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Hello,

Please will you give me your personal experiences and knowledge of
questions below?  Background on this irish-italian 40 something woman:

Hospitalized for jejunitis in May & in June 2001. GI said "what's celiac
disease?  You have crohn's."  New GI at Hopkins (2 hr trip one way) said no
villial blunting in first endo. Suspects crohn's (he's a crohn's expert).
Did my own research into celiac. Sounds like me.  Read on.

Since 2001: iron deficiency anemia; menorrhagia (may explain aenemia),
microcytic anemia; mild steatorreah per test; sporratic low levels of vits
A, D, K, and B12; slightly elevated anti-OMPC IgA (a Crohn's test?); anti-
coagulating lupus something or other "resolved."
 Virus hound. Brain
fogged. Achy joints.  Gained 25 lbs (and was already 40 lbs overweight).
intermittent left side pain and often just under the center of my breast
bone.  Since Thanksgiving this year, morning nausea (rabbit didn't die).
Once braniac; Webster's defines "air head" by showing my pic. Once office
clown; now Maryland state grump.

I've had every test: Barium swallows, xrays, numerous cat scans, endos,
blood work, and colonoscopies. All supposedly normal (e.g., bone density
scan: bones of a 16 year old. Got milk?) For three years, the GI told me
endoscopies were "normal." But i requested my file (all i got were his
notes) and learned endos have shown: nodules in the mucosa of the duodenal
bumb, gastric heterotopia in the bulb, mild intraephithelial lymphocytosis,
intramucosal Brunner gland, chronic peptic duodenitis, increased chronic
inflammation
, possible chemical gastritis, chronic inflammation of the
gastric body.  Celiac book, internet (and you) indicate celiac or pre-
celiac possible.  my irish granddad died painfully of duodenal cancer (his
died of intestinal cancer), and i will do ANYTHING to avoid that. i stopped
drinking and smoking. i can give up W-RBO "one day at a time."

Celiac tested twice (fought for it).  Both "negative" per Hopkins GI:
levels too low (second numbers higher than first, same lab).  Maybe my
gluten intake was insufficient?  Hopkins GI: no biopsies show CD. Genetic
test results not reported to me yet.

Capsule endoscopy on 11 Feb: camera never leaves stomach, severe nausea for
a week. Not a SINGLE photo of sm. intestine from capsule. DARN.  (Hopkins
GI: gastropareisis or intestinal blockage causing gastroparesis. Refused
test with NG tube and barium swallow.)  Then 10 horrid days of stomache
 flu
(6 other work mates same thing).  3 March admitted to local hospital (not
Hopkins) for jejunitis (again!) CT scan report: "fairly long loop of
abnormal small bowel with diffuse thickening and edema most likely IBD.
Loop also mildly dialated. Moderate ascites."  4 Mar, new local GI walks in
and says "i suspect CD."  Hired him on the spot. GI doc says go gluten-
free. YEAH! Helped by local CD support group leader, gluten-free 8 March.
Still ill, on short term disability.  Good thing, i can research.

That's my history. Here are my questions.

1. Has anyone else suffered from jejunitis as a result of CD? Can you have
jejunitis from CD when the duodenum doesn't have villial blunting?
2. Any of these symptoms had by list members?  Did they clear up for YOU?
How long did it take?  Did you do anything besides go gluten-free?  (Meds,
supplements, alternative non-medical fo
rms of treatment?)
3. Need a CD-smart lab near Maryland that i can recommend to the GI to
process and read the biopsy slides for scheduled endoscopy.  The GI is
going to try to get to the jejunum, which might be tricky because the
problem is in the exact middle of the jejunum.
4. If it's been 2 weeks, will any signs of CD still exist in gut at
endoscopy?
5. What did you find was easy to eat while your gut healed?
6. All words of wisdom, experience appreciated.

My pledge to my local celiac contact: if i have CD, i'll volunteer to share
my experience, strength and hope (when I get some) with other celiacs. will
post summaries of responses i get for lurkers like me. Forgive the length
of this post.

tracey p in southern maryland, USA
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