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I recently posted a question about a right-side pain I have been
experiencing. The pain is at my waist on the right side and is
intermittent and usually sharp. I can feel where it is when I press to the
right of my belly button at my waist. I had this pain about six months
before celiac diagnosis. When I went gluten-free last fall, the pain
diminished and then went away. It seems to return when I get careless in
my diet. I know I was especially careless this last month, and the pain
returned with a vengeance and got almost intolerable. That is when I
posted the question to you people. I received many replies, and here is
the summation of those. Incidentally, I have been extra-careful the last
week or so, and the pain is nearly gone again, leading me to conclude that
it has something to do with gluten ingestion.

One person writes: “This sounds like the kind of pain I had, which turned
out to be something called sphincter of oddi dysfunction (SOD).  Another
name for it is papillary stenosis.  It creates the kind of pain you might
have from a gallbladder attack, but tests on the gallbladder, such as
ultrasound and hida scan will be normal (no stones).  I suspect this is a
frequent and seldom recognized condition in celiacs.  The bile duct and
pancreatic duct empty into the small intestine at the sphincter of oddi.
It's a muscular valve that opens and closes after you eat to release
digestive fluids from the liver and pancreas.  Years and years of
inflammation in the small intestine damage the sphincter, which then
doesn't open when it should.  Biliary pain is caused by an obstruction to
the gallbladder when it tries to work.  The obstruction can be due to
gallstones or sphincter of oddi dysfunction.  Additional signs of SOD are
mildly elevated liver enzymes (AST and ALT).  It's encouraging that your
symptoms went away on a strict gluten-free diet.  If you are lucky, the GF
diet is all that you will need to treat this.  The ultimate treatment is
called a sphincterotomy, and is done during a procedure called and ERCP.
An ERCP to evaluate the pressures in the bile duct should only be
performed by experts.  Your average gastroenterologist shouldn't even be
doing these, but they'll never tell you this.  Travel to a large medical
center if  you ever have to have this done.  The best known specialists
for this are Sherman and Lehmann at Indiana University.  Mine was pretty
bad, and was not properly treated.  In fact, 2 ERCPs were botched
completely.  On a third try (by Sherman) I had a properly done
sphincterotomy, but it was too late, I already had chronic pancreatitis.
I wouldn't recommend having your gallbladder removed if it doesn't have
any stones.  This was done to me.  It mutes the pain, but doesn't relieve
the pressure.  This is what caused my pancreatitis.”

Two people reported that their young children have this pain. Two people
suggested it might be gas. Over a dozen people said they get this pain
when they eat gluten (one person said they have had it for over 40 years).
A few people say when they are strict on their diet the pain goes away.
Some of these people have had all the usual tests: gallbladder, liver,
pancreas, with nothing wrong in any of these organs. One person had their
gallbladder removed and it did help. Another person had their gallbladder
removed and it did not help. One person said it is a bowel obstruction
(that showed up in an x-ray) and drinking lots of apple juice flushes it
out. One person said the well water was suspect and had caused kidney
stones to build up. Several people suggested colitis, Chrons disease,
ovaries (mine have been removed), or appendix.

Thank you to everyone who took the time to respond. This sounds like this
right-side pain is a common occurrence in celiac people, but no one really
knows what causes it. The gluten must cause a reaction, therefore the
pain. Why don’t doctors look into this since it is so common? I do know
that taking the gluten completely away from my diet also removes the pain.
Incidentally, I have had digestive problems all of my life, but it was
after surgery a year ago that they became intolerable. I went to my doctor
last fall, and he diagnosed celiac disease at that time. It is my
understanding that surgery can often excellerate celiac disease. It
certainly seems to have done so in my case.

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