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Hi everyone.
I want to thank each and everyone who responded to my first posting. I
am posting the same story, but with much greater detail and with my
history. I hope I don't get in trouble by being redundant in this group. I
am new at this. I'm still looking for answers.
I am 47 years of age, Caucasian, and live outside of Washington DC, in
Alexandria, VA. First, in 1977 I acquired HepB from unprotected
heterosexual sex. It took me about 8 months to get over it. I am completely
free of it, can't give it, ECT. However, I was never the same after that...
colon wise. I have suffered on and off diarrhea ever since then. I also
have suffered with what I thought then was a sweat/heat rash type of thing.
The best way for me to describe the skin condition is poison ivy like. Like
little tiny blisters on the under belly of my wrists and my ankles. Really
itchy as hell sometimes. Comes and goes. Really not that often, though. The
diarrhea and rashes (and skin yeast) have gone on for years and years, on
and off.
About 8 years ago, I would say, I had my first case of reflux disease. I
did not know what it was then. It mostly affected my voice... constant
throat clearing, ect, but never acidic. Just some slight pain in the
sternum. I let it slide because I never had heartburn.
Then about 6 years ago the reflux came back. This time it was more
painful... mid sternum. I let it slide again. It went away.
Then maybe a year later, in 1995 I became very sick. My liver felt inflamed
on my right upper quadrant, a really nasty rash on my stomach and legs and
came down with diverticulitis, which was cured with antibiotics. Needless
to say, this scared the hell out of me. I thought my old friend Mr. Hep had
come to pay a visit. I remembered my hepatitis and the symptoms very well.
Off I went to the doctors demanding blood tests, cat scans, sonograms, you
name it. All hep /blood was negative for B and C . Also had a barium enema
which showed some diverticula... no biggy there, and had a barium swallow,
which was negative. Checked for HIV. Negative. All tests were negative. No
cirrhosis. However they said my liver was ever so slightly enlarged and so
was my prostrate. No one could find any reasons for this. It took from
October 1995 until March 1996 to resolve back to normal.....sort of. Keep in
mind the on again, off again steat was always there, but sometimes would
dissapear.
Then in May of 1999 I started to have real nasty pains right where my
splenic flexure is. The steat was getting worse along with the potentially
lethal explosive gas escaping from my body. So I started to really worry
again and off to the docs, again.
Then the fear of my pancreas set in. I had a FULL pancreatic scan- MRCP,
3 CT's, Trypsin, Amylase, Protease, fecal fat quantities, ECT... even an
Elastase Stool test, which is not even FDA, approved yet. I've learned to
find my way around ;-). All negative... thank God. Then I had 2 barium
swallows, colonoscopy, small bowel follow-through, folic acid, thyroid,
B12, Schillings test, ... shall I go on? All negative. All at this time my
esophagus went crazy. I also had an endoscopy. Result: Stage 2 erosive
esophagitis, up to this day. I am on a double dose of 30mg Prevacid a day
for almost 2 months now and not any better. Sick as a dawg and no where to
run.
On August 24th 2000, I received the results of my Elastase stool test
from Joli Diagnostics in NY for pancreatic insufficiency. It was
negative....however a person on the phone asked me "Have you ever been
checked for Celiac Disease?" "Nope" I said, and hit the books immediately.
That day I stopped gluten and that same day Satan left my body. The steat
stopped. So did the pain in my back at my splenic flexure (slowly) after a
year of it. I still felt rather crappy, but the bowel improvement was
almost instantaneous. I forgot to mention... over these past few years I
get what I've deemed the 'crawlies' on my face. like have a couple of cat
hairs on your face. You go to wipe it off and another pops up. Drives me
nuts! They also went away for a while on GF diet.
Now I put the hammer down. I went to a different GI..... a woman by choice
with a fresh point of view. She checked gastrin levels (Zollinger), all
other endocrine levels. All negative. Thank God again.
She also checked for Celiac disease.
Gliadin/Gluten IgA Ab = 5
Gliadin/Gluten IgG = 7
Tissue Transglutaminase IgA Ab = 143
Boink. Son-of-a-you know what.
Now, these are the dates involved which MIGHT have screwed up my IgG and
IgA.
August 24th - Gluten Free Diet Started
September 26th - Back on Gluten
October 6th - Blood work done.
So maybe that is why my IgG and IgA were negative. I'm sooooo confused.
Since I went back on gluten, it really wasn't (I say this lightly) toooo
bad. But now, since I realized my tTG levels were so high, I am probably
going to have a small bowel biopsy on October 30t and I've hit the gluten
hard. Here came the steat again and 'sick' as a dog and yesterday (for
example) , weak, malaise, and I have a mother of a pounder headache. I've
been getting these headaches on and off, too, for 8 years or so. And this
last weekend I pigged out on rolls, pizza, ect and had horrible steat. I
could not work today I feel so 'green'. Nice story, huh?
To let you know what kind of a person I am, I am also going to go to the
Medical University Of MD in Baltimore and have my zonulin levels
checked. Here is the link for that...
http://www.eurekalert.org/releases/ummc-rfi042700.html
So what do you think now? I'm so lost and so confused. This
year has been a complete loss, mentally and physically.
Oh... I did just start to put weight back on during GF diet. From 180 in
May, down to 158 in July and now about 164. Of course, I don't eat like I
used to. I can remember eating pepperoni rolls with goat cheese, a glass of
red wine and CANADIAN STONE WHEAT THINS and eat the whole damn box and
blame it on a glass of wine. Another example.... eat a big spaghetti dinner
and wake up 3am in the morning with gas beyond belief ( don't light a
match!) and have really heavy drenching cold sweats, soaking wet, to the
point of having to change my sheets and take a shower. I could go on and
on.
I fear other diseases but I don't know if high tTG levels are indicative
of other diseases.
This disease, for me, gives me colonic pain on and off, steat, gas, small
occasional blistering on wrists and ankles and erosive esophagitis. Also I
have rapid heart rate early in the morning just as my stool begins to move.
This wakes me every morning and really screws up my sleep. After the bowel
movement goes, I am fine.
What worries me is maybe this is eosinophilic gastroenteritis or some
other strange thing.
So I guess my real interest is your opinion, again, and if anyone at all
may know what else high tTg levels may indicate besides CD.
My biopsy is most likely Monday, October 30th. I'm not scared of the
test; I'm scared of the uncertainty.
Sounds so ridiculous, but I want to be celiac; for without that I will
remain sick and not know what to do next. I just want my life back, even if
I have to eat cardbaord. I have paid for all of these test this year, in
cash. A hunk of my savings. I am so desperate to get my health and my soul
back.
Thanks for reading this far and letting me be long winded.
Ideas welcomed.
Feel free to email direct,
Greg Schoenborn
[log in to unmask]
www.schoenborn.net
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