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RE: NOW Coeliac WAS [IPk] To Jos (glargine and Hypos)



hi jackie thanx so much for your reply,i will take jack to the docs, i
always worry taking them to the docs incase he thinks im just being a
paranoid parent,but i have had worries about it for a while .thanx for the
links i will check them out.
       love gailxxxxxx

-------Original Message-------

From: email @ redacted
Date: Wednesday, May 07, 2003 23:12:40
To: email @ redacted
Subject: RE: NOW Coeliac WAS [IPk] To Jos (glargine and Hypos)

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Hi Gail


The twins didn't have any major symptoms, some people don't for a long time,
years in fact. The thing we
first noticed with Sasha, about two years ago, was that she started having
more
hypos than usual. Then
she would sometimes hypo quite soon after a meal and injection. Things seem
to
get better for a time
then worse again and once, after having a tummy bug (we all caught it)
things
were so bad that we really
had to cut down on the insulin and give Actrapid, which we were still using
then, about 35 - 45 minutes
after she had eaten otherwise she would go badly hypo. We had to go to
hospital
a couple of times and I
had to use the glucagon kits twice. I could give juice of glucose tablets
but
they would take forever to
have any effect!!! The clinic didn't have any ideas of what could be causing
this. Coeliac didn't enter
their heads, even though our consultants wife is coeliac, presumably
diagnosed
many years ago.

I got talking to a mum on an Aus/New Zealand diabetes support group whose
son
had coeliac and diabetes
and the more that she told me the more I began to think that this could be a
problem. Sasha and Beckie's
poos were quite pale (occasionally almost white) in colour and sometimes
broke
up in the toilet, but it
wasn't diarrhoea, and there was no tummy aches. They both seemed to eat a
normal amount and seemed
healthy and lively enough, their weight was fine, though they have always
been
slim and Sasha has always
been skinny. They were both checked at clinics, Sasha for diabetes checks
and
Beckie for asthma checks
and they were growing normally still and putting on weight. I though that
because Beckie's poo was also
pale and looked the same as Sasha's that this meant that it was "normal for
them". Anyway the hypos got
worse and the more I read about coeliac and the diabetes links, the more I
thought that this is what it
was. I asked the clinic to do a blood test, which they were somewhat
reluctant
to do, and the results
for Sasha came back strongly positive (They were going to do Beckie later)
Sasha had to go to Oxford for
a biopsy which was found to be postive. Beckie eventually had a biopsy and
was
also found to be coeliac.
So you need not have major symptoms to have coeliac. If members in a family
have thyroid, diabetes
orcoeliac is always a possibility, as its another autoimmune disease. With
links on the same gene.

When I looked back on the summer before Beckie was diagnosed, I did think
that
she had a pot belly like a
younger child sometimes had and wondered about it.


A link about coeliac.

http://www.coeliac.ie/index.htm

I think from what you have said, that you do need to ask your GP to check
out
Jack, a blood test is all
that is needed initially. You can sometimes have false positives, so a
biopsy
is usually needed for
confirmation. Don't be surprised if they are reluctant to do this, as many
people I speak to on the Yahoo
coeliac groups, (including a GP who has two children with coeliac) say that
their own GP's seem know
very little about coeliac and are not aware that the symptoms can be very
mild
in the beginning. Some
people have been ill for many years and had been misdiagnosed with IBS. The
GP,
who post to that site,
says that she is still very surprised by the lack of awareness of coeliac by
her colleagues. I am sure
that the GP's who subscribe to this list are aware of coeliac though, I am
not
including them!

Have a look at some of the coeliac information you can find loads on the net


This is one of the boards. You can read but to reply you have to join the
group.
http://groups.yahoo.com/group/UK-Coeliac/messages

This is another board and you can read and post without subscribing.

http://members2.boardhost.com/glutenfree/index.html?999235741

I don't know how much you know about coeliac, but one analogy is that if you
think of the lining of the
intestines/bowel as a hairy carpet surface, lots of little villi that pick
up
the nutrients and absorb
the food, well if you have coeliac your body is attacking itself, because it
mistakes the gluten proteins
for harmful substances and the bowel gets inflamed and the villi get worn
down
and flattened. So like
comparing carpet to lino (vinyl flooring). now there will be much much less
surface area to absorb food
and minerals. Sometime anaemia is found due to malabsorbtions. It is really
necessary to have a proper
diagnosis rather than just trying to go gluten free.

