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Hello everyone!

A huge thank you to all of you who responded to my question. You are all
so supportive and genuinely interested in my situation-

Basically, it seems that having a positive biopsy but negative
antibodies is not that uncommon. (I hear often on this list of negative
biopsies, even after gluten challenges, so I was surprised to have
positive results while still on a srtict (I thought) GF diet.)

Most people explained that my antibodies probably disappeared after
going GF but the villi had still not healed- apparently this can take
quite a long time, and any trace of gluten will prevent the healing
process.

A few also wondered about my personal situation- so a quick rundown: I
am 5' 6", recently gained 6 lbs up to 103!!! (This is a big weight gain,
believe it or not- a good sign but it's taken 3000 calories a day) Was
diagnosed 2 years ago in June at age 24, was not sick before that but
noticed anemia and slow weight loss about 1 1/2 years before blood test
diagnosis.

Some people were also skeptical of the reliability of the blood tests:

"I have read some research that indicates a negative blood test results is
not as statistically accurate as the positive results are.  "

"Your experience may be, in keeping with recent data, indicating that mild
villous damage is not accompanied by positive EMA serology"

" I think that if you are IgA deficient, the blood work for gluten antibodies
is unreliable.  And IgA deficiency can checked by blood work."

"Your situation is not unusual 1.  90% of Celiacs(biopsy proven ) get "false"
negative results from blood tests.  It is not that a there was something
wrong with the patient or the doctor of the phebotomist; more likely it is do
to the lab."

One person addressed the issue of what else may be responsible for
damaged villi- a list taken from Scott adams web page including:
               Coeliac Disease
               Cow's Milk Protein Intolerance
               Soy Protein Intolerance
               Refractory Sprue
               Collagenous Sprue
               Immunodefiency Synodrome
               Protein Calorie Malnutrition
               Gasroenteritis
               Tropical Sprue
               Parasitic Disease
as well as some others.

In conclusion, most everyone said it was probably Sprue and not a
mysterious disease and that I should be extra careful and strict about
hidden gluten and try a very simple, whole foods diet for a while. A
follow up biopsy will probably be needed in a while.

So sorry for the lenth and THANK YOU to all of you- you are a wonderful
support system. I have responded back to about half of you and will try
to get to the rest before I go away and get totally off track!

Becca