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Re: [IPp] RE: [IPp CELIAC TESTING



Keirsten
Can I ask you what period of time back on gluten would be sufficient to give
an accurate reading? Grace had pale stools, vague cramps and no diarrhoea.
What alerted me was a series of chasing lows after food. This coincided with
a tummy bug so the first thought was viral but Grace has regularly
complained of pains in her legs when gluten in diet (coincidence?) so in the
interests of getting our paws on the pump I opted for GF and put the
question mark on hold. I am sure that if coeliac is not a factor gluten
intolerance is.. though in terms of the large amounts of pasta wholegrain
breads and Weetabix that became her staples since diagnosis that would make
sense to me that her body benefited from a break. Over Christmas, Grace
chose some gluten foods and I waited to see what happened but there were no
clear signs. Aches in legs may have been to do with dancing legs off, so
too, decreased sugars!
Thankyou for the info. I'll learn off the terms before our next appointment.
Though chances are I'll get it wrong like a pal's Granny who rang to tell me
that my friend needed the doctor to do a sexual on her ( Section!?!).
Many thanks for the excellent information
Mir
Mum to Grace 5yrs dx 10.03p pumping 13weeks

From: "Welch, Keirsten" <email @ redacted>
To: <email @ redacted>
Sent: 05 January 2005 15:10
Subject: [IPp] RE: [IPp CELIAC TESTING


> This is what I found recently in a lecture review by pediatric group for
> American association of Diabetes Educators - (only highlights of the
> lecture)
> 1. Celiac is extremely underdiagnosed
> 2. 1.5 million have it with only 15,000 officially diagnosed
> 3.Most accurate blood testing is the anti-endomysial antibody (EMA) and
the
> tissue transglutaminase (TtG) with an 85-95 % accuracy.  When going for
the
> blood work tey should not go on a gluten free diet.  The confirmation with
a
> intestinal biopsy is still considered standard with 3-4 specimens and be
> evaluated by an experienced pathologist with looking at celiac biopsies.
> 4. Top 3 symptoms: chronic diarrhea, abdominal pain and/or distention, and
> constipation
> 5.  New recommendations to treat if a positive EMA or TtG and a negative
> biopsy.
>
> The lecturer was Dee Sandquist, MS, RD, CDE   www.swmedicalcenter.com
>
> My own research has found that girls are dx more often than boys.  Also,
> females diagnosed with T1 before the age of 4 are at a much higher risk.
> Blood testing should occur at a minimum yearly (typically every 6 mo.)
until
> the age of 10.    My daughter's endo uses 4 blood test comparisons
> (IgA, IgG, EMA and TtG) -  Hope this helps...
>
> Recommended websites:    www.celiac.com and  www.celiac.org
>
> Thank You,
>
> Keirsten Welch RD, LD, CPT
> Insulin Pump Specialist
> Certified Pump Trainer
> -----Original Message-----
> From: Miriam Connor [mailto:email @ redacted]
>
> I'd be really interested in any info on testing etc.
> Grace has had gluten occasionally since.
> For the biopsy, I understand she needs to be taking gluten.
> I am wondering if it was true celiac or if there was just a gluten
> intolerance that may be manageable in another way. Whenever Grace
complains
> after gluten she gets relief from probiotics.
> It's in the back of my mind all the time so it was great to see your
mails.
> Grace gets leg pains too.
> Thanks lads
> Mir
> Mum to grace 5yrs dx 10.03 and pumping Oct 6th
> ----- Original Message -----
> From: "Welch, Keirsten" <email @ redacted>
>
> > I don't know from experience if celiac can cause such variations but I
> have
> > to guess from the nature of the disease it can. I do know that my
daughter
> > tested positive in 2 of the 3 blood tests used.  One of the 3 is the
> better
> > predictor - that is the one my daughter was negative for.  A definite
> > diagnosis comes with a biopsy.  Before that is done, test in 4-6 months
or
> > get a second opinion.  We can talk off line if necessary.  I will get
the
> > specifics from my daughter's endo on what tests to worry about and how
to
> > proceed if you would like.  I work for him as a consultant dietitian so
I
> am
> > fortunate to have him at my disposal when I need him.   One other
approach
> > is to try a gluten-free diet for 30 days before a blood test and see if
> > there is a change in value.
> >
> > Unfortunately, with illness, you are treating symptoms and not the cause
> for
> > awhile.  It is frustrating.
> >
> > Thank You,
> >
> > Keirsten Welch RD, LD, CPT
> >
> > -----Original Message-----
> > From: Erickson, Morgan [CC] [mailto:email @ redacted]
> > Sent: Monday, December 27, 2004 1:42 PM
> >
> > Every time Allie has an Endo appointment, we get a copy of the letter
> > that gets sent to her pediatrician.
> >
> > We got our latest copy on Thursday.  This one mentioned she tested
> > positive for some antibody that may mean she has celiac.  This was the
> > first we'd heard of it.
> >
> > Ever since Tuesday, nothing Allie has eaten has affected her blood
> > sugar.  With her pump on at her normal basal, she'd go dangerously low.
> > The only way to get her higher was to turn the pump off.  With it off,
> > she'd go up, but get ketones.
> >
> > Calls to the on-call Endo (even one at 2 am) provided no real ideas.
> > Eventually we took her down to a .05 basal.  This gave her high BS and
> > ketones most of the time.
> >
> > Last night she complained of an earache.  She's had little to no
> > appetite for a week.
> >
> > Called the Dr today (spoke with a dietician) and they wanted her to be
> > at .05 from midnight to 10 am and at .1 from 10 am to midnight.  Also
> > changed her bolus rate to 1-40.  I told them that food was not affecting
> > her BS AT ALL but it was brushed off...
> >
> > I feel like we are fighting the symptoms and not the cause.
> >
> > Today we had our first low since Thursday (55) and food seemed to help.
> >
> > Would celiac, which I know nothing about, produce symptoms like this?
> > Any suggestions on what to do?
> >
> > Morgan
> >>
> >
> >
> >
> >
> >
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