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Subject:
From:
Waynel Green <[log in to unmask]>
Date:
Wed, 18 Nov 1998 14:04:58 -0600
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<<Disclaimer: Verify this information before applying it to your situation.>>

From Waynel (female)

Those quoted have compelling stories best told in their own words.  My
thanks to them for their generous responses and website addresses.

Q/ Are there list members who have experience with kidney diseases such as
glomerulonephritis and IgA nephropathy or who have undergone kidney biopsy?

Response #1:
I have had DH for 14 years, my sister is also positive, as is a niece - the
daughter of another sibling. One of my identical twin daughters has a form
of glomerulonephritis called MPGN type II (membranoproliferative
glomerulonephritis). She developed this disease when she was 6 yrs. old, and
went into renal failure when she was 7 yrs.old. She has been on dialysis for
5 1/2 years. If you want more information about this disease you can visit
our website... We have formed KIDNEEDS,  a research foundation whose sole
purpose is to award grant money to  study this rare disease. Our other twin
daughter is not affected.

Our website is http://www.medicine.uiowa.edu/kidneeds.

I have run into another person with MPGN, unknown type, who has CD. SHe has
had 3 transplants. Again, this disease is rare- but there is no known cause
or cure. A researcher is currently doing some genetic studies on my twins
for clues - neither has turned up positive for CD.   ...I would be glad to
answer your questions.

Response #2:
I was diagnosed with glomerulonephritis at the age of 22. I went on dialysis
at 30 and am now 45. My celiac disease was diagnosed 4 years ago. Please
direct any questions to me at [log in to unmask] I will be more than happy to
answer them.  Jude Friedman

Response #3:
I was diagnosed with glomerulonephritis 10 years before I was diagnosed with
CD.  At the time I was also being treated for high blood pressure.  To this
day the Glomer. has not been a problem. Kidney tests have always been good
although I still have infrequent periods with small amounts of blood in the
urine.  Clears up without any action and I'm fine for another few years.
...since I was diagnosed with CD about 4 years ago there have been no blood
periods.

Response #4:
Any newly diagnosed celiac should have their kidneys monitored. This
is routinely done by watching the BUN/Creatine ratio. A ratio over 25 is
indicative of a problem. Mine was over 20 for about six months...It has
returned to normal. Kidney damage is contingent on how long was "inflammed"
before they were diagnosed. When the body is inflammed like it is with
celiac disease, there is a large supply of IgG and IgA flowing through the
body, possibly doing damage to other organs. Most doctors don't consider
this, although any med student should know it. After an individual
begins the gluten free diet the inflammation begins to subside. I was
concerned for about six to eight months after being diagnosed ...However,
after more than a year my body is returning to "normal."   If you feel your
white blood count is too high or BUN/creatine level is too high contact your
doctor, remind them that celiac disease
causes inflammation of the intestines and inflammation causes other
problems...be informed and prudent."
For information on IgA nephropathy see http://www.kidneydoctor.com/iga.htm
Have you seen http://www.aafp.org/afp/980301ap/pruessn.html ?
I am not a doctor and am not making any recommendations. Available
information indicates that one should be concerned if there is: blood in
urine (sometimes microscopic) or mild proteinuria or  edema, hypertension,
and renal insufficiency.  Edema (swelling) is associated with any
inflammation.
For good information on inflammation in general see
http://www.savba.sk/logos/books/scientific/node1.html  (End of Response #4)

Quote from Nat'l Institute of Diabetes and Digestive and Kidney Diseases
website:  http://www.niddk.nih.gov/health/kidney/kidney.htm
"Glomerulonephritis is a kidney disease. The kidneys' filters become
inflamed and scarred and slowly lose their ability to remove wastes and
excess water from the blood to make urine. Kidney disease of diabetes, IgA
nephropathy,  and lupus nephritis are some types of glomerulonephritis.
Symptoms and signs of this disease are fatigue; high blood pressure;
swelling, especially noticeable in the face, hands, feet, and ankles; and
blood and protein in the urine. Unfortunately, the kidneys can be severely
damaged before symptoms and signs appear."

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