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Dear listmates, With a "most likely gluten sensitive enteropathy" diagnosis
despite neg. blood and neg. biopsy tests, I've been GF now 3 months.  As I
wrote in another post, my Gastroenterologist (~approx. 25 years exp. and
graduate of Harvard Med. School) believes that I was manipulating my diet
and even became GF for three weeks before seeing him - from which he then
was prompted to put me on 3 gluten challenges;  So, his opinion is that I
must have "patchy" mucosal damage which caused my tests to become negative.
My dilemma is that although I've recovered from severe malabsorption
symptoms (i.e., 24 hour joint pain, weakness and fatigue) and a regain of
4-5 lbs. (first two weeks after GF), my weight has not improved for almost
2.5 months.  The only remaining pain or discomfort is caused by my stomach
just above my belly button and minor tenderness on my left side;  My
Gastroenterologist thinks that these symptoms are still being caused by my
Gastritis (stomach inflammation) and Gastroparesis (slow stomach emptying)
which he thinks may also be playing a part in continued fat malabsorption.
However, to regain my normal weight I need at least 12 or more lbs. (I had
lost a total of almost 20 percent of my normal weight before GF).

Because of my failure to gain weight, my doctor sent me an e-mail and wants
to now biopsy my jejunum which he couldn't get to before with an endoscope
(endoscopy).  He asked me a month ago to take a 4th gluten challenge for the
jejunal biopsies but now seems to want to do the test without a gluten
challenge.  He has now ordered an enteroscope and thinks he can still find
the damage in my jejunum which he didn't find from 10 biopsies of my
duodenum.  He even says that he will take a bunch more biopsies this time.
I don't want to put my body through continued stress if he doesn't have
another reason for jejunal biopsies other than getting absolute proof of
Celiac Disease;  I don't need any further convincing that I have Celiac
Disease.  Also, I can assure all of you and my doctor that I am absolutely
GF;  I follow CSA guidelines and even avoid processed foods and mill my own
flours to minimize risk.

1)Can anyone with a diagnosis of malabsorption syndrome tell me how long it
took them to regain their weight and how much percentage had they lost
before going GF?

2)Did anyone find out if they couldn't gain weight from another complication
of Celiac Disease and what the complication was?

I have yet to ask my Gastroenterologist the purpose of getting jejunal
biopsies other than to look for proof of Celiac Disease, but I will next
week.

Thanks for all your help, Laura




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