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Q & A With Dr. Murray
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summarized by Jim Lyles
Dr. Joseph Murray, one of the leading USA physicians in the diagnosis
of celiac disease (CD) and dermatitis herpetiformis (DH), spoke at our
October meeting. Dr. Murray originally came from Ireland and got his
medical degree and a doctorate from the National University of Ireland
in Galway. His residency was at the University of Dublin and he
completed his fellowship in gastroenterology at the University of Iowa
College of Medicine, where he has been since 1988. In our last
newsletter we gave some highlights from his talk.<1> In this article
we are including highlights of the question and answer session which
followed his talk.
Dr. Murray started off the questions and answer session with a
warning: All the information from his talk and from the question and
answer session is "general" information. It is NOT specific
information for you to go home and act on. Every celiac is unique,
with unique problems. Anything that requires medical intervention
needs to be discussed with your personal physician. Nutrition
questions should be discussed with your dietitian. It is important
that people do NOT go off and self-medicate, self-treat, or
self-diagnose.
It may seem simpler and cheaper to do without an official diagnosis.
You may think, "Why should I go see my doctor, when I'm feeling good?"
The answer is that it is important for your doctor to see you when
you're feeling good, because a year from now you may not be feeling
good.
Q: What is the latest on the oats question?
A: A lot of time was devoted to the oats question at the Tampere
conference.<2> As you know, there was a Finnish study published
in the New England Journal of Medicine doing a six-month follow-up
on patients with CD that had been eating oats. The study compared
their intestinal biopsies after six months with CD patients on a
regular GF diet. Note that in this case GF has a different
meaning, because they allow wheat starch as part of the GF diet
there, which is generally not recommended in this country. The
same percentage in both groups still had intestinal damage, and
the two groups had similar symptoms. There have also been a
couple of other studies in Sweden and Denmark, confirming these
findings.
However, we need to consider a couple of things. In the study
they used a batch of oats that was specifically grown for the
study. These oats were examined in the field and it was verified
that there were no contaminating grains such as barley or wheat
also growing there. These oats were then specially milled and
specially stored for the study. Finally, these oats were tested
using the most sensitive methods available for any wheat
contamination.
There were several presentations at the conference about testing
commercial sources of oats in different European countries. About
10% of commercial oats and wheat-free oat-containing foods were
found to have significant traces of wheat gluten in them. These
tests have not been done in the USA, so we don't know how pure the
oats would be in our country. Some of the largest cereal plants
in the world are in Cedar Rapids, my home. I know people who work
there and there is a lot of cross-contamination in that large
setting of wet-milling and dry-milling of oats and other grains.
So it is probably not safe for celiacs to consume oats that are
commercially available in the USA.
Oats, rye, and barley, and to some extent, wheat; are all grown in
the same fields, often in rotation one year after another. So
there will always be some "wild" shoots sprouting from the seeds
of the previous year's crop to contaminate the current crop. This
problem does not occur with rice because rice is cultivated in an
entirely different way.
Another point to consider: The studies that were done used 50
grams of oats per day, which is a little under two ounces. That
is not very much, and may not have been at a high enough level to
cause any significant intestinal damage in only six months.
So unless you can get a hold of a batch of oats as pure as that
used in the Finnish study, oats are probably not safe for celiacs.
Q: I have optic neuropathy, which has been attributed to my CD. Do
you see this very often?
A: There are several eye problems that can relate to CD in many ways.
Vitamin A deficiency is the most important factor. Other related
causes include autoimmune neuropathy, in which the body's immune
system attacks other tissues, and the optic nerve is one
possibility.
If Vitamin A is taken in very large quantities then eye problems
can develop as well as intercranial hypertension (high pressure in
the fluid surrounding the brain). This is another reason why you
should not go off and take massive amounts of vitamins without
professional advice.
Q: Is alcohol consumption a factor in causing, worsening, or
contributing to the development of CD?
A: Yes, if it is whiskey or beer, because these come from a gluten
grain. But alcohol itself probably does not bring on the damage
associated with CD, and may even suppress some of the symptoms by
making you feel "good" (i.e., intoxicated). For anybody to drink
more that two alcoholic drinks per day, five days a week, is
probably not a good idea. For women, that is just about the
threshold for causing liver damage, regardless of whether you are
a celiac or not.
Also, celiacs may be more sensitive to the effects of alcohol.
Q: Can you touch on the importance of being biopsied before going on
a GF diet?
A: Things get difficult when you come to a GI specialist after having
already been on a GF diet. At best, you will be facing a gluten
challenge, which may take some time to define it; and you may get
really sick. I'd say about half of the patients who come to me in
that situation cannot tolerate being on a gluten challenge.
