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[IPp] Re: Possible Celiac, WAS What went wrong?



Morgan,

Probably not celiac, just a "gut bug".  As for celiac, in the reading 
I've done, the celiac tests are good but not great (or perfect).  
Several items suggested that two (2) successive positive tests are 
really necessary before you think about celiac (I think that is stated 
in the first reference I've listed below).  As Keirsten suggested, wait 
for the next appt. and get another test done.  Here is a link to the 
symptoms of celiac (http://www.celiac.org/cd-symptoms.html).  Note it's 
at celiac.org - it's a growing organization.  Also, below there are a 
couple of references to Celiac and one with its abstract that I thought 
might be of interest.  You should be able to get these papers at the 
local medical library.

As for Allie, hang in there.  Sounds like she's sick (as in really 
sick).   Don't worry too much about the ketones, she's not eating much 
so she's burning fat and muscle, which in a diabetic causes ketones (of 
course, has anyone checked a non-D kid at the height of their 
sickness?).  If she will, eat carbs and when BGs are high(er) give 
insulin to help clear ketones.  Push fluids (all of which is news to 
you I'm sure).

One of the explanations I've heard for the "not needing insulin" 
routine - and it only seems to happen when they're sick - is that the 
immune system is killing off more islet cells (insulin producing cells) 
as a side-effect of the sickness.  Thus, you have insulin "sloshing" 
into the system without any controls.  You get lows without notice and 
can eat food without bolusing.

The ear-ache suggests an infection, take her to her pediatrician (not 
endo) for a check.

Finally, call in a Grandparent (if possible) to help.  Everyone needs 
sleep - even you.

Is there anything else I can tell you how to do?  ;-)

David Jensen
Father to Sigrid, Dx 9/02 @ 11 months, Pumping Cozmo 4/03.


Accomando S, Cataldo F.
The global village of celiac disease.
Dig Liver Dis. 2004 Jul;36(7):492-8. Review.
PMID: 15285531

Rossi T.
Celiac disease.
Adolesc Med Clin. 2004 Feb;15(1):91-103, ix. Review.
PMID: 15272258

Health Technol Assess. 2004 Jun;8(22):iii-xi, 1-18
Autoantibody testing in children with newly diagnosed type 1 diabetes 
mellitus.
Dretzke J, Cummins C, Sandercock J, Fry-Smith A, Barrett T, Burls A.
Department of Public Health and Epidemiology, University of Birmingham, 
UK.

OBJECTIVES: To determine the role of autoantibody tests for autoimmune 
diseases in children with newly diagnosed type 1 diabetes mellitus. 
DATA SOURCES: MEDLINE, EMBASE and the Cochrane Library. Citation lists 
of included studies were scanned and relevant professional and patient 
websites reviewed. Laboratories and manufacturers were contacted to 
identify ongoing or unpublished research. REVIEW METHODS: Following 
scoping searches on thyroid and coeliac autoantibodies, a systematic 
review of autoantibody tests for diagnosis of coeliac disease was 
carried out. Studies were included where cohorts of untreated patients 
with unknown disease status were included, all patients had undergone 
the reference test (biopsy) and antibody tests, and sensitivity and 
specificity were reported or calculable. Selected studies were then 
evaluated against a quality checklist. Summary statistics of diagnostic 
accuracy, i.e. sensitivity, specificity, positive and negative 
likelihood ratios and diagnostic odds ratios, were calculated for all 
studies. A decision analytic model was developed to evaluate the cost 
utility of screening for coeliac disease at diagnosis of diabetes. 
RESULTS: All antibody tests for diagnosis of coeliac disease showed 
reasonably good diagnostic test accuracy. Studies reported variable 
measures of test accuracy, which may be due to aspects of study 
quality, differences in the tests and their execution in the 
laboratories, different populations and reference standards. The 
decision analytic model indicated screening for coeliac disease at 
diagnosis of diabetes was cost-effective. Sensitivity analyses 
exploring variations in the cost and disutility of gluten-free diet, 
the utilities attached to treated and untreated coeliac disease and the 
decrease in life expectancy associated with treated and untreated 
coeliac disease did substantially affect the cost-effectiveness of the 
screening strategies considered. CONCLUSIONS: In terms of test accuracy 
in testing for coeliac disease, immunoglobulin A (IgA) anti-endomysium 
is the most accurate test. If an enzyme-linked immunoassay test was 
required, which may be more suitable for screening purposes as it can 
be semi-automated, testing for IgA tissue transglutaminase is likely to 
be most accurate. The decision analytic model shows that the most 
accurate tests combined with confirmatory biopsy are the most 
cost-effective, whilst combinations of tests add little or no further 
value. There is limited information regarding test accuracy in 
screening populations with diabetes, and there is some uncertainty over 
whether the test characteristics would remain the same. Further 
research is required regarding the role of screening in silent coeliac 
disease and regarding long-term outcomes and complications of untreated 
coeliac disease.



On Monday, December 27, 2004, at 02:14  PM, pop-digest wrote:

> Date: Mon, 27 Dec 2004 12:42:27 -0600
> From: "Erickson, Morgan [CC]" <email @ redacted>
> Subject: RE: [IPp] What went wrong?
>
> 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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