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Initial Assessment and Follow-up Care of Celiac Patients
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by Peter Green, MD
summarized by Sue Goldstein
Dr. Peter Green is a gastroenterologist and the director of the GI
Endoscopy Unit at Columbia-Presbyterian Medical Center in New York
City. He has a large celiac patient base. On September 29th, Dr.
Green spoke to the Westchester Celiac Sprue Support Group and
presented an excellent review of the medical care an adult Celiac
patient should receive. What follows is a summary of Dr. Green's
presentation, compiled by Sue Goldstein, a past president of the
Westchester group. (This has been reprinted with Sue Goldstein's and
Dr. Green's permission.)
Initial Assessment
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Dr. Green sees a lot of patients who, either through their own
frustration or because of physician advice, have started a gluten-free
(GF) diet without obtaining a biopsy-proven diagnosis of celiac
disease (CD). However, the need for a biopsy to establish a diagnosis
of CD must be emphasized. CD is a lifelong illness with serious
potential implications. In addition, sensitivity to gluten doesnt go
away, and a radical lifestyle change is involved. You also need to be
certain of the diagnosis because celiac patients families should be
screened. The initial biopsy is also needed to serve as a baseline
because one doesnt know what the future may involve.
Basic blood work is also included in the initial assessment. Such
things as anemia and liver function need to be looked for. But its
very important to go further than that, and knowledge of the
physiology of the small intestine should lead a physician to measure
those nutrients that could be malabsorbed. CD involves the small
intestine, where iron, folic acid, calcium, fat soluble vitamins (K,
A, D, and E) and zinc are absorbed. These nutrients should be
measured in the initial assessment and also during the course of the
illness. Physicians will see patients who present with malabsorption
of just one of these nutrients. If they are aware of the consequences
of all these nutrient deficiencies, it will help them consider CD as a
possible diagnosis.
The patient should also have the celiac antibodies blood testing, but
the diagnosis is still established on the biopsy pathology. In Dr.
Greens experience, about 30% of celiacs have negative antibodies at
diagnosis, so positive antibodies are not required to make the
diagnosis. Antibodies testing often helps establish the need for a
biopsy, but they also have great value in establishing a baseline so
that an assessment can be made on how the patient is doing later on.
All the antibodies should normalize, in time, when gluten is
eliminated from the diet.
What about the patient who seeks a diagnosis, but has already
eliminated gluten from the diet? It is very difficult for many
patients to go back on a gluten-containing diet to secure a
biopsy-proven diagnosis. This can often take three to six months or
longer. Columbia-Presbyterian has been talking about setting up
alternative means of securing a diagnosis, such as a rectal challenge.
The physician can take a biopsy of rectal tissue, and then instill
gliadin extract into the rectum and do a repeat biopsy a certain
number of hours afterward to demonstrate an inflammatory response
similar to that in the small bowel. However, interpreting the results
of the gluten challenge would require a pathologist who is very
experienced, and sophisticated immunology on the cells of the rectal
biopsy may be needed.
Follow-up Care
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Soon after diagnosis and adhering to a GF diet, patients will often
report an increased feeling of well-being. How well they feel--and
how quickly--will also depend on what the manifestations of their
disease were. For example, if the patient was iron-deficient, it will
take time for the iron stores to be repleted.
An assessment of vitamin and mineral levels should be part of the
follow-up care. Specific deficiencies need to be addressed, treated,
and monitored. Patients have been seen who have been ingesting too
much of the fat-soluble vitamins, with resulting problems such as
liver disease (from vitamin A toxicity), and hypercalcemia (from
vitamin D toxicity) which can cause confusion, constipation, and
kidney problems. Certain vitamins and minerals may need to be
administered, but the patient should be under a physicians guidance as
to how much should be taken.
After a diagnosis of CD, a bone mineral density test should be
performed to assess the condition of the bones. Reports have shown
that between 50-100% of people at initial diagnosis of CD will have
osteopenia or osteoporosis. Ostopenia is thinner bones, usually less
than 2 standard deviations from normal. Osteoporosis involves an even
greater deviation from normal.. In Dr. Greens experience, nearly
100% of the celiac patients at diagnosis will have osteoporosis.
Surveys of celiac patients have shown an increased incidence of
fractures prior to diagnosis and after diagnosis. If the bone mineral
density is low, the patient should be referred to a bone mineral
expert for assessment and specific individual treatment. For example,
calcium and vitamin D needs will be addressed and monitored, and
exercise and hormone replacement (in post-menopausal women) will be
considered.