1. because it's a life long diet and no one would really want to stick to it
unless necessary. 2. you
have regular checks at the hospital. 3. Not sticking to a GF diet can lead
to
loss of bone density, slow
growth, and make one more susceptible to intestinal cancers (not usually
found
in children) , sticking to
a GF diet is thought to reverse the risks) 4. If you are medically diagnosed
you can get some basic
things on prescription. Bread, flours, pastas, pizza bases and some biscuits

5. If your child has got
coeliac then they will soon feel much better if the go GF. Our food bill is
still really high as we buy
other stuff that you cant get on prescription for the twins and most things
like cake and fruit bread are
about three times the price of a similar non GF product.

Another thing that was interesting, is that before Sasha went GF she was
having
extra help at school with
reading, writing and maths, 3 months later, after the start of the GF diet,
we
were told that she had
caught up and didn't need the extra one -to -one help anymore. Don't know if
that was anything to do with
going GF, or not being hypo and out of it for long spells!!! She is still
not
as good at maths as
Beckie,(but has twice the energy) and is still much better at maths than I
ever
was! or will be.

Have a look at those coeliac boards. There are quite a few parents on there
that have quite young
children with coeliac. You could post a question to them and see what they
say.


Jackie

Mum of Sasha aged 8 dx 1999, twin sister Rebecca, both coeliac 2001
Mum also to Danni and Nicola, wife to Terry