If somebody who does not have a family history of CD comes to me
and says, "I think I have CD. Do I really need a biopsy?:" Well,
it may be important for their family. He may think he has CD and
has gotten better due to the GF diet, but he may not actually have
it.
Q: Please discuss intestinal complications associated with CD.
A: Lymphoma is one of the complications. It is a cancer of the
lymphocytes, which are the same cells that attack gluten and your
body, causing the intestinal damage. Those cells are growing and
dividing at an accelerated rate to fight off the gluten, and then
something triggers one to turn into a lymphoma. It is rare in
treated celiacs, but it does happen. It is like smoking and lung
cancer; the longer you've stopped smoking the less chance you have
of getting lung cancer. The longer a celiac has been GF with a
healed small intestine, the lower the chance of getting lymphoma.
After 20 years on a GF diet your chances of getting lymphoma are
very small. If a child is diagnosed with CD and sticks to a
lifelong GF diet, the odds of getting lymphoma are probably the
same as for the non-celiac population.
Q: Is the danger of intestinal cancer as high with DH if you are not
completely compliant to the GF diet?
A: It is probably not quite as high in DH as in CD, but it still
happens and there still is an excess of lymphomas in DH patients,
especially in middle-aged men.
Q: What causes ulcers?
A: Most duodenal ulcers are caused by a bacterium in the stomach. If
you treat that bacterium, the ulcer will disappear and not come
back about 90% of the time, except for patients on arthritis
drugs. But there is a smaller group of people who have duodenal
ulcers caused specifically by CD. These ulcers go away on a GF
diet.
Currently, duodenal ulcers are detected by performing an endoscopy
to see the ulcers and taking a stomach biopsy to find the culprit
bacterium. Once this has been done the ulcers are treated by
using antibiotics to combat the bacterium which is responsible for
the ulcer. I like to go farther and take a biopsy from the
duodenal area [which is the first section of the small
intestine--ed.] Also, because I've found that for some of our
patients the ulcer is not caused by the bacterium, but rather by
untreated CD.
Q: Can you have dermatitis herpetiformis (DH) without having CD?
A: If you have DH, then you have an intestinal sensitivity to gluten.
If you eat gluten, you will have some damage to your intestine.
That damage may become more significant as you get older. I've
seen patients that managed just fine for years using dapsone, who
then come in to see me, complaining of GI symptoms. The treatment
for both CD and DH is a GF diet. If you have DH you may also find
some relief from dapsone, which suppresses the symptoms until the
diet takes effect.
Q: Is there an association between Down's Syndrome and CD?
A: People with Down's Syndrome are much more prone to having CD.
Different studies suggest anywhere from 2-40% of Down's Syndrome
patients have CD. Down's Syndrome patients are prone to other
autoimmune problems such as thyroid disease. It is not known if
CD occurs in African-Americans or Asians with Down's Syndrome;
this just hasn't been studied.
Q: Is TPN (Total Parenteral Nutrition) GF?
A: It is pretty reliably GF. Another thing to consider is that you
can't get a gut reaction from it, because it bypasses the gut
entirely.
Q: Can you touch on bone pain?
A: The most common cause of severe bone pain with untreated CD is
osteomalacia, which is malformation of the bones due to lack of
Vitamin D and calcium. It affects mostly the hips, and sometimes
the shoulders and back. It usually gets better with specific
treatment, which includes the GF diet for celiacs and sometimes
includes Vitamin D supplementation and other interventions.
Another cause of bone pain is osteoporosis. It can often cause
pain in the back, due to vertebrae which have become shortened and
have begun squeezing the nerves. This condition is very painful
and is not going to get better; once the vertebrae have shortened
they are not going to stretch back up to their original size.
Muscle pain can also occur, due to Vitamin D deficiency. I have
seen some leg pains as the initial presentation of CD which
cleared up with the GF diet.
Q: Is there any kidney disease associated with CD?
A: Yes: IgA nephropathy, which is a common condition causing blood
in the urine (possibly in microscopic amounts that would not be
detected visually), may be caused by CD. This may be similar to
what happens in DH, where antibodies produced in the intestine get
deposited under the skin. In IgA nephropathy, you've got IgA that
was produced somewhere (we don't know where) getting deposited in
the kidneys, causing secondary damage to the kidneys.
Q: What is the treatment for arthralgia (joint pain)?
A: Celiacs with arthralgia at the time they are diagnosed often get
better on a GF diet. Sometimes anti-inflammatory drugs are
needed. Occasionally there are other dietary sensitivities which
cause arthralgia.
