/2
> > 003-09-04.
> > > qa
> > >
> > >
> > > 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!
> > > yuck.
> > >
> > >
> > >
> > >
> > >
> > > > -----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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> > > > .
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