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Re: [IPk] Re: Coeliac question



Our experience was, that starting pump meant I opted for my daughter to  go
gluten free, rather than delay the start. Advice from here meant I was
pretty sure there were issues with gluten, Almost immediately Grace sparkled
and we assumed that was all pump.
Three months later I was convinced Grace was a completely different child
gluten free as well. Grace grew 5cm in this time recorded by the hospital
( though the nurse kept checking the records saying that she couldn't have
grown that much)
.In the interests of working with the team I put Grace back on gluten. The
crazy bloods were exhausting as she would go low and during the night go
high. From advice here I understood that a slice of bread a day was
sufficient. Based on Grace's reactions I felt this was valid. Six weeks
later we had our review. To assist the picture we spent the last two weeks
with heavy doses of gluten. Grace was a mess. So was I, from chasing lows.
Grace's performance in school deteriorated beyond recognition. While I was
coming to terms with the fact that the results would take two weeks of more
gluten..... on top of all we had been through. The Doc started questioning
Grace's picture on gluten and when I mentioned that it was even worse in the
past two weeks, the Doc focused on there not having been enough gluten for
the previous four. She was a young Doc who had previously done a stint on
Gastroenterology. Grace tends to become constipated with pasty pale++++
stools. Leg and tummy pain and cramps and erratic blood sugars were our main
picture but the Doc focused on the absence of diarrhoea. Eventually she
agreed ( reluctantly in the absence of diarrhoea) to have Grace tested
(Transglutinase) in a further four weeks. I left the visit blown away and
then mentally added the two weeks for results and then the unpredictable
wait for a biopsy. i rang the clinic to appeal to the DSN as I understood
the picture was consistent with coeliac and Diabetes. I begged could we
please go straight to biopsy after this further four weeks. The nurse said
that Grace would have to have three positive transglutinase before even
being referred for a biopsy waiting list. All going well ,at this rate,
Grace would be a further three months on gluten. I put my suicidal head down
and plodded along. The first transglutinase came back in the normal range. I
was told categorically that my child did not have coeliac.
...or maybe she had been off gluten too long. At this stage she had been on
three months gluten and as a single parent I was afraid I would crumble. I
was up repeatedly all night with crazy unpredictable sugars.
It was agreed we would try again in two weeks. Ten days into this Grace
became unwell with a nasty virus that had hit many of the kids in school
already. Parents had found that temperatures were not responding to
paracetamol. So I went straight to a fruit fast. My daughter was a total
mess starting the virus after months of gluten. Her teacher commented daily
on the complete change in Grace languishing in class etc.
I had terror in my heart that the virus would somehow push us over the edge.
Three days later, on Water, fruit and fruit juice alone, Grace sparkled.
Even though she still had the virus it was like someone had turned on a
light again. I kept her gluten free until the virus had passed and intended
asking the teacher to help me monitor Grace on gluten in future. the team
had me questioning my intuition.
We got to the class door on Grace's return and the teacher exclaimed with
glee " we have our old Gracie back!"
That was all I needed. No gluten since. Unless by accident and then we know
by symptoms. Months later we got to a Gastro clinic and the Consultant said
that the transglutinase being in normal range implied that Grace was not
coeliac but that he had a number of children in Grace's position who the
parents felt Gluten free was indicated????????. even with his support that
Grace is better gluten free ( wheat rasp negative).
There is one Consultant at the Endo clinic who is furious Grace is gluten
free. One day, making her case at the inappropriateness of it she Insisted
"This child has Diabetes ...."
I was so tempted to respond "Really?" :O),
On reflection I would have gone with the transglutinase test before going
gluten free at all. Or on reflection my strongest preference would have been
making an informed decision with care on Vit B intake and then just getting
on with it. As a widow on a pension , my main concern was to get tax relief
on the gluten free foods.
Your system is different as you can choose your Doctor. with Medical
Insurance there is a different dynamic so maybe none of this might be
relevant. But just in case it is....
Also as I type I am suprised how hassled I feel a year later so it's been
cathartic ranting :O))
Best of luck to you all.

Mir Mum to Grace 7ys pumping 19mths

p.s. Two years ago I came here wondering at Grace complaining of leg pain
and presuming it was growth pains. Other parents said that had been a sign
for them. Over time the picture has become stronger and once gluten free
Grace's reaction is significantly increased the moment she was exposed to
gluten.
I think the most telling element for me was discussing with the
gastroenerologist . I explained that my greatest reservation to the
suggestion that it was just an allergy was how the symptoms were more
consistent with coeliac. The consultant paused and then offered to go
straight to biopsy if I would consider another six weeks!!! I offered that
once Grace started resisting gluten free foods she was all his!!!!


From: <email @ redacted>
To: <email @ redacted>
Sent: 07 June 2006 21:11
Subject: [IPk] Re: Coeliac question
>
> Hi
>
> Thank you Jackie and Elizabeth for your advice..much appreciated! My G.P
> rang me yesterday to say that Sophie isn't anaemic..he had been comparing
her
> levels with a normal adult range! However I still suspect she has coeliacs
> disease and will be trying a gluten free diet for a few weeks in the
summer
>  holidays. If Sophie shows an improvement then I will be asking for the
tests
> that
> you mentioned  (after starting again on Gluten!).
>
> Many Thanks
>
> Kirsty
> T1 33yrs (pumping 3.5yrs)
> .
.
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