Hello everyone,
I haven't posted in a long time. My daughter, also a Julia (3 yrs) has spent
almost a year in hospital. She has had a terrible time with infections (mostly
pneumonias as she aspirates liquids) and most recently a terrible run with
malabsorption which made her dependent on IV calcium 24 hrs per day. Julia has
hypoparathyroidism, Addison's and a severe sicca syndrome. At the end of last
month, Julia was started on a trial of immunosuppressive steroids (the dose is
1mg per kilo). She has undergone an amazing transformation. Not only is she now
off of the IV, but they are reducing her oral calcium dose. It is very exciting
to have her running free of lines again. She is thrilled. She is also
salivating more which makes it much easier for her to eat. Her doctors are
planning to switch her to Imuran, an immunosupressant that is safer for long
term use. I will let you know how it goes.
I attaching a case report below that describes an APECED patient with severe
malabsorption. None of his tests showed why he had such terrible symptoms. He
was started on pancreotic enzyme and that was quite a help to him. Thought I
would send this article out in case it is helpful to you or your doctors.
Wishing everyone a healthy 2008.
Jennifer, Toronto.


Malabsorption Due to Cholecystokinin Deficiency in a Patient with Autoimmune
Polyglandular Syndrome Type I
<http://search.nejm.org/search?p=R&srid=S9%2d2&lbc=nejm&w=autoimmune%20polygland\
ular&url=http%3a%2f%2fcontent%2enejm%2eorg%2fcgi%2fcontent%2fshort%2f344%2f4%2f2\
70&rk=5&uid=528881164&sid=2&ts=subs&rsc=j2LvvnYAnKzGK8oY&method=and&isort=score>
Hogenauer C, Meyer RL, Netto GJ, Bell D, Little KH, Ferries L, Santa Ana CA,
Porter JL, Fordtran JS
Autoimmune polyglandular syndrome type I is an autosomal recessive inherited
disease caused by mutations in the autoimmune regulator gene. 1 Its hallmarks
are the failure of multiple endocrine glands due ...

* Extract
<http://search.nejm.org/search?p=R&srid=S9%2d2&lbc=nejm&w=autoimmune%20polygland\
ular&url=http%3a%2f%2fcontent%2enejm%2eorg%2fcgi%2fcontent%2fshort%2f344%2f4%2f2\
70&rk=5&uid=528881164&sid=2&ts=subs&rsc=j2LvvnYAnKzGK8oY&method=and&isort=score&\
rurl=yes&nurl=http%3a%2f%2fcontent%2enejm%2eorg%2fcgi%2fcontent%2fextract%2f344%\
2f4%2f270>
* Full Text
<http://search.nejm.org/search?p=R&srid=S9%2d2&lbc=nejm&w=autoimmune%20polygland\
ular&url=http%3a%2f%2fcontent%2enejm%2eorg%2fcgi%2fcontent%2fshort%2f344%2f4%2f2\
70&rk=5&uid=528881164&sid=2&ts=subs&rsc=j2LvvnYAnKzGK8oY&method=and&isort=score&\
rurl=yes&nurl=http%3a%2f%2fcontent%2enejm%2eorg%2fcgi%2fcontent%2ffull%2f344%2f4\
%2f270>
* PDF
<http://search.nejm.org/search?p=R&srid=S9%2d2&lbc=nejm&w=autoimmune%20polygland\
ular&url=http%3a%2f%2fcontent%2enejm%2eorg%2fcgi%2fcontent%2fshort%2f344%2f4%2f2\
70&rk=5&uid=528881164&sid=2&ts=subs&rsc=j2LvvnYAnKzGK8oY&method=and&isort=score&\
rurl=yes&nurl=http%3a%2f%2fcontent%2enejm%2eorg%2fcgi%2freprint%2f344%2f4%2f270%\
2epdf>

N Engl J Med 344:270, January 25, 2001


-----Original Message-----
From: apeced@yahoogroups.com <apeced@yahoogroups.com>
To: apeced@yahoogroups.com <apeced@yahoogroups.com>
Sent: Wed Jan 16 13:25:50 2008
Subject: Re: [apeced] To those with malabsorption

Yeah, I'm thinking you're right - I've actually had yeast in my stomach before
and now that I think about it, it is very familiar - I've never had the lower GI
issues though - have you heard of people getting yeast overgrowth in the
intestines?

Now that I think of it - i've had two vaginal yeast infestions in the last month
as well. It's probably in my GI as well,

Thanks Dede

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