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Dear listmates,  Sorry, I didn't summarize earlier but I took a down turn
this week trying to prepare for the Given capsule endoscopy;  I was chosen
to be one of 10 people in a study of malabsorption syndrome.  The capsule
was like a large vitamin which I took with water;  it looked like space age
technology because it had a tiny lens with four blinking lights.  I had to
wear eight sensors on my abdomen, a battery pack, and a recorder with a
blinking light.  The capsule took pictures at the rate of 2 per second over
8 hours of the study which my doctor, in elation, said that he now has over
56,000 pictures to look at like a video.  The capsule passed my entire GI
tract in 11 hours since I was able to see it still blinking.  By the way,
this time the doctor didn't ask me to eat gluten since the 12 endoscopic
biopsies taken in Dec. already came out negative for "blunted villi" and H.
pylori bacteria.  I will await what he says about all the abnormalities he's
seen including now, the capsule endoscopy.

  The capsule preparation was grueling because the doctor requested that I
fast for 45 hours in order to maximize the study that required at a minimum
to fast of only 8 hours.  He said that if you want to maximize the yield,
you have to take the magnesium citrate (laxative to clear bowels).  He then
could view not just my stomach and small intestines (duodenum and jejunum)
but my colon as well.   I figured that if I can avoid a colonoscopy, I would
then "kill two birds with one stone."   He compared the preparation I had to
make to his description to taking the three gluten challenges as "maximizing
the yield"  or maximizing the results of the tests;  When preparing for the
tests, i.e., fecal fat and endoscopy over Nov. and Dec., he asked me to make
the bad stools because he said that he needed "complete damage" in order to
diagnose celiac.  As you know, he saw many abnormalities but the
pathologists didn't find the "blunted villi";  However, the doctor has been
able to rule out many other diseases already with the tests thus far.  My
husband who is an immunologist / research doctor argued, Why does she have
to eat gluten even if it is celiac disease because if you find it to be
something else, she doesn't need to eat gluten for that purpose.  If it is
celiac and she does better off of gluten, then it is celiac if you don't
find anything else to be responsible for the cause of her symptoms.  Well, I
believe now that my husband was right and that my quest to get celiacs
diagnosed has been at the expense of my own health.

I am taking even longer now to feel better and I've been having heart
trouble since the last 3rd gluten challenge;  my stamina can be fleeing.
Yesterday, I took my echocardiogram to check my mitral valve and left
ventricle;  The examiner saw something wrong and called the cardiologist who
asked her to continue the exam with some non-routine procedures.  Since I'm
low weight, the hard ball wand used on my chest to view my heart was painful
on my ribs and I was shaking from the pain.  Now, I have to think something
else could be wrong with me.  And in fact, I think I "might" even have a
pancreatic problem as I've been reading about my newly chronic symptom of
upper right side abdominal pain that can go around to my back.  Whenever I
eat fat or meat, I notice the pain flare up.  I did some reading of the
Merck Manual (www.Merck.com) and site for the NIDDK (National Digestive
Diseases Information Clearinghouse), www.niddk.nih.gov., regarding
pancreatitis and malabsorption. In a CSA Lifeline article dated Summer 2000,
I read about the celiac story of Monica Shepherd who had an attack of
pancreatitis a year after being diagnosed and her symptoms mirror mine.  I
coincidentally read that treatment can involve prescribed digestive enzymes
and eating smaller meals which are high in carbohydrates and low in fat;
Since the diet is further restricted, vitamin supplements may be added.  I
also read that this treatment can allow a patient to gain weight.  After a
symptomatic bout a day before fasting for the capsule endoscopy and losing 3
pounds but couldn't trace to any gluten since I mostly eat chicken rice
porridge and all from scratch, I did more research and found that "weight
loss occurs because the body does not secrete enough pancreatic enzymes to
break down food, so nutrients are not absorbed.   Poor digestion leads to
excretion of fat, protein, and sugar..." (NIDDK).  Well, doesn't this also
sound like malabsorption.  Yes,  and I don't know if my symptoms are just
from the malabsorption caused by the celiac disease and/or pancreatitis or
pancreatic lipase deficiency caused by the malabsorption (www.merck.com
under General Malabsorption).  I'D BE INTERESTED IN KNOWING ANYONE WITH THE
COMPLICATION OF PANCREATITIS OR PANCREATIC INSUFFICIENCY;  My research
doctor  husband and I have a current plan to have me follow the diet above
for a while and see if my pain and weight improve;  I will also ask him to
look for medical research literature on pancreatic problems if any one is
interested also;  In fact, it was my husband's stepped up research of
medical literature for every symptom I've experienced since April 2001 that
led us to celiac disease after going thru readings of  IBS,  lactose
intolerances, food sensitivities to milk and soy, Chrohn's, etc.  Afterall,
the doctor's weren't taking my symptoms serious enough as the weight loss
continued and the doctor's would say what's a couple of pounds here or
there, until I realized they were adding up and had to find a doctor myself
with my husband's help.

Now finally on to the summary:

First of all, someone was so kind to point me to pictures of scalloping
of the folds as implicated in celiac disease -
http://www.panix.com/~donwiss/gflinks/#pics;  I also read "sometimes the
endoscopist may note either a loss or scalloping of the normal duodenal
folds..."  in biopsies of celiac patients (Gastroenterology 2001, vol.
120, pg. 1526-1540).

I was given the following contacts for 2nd opinions on  negative encoscopic
biopies:

Check with Dr. Fasano at www.celiaccenter.org University of Maryland,
Ctr. for Celiac Research (Ph. 410-706-3734 or FAX ext. 1669) Dr. Robert
Zipser, Gastroenterologist, San Dimas, CA (Ph. 909-599-8421)

Perhaps contact Dr Peter Green at Columbian Prespetarian Mediacl Ctr in NYC.
He specializes celiac desease.

I will give you the phone number for the University of Chicago Celiac
Disease Program. They might have someone who could look at your biopsy
slides. I don't know but it might be a shot. Phone # 773-702-7593.

I sent my daughter's biopsies to mayo clinic Dr Murray. I asked my doctor to
send it and he did. They confirmed it was negative.

I was told that Joseph Murray at the Mayo clinic will do this. His number is
on celiac.com, look under Doctors Recommended. He has to be called first and
payment arrangements of course should be made. I have not done this myself,
but I heard it is an option. good luck.

Try Dr Peter green in NYC/COLUMBIA MEDICAL CENTER. He is really a celiac
specialist & a kind & caring person.

Go to www.finerhealth.com The lab site is connected to that site.

Good health, Laura