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

Hi Miriam

When Sasha started hypoing in the middle of meals or immediately afterwards
the clinic had no idea what was going on.  I was on the phone to them every
few days.  No one even gave coeliac a thought and no routine testing was
done although now its recommended.  Many kids are asymptomatic.  That is no
weight loss, no diarrhoea.  The clinic didn't consider coeliac.  I read up
on all the symptoms of delayed digestion etc and discovered the coeliac
connection.  No one else in the family with RA, diabetes or coeliac.  Then
talking to another mum in New Zealand whose son has both conditions I was
pretty certain what it was but didn't want to know.  The more I read the
more depressed I became.  I had to exaggerate Sasha's symptoms to get the
hospital to run blood tests!!  Though we have suffered from about 8 months
of problems including Sasha hypoing at friends houses which has put off any
parents from ever inviting Sasha round for tea or playing after school!!
You are right many of the doctors don't come across coeliac when presenting
with few symptoms and many people go for years and years with poor health
after being misdiagnosed with being neurotic or having a different medical

Hope you don't have to wait too long for the biopsy.


> -----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
> In
> 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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