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[IPp] RE: [IPp CELIAC TESTING



Miriam and Liz,

Glad to help... when I come across more I will post.  My daughter's endo
suspected she may since there have been some elevated blood tests so I try
to keep up.  For Miriam, I can't say how long being on gluten would effect
levels.  My daughter's endo always defaults to 30 days.

Thank You,

Keirsten Welch RD, LD, CPT
Insulin Pump Specialist
Certified Pump Trainer
Phone: 1-800-631-3766

-----Original Message-----
From: Liz Harpum [mailto:email @ redacted]
Hi Kirsten

I found your post very interesting as our non- D son had a negative biopsy
for coeliac and so 'officially' he is not coeliac. However he had such
strong symptoms of coeliac (diarrhoea, abdominal pain with lots of wind and
bloating, tiredness, grumpy, weight loss, poor growth: he self-selected a
gluten free diet for 3 weeks, aged 2, with resulting disappearance of bowel
symptoms ) that the Dr said to try gluten free diet anyway and he has been
transformed. All bowel symptoms gone, weight increased from below 2nd to
>9th  percentile, growing,  full of energy and zest for life.....His IgA was
negative but  he  was IgA insufficient (common in coeliac), EMA and IgG were
"suggestive" whatever that means, he was also anaemic. I had heard from a Dr
relative that at least one Paed in Oxford will diagnose coeliac in spite of
a negative biopsy if blood tests are indicative and symptoms are relieved by
diet.
Thanks for the info
Liz mum to Eleanor, 10,  (dx 11/ 2002) pumping novorapid with minmed 512 and
6mm Quicksets since 20/10/04,
and to Hannah 7.5 (dairy and soya intolerant) and George 4 (dairy, soya and
gluten intolerant)
wife of Julian


> 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
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