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Part 1-Celiac Presentations@national Digestive Disease Conf.: May 19-22,
2002
Dr. Kelly, who is a refractory sprue specialist, had interesting insights
into Celiac Disease.
He first described once having a patient say to him that “eating at a
restaurant or food take out is the gastronomic equivalent of  promiscuous
and unprotected sex because (you) don’t know where food has been, who else
it’s been with, and what you might get from it.”
Dr. Kelly explained that his job when seeing a patient with possible
Refractory Sprue is to first confirm that the patient really has Celiac
Disease and is adhering to a gluten-free (GF) diet.  He explained that some
patients would rather prefer an iron shot than adhere to a GF diet and that
sensitivities vary which removes another drive to say GF;  However, if
symptomatic,  he has found that the patient has the motivation to adhere.
He’s even had to recruit and train dieticians to take an interest in Celiac
Disease.
He said that “Celiac Disease or Gluten Sensitive Enteropathy is driven by
activated lamina propria T-cells to whom gliadin is being presented through
their T-cell receptors.”  In Refractory Sprue, he said that “the cells are
evident at intraepithelial lymphocytes rather than lamina propria
lymphocytes and they no longer require gluten in order to be driven.  So,
they’re on auto-pilot.”  He emphasized that this is a rare disease and
advised that doctors get a competent dietician to help patient adhere to
diet.
And if the concern is that the patient is adhering but is not responding, he
advised doctors to think of other disorders masquerading as Celiac Disease,
especially if patient is IgA, EmA (anti-endomysial) negative or if not HLA
DQ2 or DQ8 (common Celiac genes) positive.  He added that not every flat
mucosa consistent with Celiac Sprue is Gluten Sensitive Enteropathy but that
there can be a differential diagnosis such as cow protein intolerance.  He
said that there are unusual immunologic disorders that can be mistaken for
sprue or refractory sprue.   He said that doctors should consider these if
the patient was not IgA endomysial or human tTg (transglutaminase) antibody
positive at diagnosis.  He explained that “the positive predictive value of
those tests are so strong that really it’s in someways has a higher positive
predictive value than even biopsy that you don’t get very, very if any false
positives at least by the immunofluorescence assay.  So, if they’re negative
at diagnosis considering other possiblilities and this is one instance where
HLA typing actually may be clinically useful if you have a patient you think
has Celiac Sprue but isn’t behaving or responding as you would expect with a
gluten free diet and you ask do they really have Sprue.  If they are HLA
DQ2/DQ8 negative, then the likelihood of them having gluten sensitive
disease is much, much lower.
He said that serology (blood tests) were helpful but not be relied upon.  He
said  that “IG antibody levels against gliadin, or tissue transglutaminase
tend to drop fairly quickly usually within 2 to 3 months provided they
(patient) were positive to begin with. …The IgG takes much longer so it
tends to be less useful and of course, if they are IgA deficient, they won’t
be IgA positive to begin with and you can’t use then.  Even if their
antibody levels are high to begin with, and remain hjgh, that to me means
that they’re still exposed to the antigen and they still have T-cells.
Their lamina propia T-cells are still being driven by the antigen.  But if
they’re negative, I’m afraid that it’s not particularly sensitive and low
levels of gluten exposure may result in symptoms and poor response – would
not necessarily be identifiable by antibody….”
Dr. Kelly said that patients with subtle manifestations of Celiac Sprue who
have been previously diagnosed with irritable bowel or host of other
disorders are now being more frequently seen.  He said that there has been a
lot of discussion in the past year about Celiac Sprue being misdiagnosed as
Irritable Bowel Syndrome.
Also, he described the circumstance that patients with Celiac Sprue show
improvement both serologically (blood) and histologically (biopsy) but their
symptoms persist.  He said that doctors need to be aware that just because a
patient has gluten sensitive enteropathy doesn’t mean they can’t get another
gastrointestinal disorder.  He gave examples such as microscopic colitis and
what he called a classical association, hyperthyroidism, or something else
which could also cause diarrhea and weight loss.
Pls. see Part 2 including Dr. MacDonald and Dr. Fasano talks.
Laura




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