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Q & A with Our Advisors
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Thomas Alexander, MD
Dorothy Vaughan, RD
summarized by Jim Lyles
At our September meeting, we heard presentations from three of our
members that attended the celiac conference in Baltimore. Summaries
of these talks appeared in a previous issue of _The Sprue-nik Press_.
Afterwards, we had a question and answer session with our two
advisors, Dr. Thomas Alexander and Dorothy Vaughan, RD. We also had
a few questions directed at the three members that made presentations
(Kathy Davis, Mary Guerriero, and Jim Lyles). This article highlights
that question and answer session.
In reading this remember to take it only as general information.
Discuss things with your doctor before taking any action as a result
of this article or anything else you read.
Q: Will in vitro lab testing eventually let us do away with the
gluten challenge?
Dr. Alexander: In vitro means in a bottle or test tube, instead of in
the body. This suggests the possibility of testing the immune
system's response by using a tissue sample, instead of
reintroducing gluten to the diet and testing the body's response.
It is too early to tell yet, as these tests are on the cutting
edge of current research. It will have to be tested in multiple
studies, at different labs, to see if the results are repeatable
and consistent.
Q: How common is celiac disease?
Dr. Alexander: In reviewing the syllabus for the Baltimore
conference, there are some points that I wonder about. The
syllabus suggests the frequency of celiac disease (CD) may be one
in 250 people. Perhaps it is in Ireland and certain other
locations where there is a homogenous population this may be true.
But could it really be one in 250 people in Italy, which is
practically synonymous with pasta? You would expect there to be
an epidemic of complications. Perhaps the definition of CD used
in these studies is less stringent than it is here. If the
studies are based on symptoms or positive blood tests, they could
be including a lot of false positives in their statistics. Or
perhaps the studies are based on relatives of celiacs, in which
case you would pick up a higher percentage of celiacs than you
would from the general population.
Q: How should the celiac blood tests be used in diagnosing and
treating CD?
Dr. Alexander: The way to diagnose CD is not to say, "I have this
patient with diarrhea, and everything's normal with the X-ray.
That suggests CD. Let's put him on the diet and see what
happens." And when the patient gets better you say, "Ah ha,
that's what the patient has." That may not necessarily be the
case. All too often, I've seen a patient diagnosed with CD 20
years earlier because they were put on a GF diet and got better.
It may have been something else entirely with the apparent
improvement from a GF diet being coincidental.
I've had patients that say, "I can't eat wheat, corn, or rice;
they give me diarrhea. So I must have CD." As you know, these
are not all gluten-containing grains. In these cases it is quite
possible that CD is not the correct diagnosis.
CD is usually diagnosed as follows: First, the patient undergoes
the celiac antibody blood tests. Different studies have suggested
one or the other of the blood tests is best. I use all three of
them: antigliadin, antiendomysial, and antireticulin. You might
have only one or two positive, or all three. Next, you have a
small intestine biopsy done. This should be done before you start
a GF diet. If the biopsy results are consistent with CD, then you
probably have your diagnosis. At this point you start the GF
diet. Six months or (preferably) a year later you repeat the
biopsy. If the biopsy results are substantially better, that
completes, or at least strengthens the diagnosis. If you want to
put the icing on the cake, you can repeat the blood tests too and
see if they are now negative.
Some doctors suggest using the blood test to see if the patient is
complying with the GF diet. I don't think you need to routinely
do the blood tests with all patients. I think that most patients,
if you are honest with them, will be honest with you about whether
or not they are complying with the diet. It would be like testing
the blood alcohol level of a recovering alcoholic.
You can use the blood tests with patients when they are not sure
how well they are complying. But some of these antibody levels
may stay elevated for years or may never normalize, although for
many patients they eventually do normalize.
IgA antibodies for each of the tests (antigliadin, antiendomysial,
and antireticulin) quickly become elevated in a non-complying
celiac; the IgG antibodies become elevated later on. When you
start the GF diet, the IgA levels come back down the quickest,
while the IgG remains elevated for a much longer time.
Some celiacs can be IgA deficient. An elevated IgG and normal IgA
is possible for these celiacs, if they have not been on the diet.
Q: Is the follow-up biopsy really necessary after being on the diet
for six months to a year?
Dr. Alexander: Yes, as was discussed above. Repeat biopsies
thereafter are generally not necessary as long as the patients are
feeling well, and biochemically they are looking good on paper.
What we recommend is about once a year get the routine blood count
and biochemical panel. It is also a good idea to check iron
levels, vitamin B-12, and folic acid. With women I'm starting to
get vitamin D levels also, because you can get accelerated
osteoporosis with them.