Q: Is there any research being done on finding something to
counteract gluten?
A: It is being "thought about", but there is no current research.
Researchers are thinking about how you can "turn off" the immune
system's response to gluten. The problem is, it may turn off more
than just the response to gluten, which would be a problem. What
we need is for the immune system to recognize foreign invaders,
but not recognize gluten. I think we are a long ways from coming
up with a safe, acceptable alternative to the GF diet.
Q: I have both lupus and CD. What studies have been done to
determine the frequency of CD in lupus patients?
A: There hasn't been very much research in this area. It is probably
a little bit more common than in the general population. CD is
also more common in scleroderma and Sjogren's patients. That is
because these diseases all come from the same autoimmune
tendencies.
Q: What can you say about the importance of having first-degree
relatives screened for CD?
A: I think it is important. We find a significant number of our
patients by looking at family members of celiacs. It is always
better to avoid illness. If someone has CD it is a whole lot
better to find out about it early, and to be on a GF diet. It is
still somewhat debatable in expert circles as to how you handle
the asymptomatic family member who has intestinal damage. Some
people say it is a greater hardship to impose a GF diet on them
when they are not symptomatic. I tend to think otherwise. I say
it is a whole lot better for them to avoid getting sick by
learning to avoid gluten from an earlier age.
Why isn't CD suspected by gastroenterologists more often? For one
thing, they are being taught in this country that it is very rare.
Many gastroenterologists, from very fine, world-class programs,
have never seen a case of CD. Why? Because many of those
programs are based in inner cities, where CD is not all that
common. Or they come from centers that are specialized.
30 years ago Inflammatory Bowel Disease (IBD), which collectively
refers to Crohn's disease and ulcerative colitis, was considered
to be a mystery. President Eisenhower had Crohn's disease and
people were amazed because it was thought to be so rare. More
recently, we learned that President Bush's son had either Crohn's
disease or ulcerative colitis, and there was not much of a public
reaction. So in 30 years public awareness of IBD has greatly
increased.
The Crohn's/Colitis Foundation (CCFA) is probably the single
best-organized support organization for furthering knowledge about
IBD. It funds research in most medical centers. There are GI
Fellows that are funded by the CCFA, some of whom go on to be
faculty in our medical schools where they teach about IBD. So
most gastroenterologists come out of medical school knowing a lot
about IBD. And a lot of it is due to the efforts of the CCFA.
Ulcer research has been funded mostly by drug companies, who are
trying to find better ways to treat ulcers. As a result, ulcers
are also in the public eye.
CD has been more "covert". However, that is changing. In Iowa,
many private practitioners that were not diagnosing any CD five
years ago are now diagnosing 10-12 new cases a year, simply
because they've become more aware of it. The efforts are
beginning to pay off: internet efforts, the various support
organizations getting hooked up with people like Dr. Alexander
[our group's physician advisor], spreading and exchanging
information.
But the pity is that all these efforts are not on the level of an
organization such as the CCFA. That sort of effort is what really
gets attention and gets built into the curriculum at medical
schools.
Q: Are Vitamin B-12 shots often given to celiacs?
A: Vitamin B-12 deficiency is usually caused by a malabsorption
problem. B-12 is important for nerve function and for making
blood cells. A B-12 deficiency can cause temporary problems with
making blood cells, but with nerve function the damage may be
permanent or only improve months or years later. So if a patient
is B-12 deficient then regular shots are generally used to ensure
that the levels of B-12 are adequate. The shots bypass the
intestine, so any malabsorption problem is avoided. The shots are
safe and cheap, whereas the tests for B-12 absorption are not; so
I will often put someone at risk for B-12 deficiency on B-12 shots
for the rest of their life. The problem with B-12 deficiency is
that the first symptom to show up may very well be a serious
neurological symptom that the patient may not recover from.
Q: Can a person who tests allergic to gluten also have CD?
A: When you speak of an allergy, you aren't talking about gluten.
Some people have a wheat allergy, with symptoms such as hives,
swelling, etc.. That doesn't mean they have CD; but like a celiac
they certainly should not eat wheat. Some celiacs develop other
allergies, probably because their gut is more permeable due to the
villi damage. They can get allergies to other things (not just
wheat) such as peanuts or shellfish.
Q: How important are periodic bone density tests?
A: I would tend to do a bone density test on most adult patients at
least once at the time of diagnosis. If the test comes back
normal, then I don't usually repeat it. If it is very low, then I
tend to repeat it 18-24 months later to see how much improvement
has occurred.
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