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COELIAC WAS Re: [IPk] Bank Holidat Monday
With Sasha the most noticeable thing was that she would hypo just after meals
especially in the evening when the insulin "got there" before the food was
digested. We first noticed this getting worse after she was hospitalised
after a tummy bug (the tummy bug had nothing to do with having coeliac). We
all had the bug but Sasha's gut seemed to take ages to be normal. She would
go low after eating the same amounts as previously with the same or less
insulin. I kept telling my D nurse over and over, all she did was change the
insulin which didn't help. We struggled with hypos that wouldn't respond to
the usual drinks of juice or glucose tablets. I spend ages on the internet
looking for clues and dismissed coeliac at first because she had no diarrhoea,
stomach aches, bloating, or any of the other bowel symptoms that closely
resemble IBS. Coeliac is often misdiagnosed as IBS if tests are not done.
What the symptoms did resemble were gastroparasis (sp). But as she has only
had D for 3 years I didn't really think it was that either. I spoke at times
to another mother on a Aus diabetes list whose son had both conditions and
slowly I began to think that Sasha did have coeliac. Sasha sometimes passed
stools which were pale and broken up and floated but as Beckie's (non D
identical twin) bowel movements looked similar I still wasn't sure. Anyway
after talking with other mums I decided that it seemed quite possible that she
did have coeliac after all. I was annoyed as the D nurse had never once
suggested that Sasha might have this condition or suggested testing for it.
A test for this condition is supposed to be routinely done a year after DX.
We spent six months struggling with this, unable to leave Sasha with a
babysitter because we never knew if she would have a bad hypo when we weren't
there. It was no good giving less insulin either because her bg would go high
later. We were having to inject Actrapid 30 minutes after she ate to get a
better result and not once did it ring alarms bells with the D team. In the
end I when to the next clinic and said what I thought was happening and that I
though it could be coeliac. The first step in a blood test which came back
positive. It is possible to get false positives so then because the diet is
so restrictive it is necessary to do a biopsy to confirm coeliac. As it is a
life long restricted diet you need to know that this is medically necessary.
Untreated coeliac can sometimes lead to bowel cancer and osteoporosis. Gluten
is found in Oats, Wheat, Barley, and Rye Spelt.
A blood test looks for anti endomysial antibodies, there are other blood tests
but this is the most common. A biopsy takes several tiny bits of tissue from
a few different places in the bowel. If the bowel has been damaged by gluten
the little villi, the small fronds of tissue that line the bowel, will be
flattened. It is this flattening and destroying of the lining that gives the
gut much less area to absorb nutrients from and leads to the symptoms which
range from the mild to severe. The twin's biopsy was done under anaesthesia.
But I think adults can have this done under mild sedation using an endoscope.
Sasha first biopsy was cancelled when she caught chicken pox a week before.
Beckies wasn't done for months after as the hospital couldn't give us an
earlier date. Whilst waiting for the biopsy the twins had to keep eating a
diet with gluten in. So basically their normal diet, as if they started on a
GF diet the gut may start to heal before the biopsy was taken.
Once on a GF diet Sasha's BG became much more predictable and she gained
weight, her insulin needed to be increased and one of the biggest benefits is
that we can now use Novorapid and hypos respond to treatment quicker.
Beckie didn't have any noticeable symptoms at all. Except for being very, very
tired and grumpy! Unfortunately this still hasn't improved a lot since going
GF. But at least we can tell her off for being grumpy and she can't blame
----- Original Message -----
From: "Zoe" <email @ redacted>
To: <email @ redacted>
Sent: 02 April 2002 17:20
Subject: Re: [IPk] Bank Holidat Monday
> Hi Jackie,
> what are the symptoms of coeliac disease? Are they similar to IBS? If this
> is the case, and I've heard most people with IBS benefit from a wheat-free
> diet, how is a differential diagnosis made? Did both your kids have to have
> an endoscopy?
> ----- Original Message -----
> From: "Jackie Jacombs" <email @ redacted>
> To: "Insulin Pump List" <email @ redacted>
> Sent: Tuesday, April 02, 2002 11:37 AM
> Subject: Re: [IPk] Bank Holidat Monday
> > Hi John
> > It is probably easier psychologically that both have coeliac as a least
> > both have to put up with the same restrictions. I dread the thought of
> > on holiday though with a suitcase load of GF food though. They both have
> > big moan together when we go to the supermaket about the things that they
> > can't
> > have that have not got a GF subtitute like crossiants and lovely fresh
> > bread and crumpets. I did have a go at making GF hot cross buns but for
> > the effort put into making them I didnt feel they were worth it. They
> were a
> > bit hard and dense. Still, it made the twins feel like they weren't
> > out.
> > When Sasha ate extra chocolate I went back to using Actrapid injected at
> > same time as she ate this seemed to work out OK. We use Novorapid mostly
> > I did once make the mistake last year when she wanted an ice-cream one hot
> > after school and her bg was a little on the high side. I gave some
> > and made her wait a 30 minutes, big mistake!!! Of course the insulin got
> > there first.
> > Jackie
> > > Hi Jackie -
> > >
> > > Sorry to hear that Sasha's sister also has coeliac disease. Never rains
> > > pours.
> > >
> > > I had a reasonably chocolatey Easter. I tend to bolus 2/3 of the insulin
> > > straight away, and the final 1/3 maybe 2 hours later. I'm told the fat
> > > content slows the carbohydrate absorbtion down substantially.
> > >
> > > John
> > >
> > > --
> > > mailto:email @ redacted
> > > http://www.webshowcase.net/johnneale
> > > ----------------------------------------------------------
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> > ----------------------------------------------------------
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> for HELP or to subscribe/unsubscribe, contact: HELP@insulin-pumpers.org
> help SUPPORT Insulin Pumpers http://www.insulin-pumpers.org/donate.shtml
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