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"Celiac in the 90s"
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by Dr. Joseph Murray
summarized by Jim Lyles
Dr. Joseph Murray, of the University of Iowa, is a gastroenterologist
that specializes in treating Celiac disease. He gave a talk entitled
"Celiacs in the 90s" at a conference hosted by the American Celiac
Society on June 10-11, 1994. What follows are highlights of Dr.
Murray's talk.
Dr. Murray comes from Ireland, where Celiac Sprue (CS) is much more
common. In Ireland, people have a much easier time dealing with the
gluten-free (GF) diet, whereas in the US it is almost as though it
were considered unpatriotic to not eat wheat.
Dr. Murray believes that ALL Dermatitis Herpetiformes (DH) patients
also have Celiac disease, whether they realize it or not. This
celiac disease is often latent or silent. Earlier reports of
patients with DH who did not have enteropathy (small intestinal
damage) may not have counted milder forms of the celiac disease
damage. (Editor's note: Dr. Alexander, our physician advisor,
believes most, but not all DH patients have Celiac disease.)
Not every Celiac patient suffers weight loss or has diarrhea. One of
his patients is a woman who weighed 400 lbs. when she was diagnosed.
Her symptoms included nocturnal pain, and constipation. After
checking the stomach and some other testing, they did a small
intestine biopsy. When they found the classic flat villi, they
suspected a lab mix-up because the woman's symptoms were so atypical.
In this case, the woman was suffering from cravings that caused her
to greatly overeat. She was nutritionally over- compensating for the
small intestine damage. After being diagnosed, the patient went on
the GF diet, lost some of these cravings, and promptly lost 50 lbs.
Symptomatic Celiacs can be split into two groups: Those that have the
classical CS symptoms and those that have atypical symptoms or only
one of the classical symptoms. Patients in the first group are
usually (though not always) diagnosed correctly by a
gastroenterologist. Those in the second group, which make up about
2/3 of Dr. Murray's patients, are much more difficult to diagnose.
Another factor is "variable histology", which basically means that
the villi are not always completely flat.
The average adult has more than 20 feet of small intestine, and
often, only the very front part gets severely damaged. Often, the
remaining portion of the small intestine is able to compensate for
what the damaged section is not absorbing.
Dr. Murray believes that we are seeing fewer diagnosed Celiacs in the
US than in Ireland because our diets are very calorie-dense. This
means that even with malabsorption you are still getting a lot of
nutrients so that you absorb enough to not lose weight and not fully
develop other symptoms.
Gluten causes damage that makes the gut "leaky". This can lead to
exposure of the body's immune system to foreign allergens it would
not otherwise see. This explains why Celiacs tend to have more
allergies than the general population.
Dr. Murray believes there are several "triggers" that can activate
Celiac disease in genetically susceptible people:
* A sudden change to a low fat diet, which usually means a sudden
increase in starches, which usually means a dramatic increase in
wheat-based products.
* A woman is susceptible during postpartum, when the immune system
is adjusting to the changes after delivery.
* Surgery, particularly GI (gall bladder, etc.) can be a trigger.
* Certain viral infections. Also, there is some suspicion that
certain antibiotics can be triggers, though in these cases it
could also be the infection that the antibiotics are fighting.
Dr. Murray believes CS is not an allergy; it is an auto immune
disease. For Celiac disease to develop, two conditions must be met:
1. There must be a genetic predisposition towards Celiac disease.
This involves very specific genetic factors.
2. The auto immune system must be triggered in some way.
CS tends somewhat to run in families. The incidence in first degree
relatives (parents, siblings, children) of a Celiac is about 10%.
Anyone who has both a parent and a child with CS should be tested
themselves for CS.
CS is not entirely genetic. Among identical twins, if one has CS,
about 70% of the time the other will also have CS. If the disease
were entirely genetic, then the incidence in identical twins would be
100%. Among siblings that are HLA-matched to a Celiac sibling, the
incidence of CS is about 30%. When not HLA-matched, the incidence
rate is much lower.
According to Dr. Murray, since CS is an auto immune disease, it
follows that there are other auto immune diseases that are associated
with it. Rheumatoid Arthritis, Lupus, Type I Diabetes, and some eye
problems may occur more frequently in CS patients. This is not
because of gluten or CS itself; it is because CS patients are part of
a group that is genetically predisposed towards auto immune problems.
About 5% of CS patients also have DH. At the University of Iowa,
there have been 350 patients diagnosed with DH. Dr. Murray believes
these have celiac disease. If these DH patients are only 5% of the
Celiacs, then there should be about 7,000 Celiacs in the Iowa area.
The number of diagnosed Celiacs is much less than 7,000. Even if
this extrapolation is exaggerated, it is still clear that there are
many undiagnosed Celiacs out in the general population.
Most DH patients are prescribed Dapsone, which treats the symptoms.