At diagnosis, patients should get a Pneumovax, because it is very
common for celiacs to have poor splenic function, which puts them at
risk of developing certain bacterial infections such as pneumoccal
pneumonia and meningitis.
Since there is a genetic predisposition to CD, another important issue
in the follow-up is screening family members for CD. Children and
other first-degree relatives should have their antibodies status
measured. About 10-15% of first-degree relatives have positive
antibodies, and the bulk of the people with positive antibodies will
have the disease, even though 50% of those people will be
asymptomatic, even with a flat biopsy.
What annual follow-up care should the celiac patient be getting? The
most important thing is a good physical examination. Blood work,
x-rays, CAT scans, mammograms and PSA tests, while valuable, do not
replace a physical examination. The physical exam should include a
breast exam for women, prostate exam for men, and a rectal exam for
everyone. Blood work should include measurements of folic acid,
calcium, and iron, and antibodies testing. Bone mineral density
testing should be repeated annually for those with abnormal results,
and every several years for those with normal results.
Finally, patients with CD should have at least one follow-up biopsy to
confirm response--normalization of the biopsy sample. Patients who
are non-responders, or whose clinical situation is somewhat confusing,
may need more repeated biopsies at intervals.
Non-responders
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What about the non-responders or people who relapse? The first thing
is to check the diet with antibodies testing. People may be ingesting
gluten, such as in medications, and not be aware of it. They may be
getting gluten from licking stamps or envelopes. They may have
misinformation from food labels or manufacturers.
However, the antibodies can normalize and the biopsy still look quite
flat, so once again, the antibodies have only a limited value--but
they are still important to measure. It is also important to check
the original biopsy to make sure of the diagnosis. Not all
pathologists are experienced enough to properly diagnose CD.
Pathology departments, by law, have to keep the biopsies for a lengthy
period of time--some keep them for 50 years. So it is important for
the physician to review the biopsy sample with a pathologist who
understands the spectrum of CD. The pathologist needs to know, for
example, how to identify latent CD and different subtle aspects of the
biopsy, such as increased intraepithelial lymphocytes.
A problem that comes up in non-responders is other food sensitivities.
Its very rare for people with CD to also have sensitivities to other
foods that result in the abnormal biopsy. There are, however, reports
of ingestion of soy protein or egg or some kind of meats that cause
the biopsy not to normalize.
There are other conditions that can co-exist with CD and confuse
physicians. For example, pancreatic insufficiency can cause diarrhea
and steatorrhea (malabsorption of fat), and bacterial overgrowth can
affect absorption of nutrients. Patients may have colonic pathology.
Having one disease doesnt mean you cant have another disease, and
other conditions need to be investigated in the CD patient who isnt
doing well.
When there is no improvement in the biopsies, patients remain at the
risk of developing or maintaining bone disease and vitamin
deficiencies, and they are at a higher risk for malignancy. Patients
who are refractory may need other therapies such as corticosteroids or
immunosuppressent drugs such as cyclosporin. One doesnt engage in
these therapies lightly (for example, steroids will thin the bones);
being closely evaluated while on these drugs is important.
Prognosis for the Celiac Patient
--------------------------------
The studies that have indicated increased mortality in CD are from
other countries where people have different smoking and dietary
habits. It is hard to extrapolate these studies to our patient
population.
Dr. Green believes existing studies indicate that the mortality rate
among adult celiacs is about two to three times that of the general
population, and the increased mortality is found mainly in the first
five years after diagnosis. After that, the mortality rate approaches
that of the normal population. That tends to suggest that it is the
continued ingestion of gluten that is responsible for the increased
mortality. This is especially so in regard to malignancies, where the
risk of diagnosis of malignancy such as lymphoma is usually highest in
the first year after diagnosis, and then decreases in incidence
downward until it equals that of the normal population after about
five years. There is certainly the suggestion that adhering to a GF
diet reduces the risk of developing a malignancy.
A Final Word--Looking For Celiac Disease
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Traditionally, the incidence of CD in this country, based upon
epidemiological work, suggests that CD occurs in about 1 in 4,600
people. Certainly its much more common than that. Serology testing
of blood donors by Dr. Fasano suggests the same prevalence as in
European countries, about 1 in 300 people. Dr. Green, who does a lot
of endoscopies, has found an incidence of CD in about 1 in 280
patients who were having endoscopies for reasons other than suspicion
of CD. It is important, therefore, for the gastroenterologist to have
a higher suspicion for the possibility of CD, and for physicians to
screen for CD, particularly among their patients who have associated
diseases such as Insulin Dependent Diabetes, Sjogrens, and Autoimmune
Thyroid Disease.
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