<<Disclaimer: Verify this information before applying it to your situation.>>

A recent poster asked about refractory celiac disease.  This is a highly
complex area and is the most challenging in dealing with celiac disease.
While refractory celiac disease can be defined as a patient with celiac
disease whose symptoms do not respond to a gluten free diet there are
several important questions and issues in coming to the determination
that the patient is really suffering from truly refractory disease.

        To make the diagnosis conclusively first one most be satisfied
that there is not another cause of the problem, though rare there are
other conditions that can mimic or coexist with celiac disease and cause
continued problems.  The second issue is whether the patient is truly
gluten free and have they been for long enough to conclude that there
has been a failure? To make this determination I have the patient keep a
complete and detailed dietary record for 3-4 weeks listing every single
item they ate and have them save the wrapper or  carton for review.  If
I or the dietitian feel that there is any possibility of contamination
then we exclude that item and wait longer.  Sometimes the patient is
exposed to a higher risk of gluten contamination by eating out a lot
where they do not have true control over the food preparation.  We check
medications that the patient takes regularily.   I also check the
endomysial antibodies and gliadin antibodies.  These should be negative
if the patient has been gluten free for at least 6 months.  The gliadin
IgG may persist longer but usually its levels drop.  If these are
positive then that makes me think that they have had significant gluten
in the diet in the recent past.  ( Note : there still may be gluten in
the diet if the test is negative)  The original and follow up biopsies
should be compared to see if there has been any improvement.
Assuming that these criteria are met then one can proceed to consider
the patient to have refractory disease.

At that point it is important to check for complications such as
lymphoma, lymphocyctic colitis and possibly pancreatic insufficiency.
I treat the patient with an course of antibiotics and consider adding in
pancreatic supplements to see if that will help the patients symptoms.
It is only at this point do I consider some suppression of the immune
system such as with steroids or some other agent.   Rarely then patient
may be so ill that one must accelerate the decision to treat with
steroids.   Steroids are powerful medicines that can be very helpful and
even lifesaving in many diseases but have attendent risks that should be
discussed prior to use.

This is not medical advice and should not be used as such.
Joe Murray