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



Thanks Michele and Jackie,
I think the part I most struggle with, is that an experienced Medic  or
nurse might possibly tell by the poor health of Grace. All the staff
commented on how grace shone in November. The degree of brittle hair
possibly denotes duration of malabsorption etc.
I feel confident that sufficient gluten has gone in over 10 weeks already. A
few years ago, Brian was given the run around and two extensive
endocrinology workups in relation to a slightly raised TSH. Then, when Grace
was diagnosed I had to abandon my vow never to let an Endo near him
again..... I asked Grace's Doc to see him and the first thing he asked.. was
Brian on supplements at the time. I had even told my GP, A&E and the other
Endo about how his small goitre had reduced with colloidal minerals. All had
fussed about the TSH but didn't seem to have the experience to consider the
supplements and that iodine raises the TSH.
An experienced parent said that half a slice a day of bread is sufficient to
keep the gut irritated. But the team have told me it's crucial she have a
full normal diet of gluten. As a compromise we have spent the time since the
visit, saying "goodbye to Gluten"  Grace identifies a food and I tend to let
her have it ,one last time. I am struggling with the impulse to go ahead and
have the test early but I keep waiting to be sure that I am not trying to
prove a point rather than put Grace first .. I suppose I don't trust the
test, so, if it was inconclusive, then I want them to be sure enough to hear
me.
Thanks a mill for the space to rant.
Mir
----- Original Message -----
From: "Michele Couzens-Eason" <email @ redacted>
To: <email @ redacted>
Sent: 20 February 2005 14:35
Subject: Re: [IPk] reply for Miriam - gluten and BG control and omegas


> Mir,
> I feel for you and Grace, and it's a drag when you know what would help,
but
> it is true that if there's no gluten in the body then the tests will be
> negative and you're back to square one. Painful as it is, you'll have to
push
> for the biopsy to get 'official status'. It might only need to be a few
days
> on gluten to show up in the tests? I'm not really sure. Someone ought to
know
> though. Does Grace get stomach cramps and diarrhea on gluten? If so, you
can
> strengthen your case if your health care providers are sympathetic - as we
> know those symptoms cause blood sugar disruption, and I think most staff
are
> more concerned with DIABETES than with issues of the gut that have less
> understanding/importance!
>
> As for the dairy and juicing issues, it's not their fault I guess - their
> training doesn't cover it. I have to remind myself of this when I am
seeing
> dieticians etc as a patient, even though I want to scream.
> I wonder where your nearest nutritional medicine practitioner is - we
often
> have to liase with GPs etc on a professional basis. You might be lucky
enough
> to live near someone who is respected enough to be able to help you and
Grace
> get things moving faster?
>
> I'm sure that I'm perceived as a crank, but try not to lose faith!
(difficult
> sometimes though...)
> You'll get there.
> Kindest regards
> Michele
> ----- Original Message -----
> From: "Miriam Connor" <email @ redacted>
>
>
>
>
>
> > 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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> > > contact: HELP@insulin-pumpers.org
> > .
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> .
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