>
> http://www.insulin-pumpers.org/donate.shtml
>
> Your annual contribution will eliminate this header from your IP mail
>
> hi jackie, yes i would have thought sasha would need some insulatard over
> night as well as i cant see it lasting,iv never tried that regime. the
> lantus i take at night, but normally at around 10.30- 11.30 which would
prob
> be too late for sasha, i find if i take it then i find it peaks at about 5
> 30- 6am but even at the peak i have found the right amount now and my bg
> rarely goes below 4. it only does that if iv exercised a lot the day
before,
> but the peaks are no where near as the ones i had on insulatard. hope u
> dont mind me asking but do your children have coeliac disease only iv been
a
> little worried about my 5 year old jack and have wondered a few times
> whether he may have it,he some symtoms,such as hes very tiny, doesnt eat
or
> gain weight well, hes always been sicky and gets bouts of diarrea, and his
> poos are often very pale, white in colour, he has always been fine in
> himself and has plenty of energy what do u think? love gailxxxxx
>
> -------Original Message-------
>
> From: email @ redacted
> Date: Wednesday, May 07, 2003 18:20:52
> To: email @ redacted
> Subject: RE: [IPk] To Jos (glargine and Hypos)
>
> Insulin Pumpers is made possible by your tax deductible contributions.
> Your donation of $10, $25, or more... just $1 or $2 per month is
> needed so that Insulin Pumpers can continue to serve you and the rest
> of the diabetes community. Please visit:
>
> http://www.insulin-pumpers.org/donate.shtml
>
> Your annual contribution will eliminate this header from your IP mail
>
> Gail
>
> Sasha's consultant has suggested either adding Novorapid at lunchtime
(Sasha
> can do her own shots now)
> or moving on the basal bolus routine. He said that I could still give the
> insulatard in the morning and
> not at night, but I don't think it would work like that and Sasha would
> definitely need some insulatard
> overnight I would have thought. Otherwise If I give her enough Insulatard
to
> last she will hypo in the
> morning before lunch, even with a big snack. Which is the problem that we
> have
> now. Though I suppose it
> wont be so critical to aim for a lunchtime BG of below 7.5 mmols as she
will
> be
> giving herself some
> insulin with lunch. Oh its so confusing!!!
>
> The consultant has only just begun 4 teenagers on Lantus and wants to get
a
> "feel" for how it works
> before letting Sasha have some. So we will try basal bolus with Novorapid
> and
> Insulatard for two months
> then we will try Lantus to see how we get on. Starting in the summer hols.
>
> When do you take the Glargine? Morning or night??
>
>
> Jackie,
> Mum of Sasha aged 8 dx 1999, twin sister Rebecca, both coeliac 2001
> Mum also to Danni and Nicola, wife to Terry
>
>
>
> > HI JACKIE, I HAVE TO SAY THAT GLARGINE HAS MADE A HUGE DIFFERENCE TO MY
> > NIGHT TIME BG.I HAVE BEEN ON IT SINCE CHANGING FROM INSULATARD LAST
AUGUST
>
> > WHEN I WAS ON INSULATARD I WAS FOREVER GETTING LOW AT 2AM, AND THEN MY
> > SUGARS WERE HIGH IN THE MORNING,NOW ON GLARGINE (WHICH I TAKE AT AROUND
> > 10PM) MY NIGHT LOWS HAVE GONE AND SO HAVE MY MORNING HIGHS, WITH
GLARGINE
> > YOU ARE MORE LIKELY TO GET LOWS IN THE MORNING THAN DURING THE NIGHT,BUT
> > WHEN U HAVE WORKED OUT THE CORRECT DOSE FOR SASHA THINGS SHOULD BE OK.
> > I WOULD DEFINATELY TRY HER ON IT AS I REALLY THINK IT MAY HELP HER STOP
> > GETTING THE NIGHT LOWS,OBVIOUSLY IF SASHAS DOING A LOT OF EXERCISE SHE
> WILL
> > NEED HER DOSE CUT ON THESE DAYS.
> > HOPE THINGS WORK OUT WELL FOR SASHA, LOVE GAIL(TYPE 1 22 YEARS, SINCE 6
> > YEARS OLD,MUM OF 3 )XXXXXXXX
> >
> > -------Original Message-------
> >
> > From: email @ redacted
> > Date: Monday, May 05, 2003 21:40:54
> > To: email @ redacted
> > Subject: [IPk] To Jos (glargine and Hypos)
> >
> > Insulin Pumpers is made possible by your tax deductible contributions.
> > Your donation of $10, $25, or more... just $1 or $2 per month is
> > needed so that Insulin Pumpers can continue to serve you and the rest
> > of the diabetes community. Please visit:
> >
> > http://www.insulin-pumpers.org/donate.shtml
> >
> > Your annual contribution will eliminate this header from your IP mail
> >
> > Just wondering about what you have said. This last few days I have had
to
> > reduce Sasha's evening
> > Insulatard each night because she has been so active in the last half of
> the
> > day. Skateboarding and
> > inline skating most of the day. This seems to work well as if I don't
> reduce
> > the evening Insulatard we
> > do get serious lows later and Sasha doesn't wake when she is low and
never
> > has
> > done. Tomorrow we go to
> > the D clinic and I was going to ask about Glargine, now I am wondering
if
> > this
> > would not work out well
> > for Sasha. As you said, once you have given it you cant take it out
again.
> I
> > suppose you could inject
> > glargine twice a day as some people do. Its easy enough in the day to
give
> > Sasha extra food if she is
> > active, but there's not much you can do if the BG levels are falling
> through
> > the night due to an active
> > day except keep giving her drink or food in the night. She wont always
eat
> a
> > bigger supper snack and
> > rarely eats much protien.
> >
> > This is really where a pump would work very well. But as you know our
> > Consultant wont hear of if for
> > Sasha, even for a trial!!
> > I will have to investigate how people manage a twice a day Lantus
regimen.
> I
> > suppose if Sasha had her
> > Lantus in the AM it would be wearing off toward the middle of the night
to
> > early morning and that is the
> > danger time for us.
> >
> > I have forgotten when you said Emily has her Lantus injection?
> >
> >
> > Jackie mum of Sasha aged 9 in 5 days,
> >
> >
> > > Maybe the difference is that we are warned to be careful
> > > about hypos as well as high BG's these days. Although I
> > > know 'dead-in-bed', brain damage and coma are very rare I
> > > can't help worrying about it, particularly since Emily has
> > > stopped waking with low BG's at night and we are still
> > > discover unexpected lows when we test at night. I know
> > > Emily wouldn't wake with an alarm clock to test herself and
> > > it seems a lot to ask of other parents. When Emily was in
> > > hospital over night recently the nurse had 4 attempts at a
> > > blood test before it worked! We couldn't even reduce her
> > > insulin really as the only active insulin at that time is
> > > the Glargine and it would have to be reduced for days
> > > before. I think we will have to rely on feeding her up well
> > > before bedtime if she really wants to sleep over sometime
> > > soon.
> > >
> > > Would a pump help avoid these night time hypos? I am
> > > beginning to suspect the main cause is exercise during the
> > > day and I assume we would be able to reduce the basal rate
> > > overnight if she has had more exercise during the day
> > > (unlike the Glargine).
> > >
> > > Bws,
> > > Jos
> > > --
> > > Mum to Emily aged 10, dx Oct '99
> > > Novorapid x 3 or 4, Glargine x 1,
> > > Robert aged 12 dx Mar '03
> > > Novomix 30 x 2 (+ Novorapid when hungry!),
> > > and Matthew aged 7.
> > > ----------------------------------------------------------
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> > > HELP@insulin-pumpers.org
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