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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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