For the past 12 months or more I have had
increasing bowel problems that are wearing
me down so much. I am in almost constant
severe pain, lost 3 stone in weight, had
just about every test imaginable that all
show ok except I was shown to have
gallstones. I eventually had my
gallbladder removed 6 weeks ago. The
surgeon was convinced all the other bowel
problems I'd had was due to this, I wasn't
convinced. My gallbladder was full of pus
& I had a large stone blocking my bile
duct when they opened me up. Some blood
& pus also leaked onto my liver
causing severe pain afterwards. However I
have recovered well from the surgery &
thought that wuld be the end of my
symptoms but it appears that I still have
all the bowel symptoms apart from I no
longer have the gallbladder attacks. I
have tried every diet even a total
exclusion diet. They seem to work for a
while but at the moment if I eat anything
I am in severe pain, so am just eating
enough to get me by. I will list my
symptoms as they are so varied:
Severe abdominal pain, sometimes above
pubic bone, sometimes at waist sides,
sometimes centre of ribs but usally are
cramp like pains.
Diarrhea but not always, I can have the
pain without it.
Sickness or nausea.
Very pale yellow stools.
Sometimes orangy very loose oily diarhea.
Pain starts half an hour after eating,
could almost set clock by it.
I am at the end of my tether with it, dr's
have no answers, I have had to be rushed
to hospital in pain several times. I am
now convincing myself it is somethng
sinister. I am on the verge of losing my
job due to the time I have had off &
also because I have become violently ill
while working.
I have read the post about what celiacs is
& read other info on the net. When I
tell peole my symptoms they always say
have you got a problem with gluten or do I
have celiacs.
When I had biopsies from my bowels they
came back ok, I have had loads of blood
tests & I know 1 has been for celiacs
but still came back ok.
When I have had a bout of thr pains I have
tried following a gluten free diet &
had no pain but also I have had no pain
when eating gluten when not having a bout
of problems.
Does this sound anything like celiacs, is
it possible to have pain eating gluten one
day but not the next?
Is it possible for the tests I've had to
come back k but still have a problem?
Advice desperately needed!
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sillyakchick
Moderator
Joined: 12 Apr 2007 Posts: 2688
Thanks: 4
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Posted: 04-22-07 18:47pm
Celiac disease can be difficult to
diagnose for some people. If you felt
better on the Gluten Free diet, many
consider that proof enough. I had a hard
time understanding from your post-Do you,
in fact, feel better when you do not eat
gluten?
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dynamicdebz
New User, Becoming EHEALTHy
Joined: 21 Apr 2007 Posts: 41 Location: Sheffield, UK
Posted: 04-23-07 05:43am
When I have had the severe pains etc I
have really had more of a total exclusion
diet rather than gluten free diet. I have
no appetite when I am in the pain as I
also feel nauseas. So I basically eat to
stay alive. I eat things like plain cod
& boiled rice. Or chicken & jacket
potato with nothing on them.
However I can eat gluten & most other
things when I am ok & not have a
problem.
It appears to me like it may be a build up
of gluten or even dairy that causes the
problem, so when I have too much it
starts, then after I am ok till there is a
build up again.
Is this possible?
I am in UK so it is better for me to know
for definate as I would get gluten free
products on a free prescription if I am
diagnosed.
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sillyakchick
Moderator
Joined: 12 Apr 2007 Posts: 2688
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Posted: 04-23-07 13:34pm
There is a website which does the genetic
testing for celiac called enterolab. They
send you a kit and then you follow the
directions and send it back. Your
physician can also order the genetic
testing. I am sooo envious that you can
get Gluten free stuff at no cost!! That
stuff is expensive!
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dynamicdebz
New User, Becoming EHEALTHy
Joined: 21 Apr 2007 Posts: 41 Location: Sheffield, UK
Posted: 04-23-07 16:23pm
The NHS does have it advantages but I
would need a diagnosis first to get the
prescriptions.
The disadvantages are that when I first
realised I was having problems I couldn't
just decide to pick a dr to visit when I
felt like it. I had to visit my GP who
then had to refer me to a consultant at my
local hospital, the waiting list being
about 3 months for the first appointment.
Thats just one example of the
disadvantages.
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sillyakchick
Moderator
Joined: 12 Apr 2007 Posts: 2688
Thanks: 4
Thanked:0
Posted: 04-23-07 17:23pm
Point taken! Anyway, please let me know
how you are doing.
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dynamicdebz
New User, Becoming EHEALTHy
Joined: 21 Apr 2007 Posts: 41 Location: Sheffield, UK
Posted: 04-24-07 15:25pm
Been to hospital appt today, I told the
consultant all my symptoms going over a
lot of old ground.
Because of the pale motions he is still
convinced it is a bilary problem.
He has ordered an MRI scan to see if some
debri has been left behind in my duct
& has arranged for my stools to be
tested for pancreas insifficiency.
So it is just another waiting game, I have
to see him again once I've had MRI scan,
that could be in 6 - 8 weeks.
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sillyakchick
Moderator
Joined: 12 Apr 2007 Posts: 2688
Thanks: 4
Thanked:0
Posted: 04-24-07 15:54pm
That is very interesting. I, too, have
had my gall bladder out, and afterward
continued to have the same gall
bladder-type pain. They diagnosed me with
"Spasm of the Sphincter of Oddi, Type
III". it is terribly painful, and I have
been to the ER several times for it. Last
October they sent me to a fantastic pain
management Dr. and I got some medication
that works, ans they also referred me for
acupuncture. This has been a lifesaver.
This condiditon results when the bile or
pancreatic duct spasms and does not
properly release the bile into the stomach
for digestion. In my case, the bile
builds up over time and then releases too
much causing horrible pain and nausea. It
seems to worsen with stress or eating
certain foods, but I am not sure what
foods cause this to happen.
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