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Dear Forum readers,
I'm the husband of a celiac wife and 3 celiac children (and 2 non celiac
kids) who have all been gluten free for almost a year.  The kids are doing
well on the diet, my wife, however, is suffering unbearably and has had no
relief from constant pain in her whole body, this terrible edema that no
doctor seems able to address along with a severe depression that has taken
away her desire to go on living.  She retreats into our bedroom most of the
time, is so weak, and in so much pain and so depressed that she can't do
anything at all.  She cries all the time. She has basically been waiting
around to die but her body just hangs on.  She prays for God to let her die,
but He obviously has other plans at this time.

Pain medicine has had no effect (at one point she was on 160 mg twice a day
of oxicontin and felt no difference)  she has been off of all pain meds now
except a 25mg patch for some time, anti-depression meds have not helped
(over the last 10 years she has tried numerous of them of various
combinations to no avail), nothing seems to work on her body.

They are trying to treat her thyroid which is barely over the limit (5.1)
but its doubtful that this is causing the edema that she has had for so long
but just gets worse. She's been on lasix (furosemide) for a long time now,
but its benefits seem to be wearing off and it never did get rid of the
edema. She can barely walk her knees are so swollen.

Her protein levels (albumin) have always been low no matter what she eats,
her levels remain very low (~3.0).  I know low protein can cause edema, the
edema increases her pain and her depression keeps her in a vicious cycle
that continues to spiral downward.

She has recovered from hyperparathyroidism (nearly killed her and probably
did brain damage in the process), auto-immune hepatitis (also nearly killed
her), and severe vitamin D deficiency already-- all due to fallout from
celiac.  None of the doctors  seem to be able to deal with her brain or her
peripheral neuropathy problems as her body just doesn't seem to be able to
make the "right stuff" to put her on the road to recovery.

She sees one doctor after another and they all try this or that and she
waits in misery weeks on end in between visits and has lost hope a long time
ago of ever being able to feel normal or have a day without severe pain
again.

Other than an I-V, does anyone know how to get her protein levels up or get
rid of her edema?  Anything that would help us would be greatly appreciated.

Thanks for reading this.
Dave

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