In most cases, they are told of the GF diet, but it is not stressed
and so most DH patients do not follow the diet. Dr. Murray finds
this most distressing, because even if these patients don't have
GI-related symptoms, there is still continual damage being done to
the small intestine. Dermatologists, in general, don't give enough
consideration to a GI problem as the source of DH. This places DH
patients at an even greater risk of developing lymphoma in the small
intestine.
Lymphoma in the small intestine is extremely rare in the general
population. Untreated Celiacs have a 70 or 80 times greater chance
of developing lymphoma. A lifetime of not following the GF diet
gives a Celiac about a 7% chance of developing lymphoma. There is
also an increased risk of other GI-related and lymphatic cancers.
The risk of developing lymphoma immediately begins to decrease when a
Celiac patient starts following a GF diet. The risk continues to
decrease until, after 3-5 years, it approaches that of the general
population.
Dr. Murray makes a small intestine X-ray a routine part of the
treatment for a newly diagnosed adult Celiac patient, especially
those over 40 years of age. He's looking for lymphoma in the small
intestine. It is very difficult to find, but if it is found it can
usually be successfully treated.
DH is caused by reactions to antibody complexes that, for reasons not
totally clear, become deposited under the skin. These DH breakouts
can continue for a long time after a GF diet is adopted, because
these deposits are not reabsorbed by the body very quickly. In about
70% of the cases, dapsone treatments can be discontinued after 18
months-2 years; for the other 30% it takes longer.
How gluten-free should the diet be? Dr. Murray believes that Celiacs
should treat gluten the same way they treat rat poison. Celiacs
should never eat food if it is known to contain gluten. Accidental
ingestion of gluten should be avoided as much as possible. For a
Celiac, it is unacceptable for gluten to be ingested more than once a
month, accidentally or otherwise.
You can NOT judge whether a food has gluten by your reaction to it.
Many Celiacs can ingest small amounts of gluten with no symptoms;
however, the small intestine is still being damaged.
Dr. Murray stressed that once you have Celiac disease, you will
always have it; you will never be able to eat wheat or other
gluten-containing products again. This is a fact of life that
Celiacs simply must accept and live with.
Lactose intolerance is not common in white Caucasian adults of
northern european descent; probably close to 5%.
(Editor's note: According to Dr. Alexander, it occurs in about 30% of
the adult US population.) A newly diagnosed Celiac may have
temporary lactose-intolerance due to the damage in the gut; the
intolerance should disappear once the gut heals. If you are
lactose-intolerant, you should be aware that while ingesting lactose
may make you uncomfortable, it does not damage the intestine. Most
newly diagnosed Celiacs can use temporary lactose-intolerance as a
way to check on the healing taking place. Once a month, they should
drink half a glass of milk on an empty stomach and see if there is a
reaction such as gas, cramps, diarrhea, etc. Failure to have a
lactose reaction means that the gut is healing and the diet is
working. For most people, lactose intolerance will disappear within
six months of being on a GF diet.
Dr. Murray advises Celiac patients against smoking. Newly diagnosed
Celiacs, as well as those not following a strict GF diet, already
have an increased risk of malignancy. Celiacs cannot afford to
increase that risk even further by smoking.
Refractory Sprue is a rare complication that generally occurs in
older Celiac patients. This is a situation where malabsorption
continues to occur even though the patient is on a GF diet. Dr.
Murray says the first three things you do when presented with
refractory sprue are:
1. Check the diet.
2. Check the diet again.
3. Check the diet a third time.
Once you have verified that no hidden sources of gluten are causing
the problem, then you recheck the diagnosis, look for enzyme
supplements to help with digestion, check for pancreatic problems,
lymphoma bacterial overgrowth, etc.
Diagnosis of CS in the US is probably lower than it should be due to
rigid medical practices and old thinking. One common label applied
to people with stomach complaints is Irritable Bowel Syndrome. Dr.
Murray calls that an intellectual trash can if it is used too widely
and if doctors forget about other possibilities, in that it is
occasionally over-diagnosed. It really means, "There is something
wrong with your stomach, and we don't know what it is." The
occurrence of stress-induced bowel dysfunction is a real entity.
In the US, CS is an exception to the rule concerning research
efforts. It is considered to be a marginal disease. There is very
little commercial interest in it. CS is definitely under-represented
when compared to other diseases that get far more attention.
Dr. Murray believes there are too many different national
organizations that deal with CS. He believes these organizations
need to unify and become one in order to advance the national agenda.
He thinks local support groups such as our TCCSSG are doing a lot of
good work; he considers belonging to a support group to be an
essential part of the treatment of Celiac disease.
Dr. Murray recommends physicians associated with local support groups
should read a book that thoroughly explains this disease. The book
is Coeliac Disease, by Michael Marsh, Blackwell Scientific
Publications, November 1992. It costs about $160, but is well worth
the cost if it helps a physician become more interested and learn
more about this disease.
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