Q: If you do the repeat biopsy, and it comes up negative, what should
you do next?
Dr. Alexander: First of all, you should accept the diagnosis. If you
are feeling better and doing well, then it is just a matter of
maintaining your newfound good health with a GF diet.
If you are not doing well and your biopsies are not improved, then
you should recheck your diet and make sure it is as GF as you can
make it. If the diet is truly GF, then you may be going into the
dangerous but uncommon condition known as refractory CD (also
called refractory sprue).
Q: What is the problem with annatto color?
Dorothy Vaughan: I called the FDA in Washington about annatto color,
and I am waiting for some printed information. When I get the
information it will be published in a future newsletter. I
haven't been concerned with this in the past; this is somewhat of
a new issue. This issue really applies to all natural colorings
and flavorings.
The concern would be: Is that coloring or flavoring extracted
with alcohol? If so, then the next question is: Is it a
distilled alcohol? Finally, if a distilled alcohol is used, then
we must ask: Is it distilled from a gluten-containing grain such
as wheat? If the answer to all three of these questions is "yes",
then the flavoring/coloring may contain some gluten.
This becomes very complex. I would not state in absolute terms
that everything with annatto coloring or natural flavorings and
colorings should be ruled out. I've checked with the local FDA
office and the FDA office in Washington, and I am waiting for
information from them. In the meantime, I am not going eliminate
everything with annatto in it, because I don't have the evidence
that says I must. It is so pervasive, and I have no evidence of
people having a problem with it. That is a personal decision I am
making; if you feel you should eliminate annatto coloring you may
of course do so.
Q: Is there a problem with mono- and di-glycerides?
Dorothy Vaughan: Mono- and di-glycerides are a fat derivative.
Dr. Alexander: There was a lot written in the earlier sprue
literature about mono- and di-glycerides, and it has really
confused a lot of people. There really is no relationship between
glycerides and CD. Another misconception applies to glutamate;
this has nothing to do with CD either. I went back to 1966 in the
computer database, which covers about 3500 medical journals, and I
could not find a single article to support any claim of a
connection between glutamate and CD.
Jim Lyles: In the talk in Baltimore which mentioned glycerides, there
was talk of a wheat carrier being added in and then later
extracted during the processing of mono- and di-glycerides. The
concern is that the extraction of the wheat carrier might be less
than 100%.
Q: What is the treatment for a celiac with osteoporosis?
Dr. Alexander: It is the same as for anyone else, as long as your CD
is under control. This is another benefit of a follow-up biopsy;
it confirms that things have returned to normal, or are at least
close to normal.
Once you've gotten CD under control, then you should follow
whatever the current treatment is for osteoporosis. This is
particularly important for post-menopausal celiac women, as their
absorption of calcium might be somewhat less than the average
women. It may not be enough to show up on a blood test, but still
be enough to leach calcium out of the bones.
Q: I am getting allergy injections. Is there anything I need to be
concerned about regarding the extracts used in the injections?
Should I tell my doctor that I can't have any gluten in my
extracts?
Dr. Alexander: The allergens they are injecting shouldn't contain any
gluten or affect your CD. You can let your allergist know about
your CD, but I don't think you have much to be concerned about.
The allergens they used are very purified and unlikely to contain
gluten.
Q: I've suddenly started losing my hair about three weeks ago. I
started the GF diet about two months ago, and I am feeling better.
Is the hair loss related to CD?
Dr. Alexander: Severe nutritional deficiency can cause hair loss,
skin problems, stomatitis, etc. However, I wouldn't expect the
hair loss to begin months after a GF diet is started since by that
time nutrition should be improving..
Q: In a previous issue of _The Sprue-nik Press_, you listed someone
we could call for pharmaceutical ingredient information. I've
used this number and found the man to be most helpful. Should I
continue using this or use the pharmaceutical list that this group
has provided to contact the individual pharmaceutical company?
[Editor's note: This refers to John Tilelli, a pharmacist at
Hudson Bay Point Hospital in Florida. Call 7:30-4 EST, weekdays,
at (813) 869-5400, ext. 2615. This information originally came
from _The Celiac ActionLine_, and was reprinted in _The Sprue-nik
Press_, April 1995]
Mary Guerriero: I recommend calling the pharmaceutical company
directly, if you can. When you call, don't ask if the medication
is gluten-free as answering yes opens them to liability. Instead,
ask them for the source of suspect ingredients such as starch in
the medication; in other word find out which grain the suspect
ingredients were derived from. For extracts, flavorings, etc.,
find out if a grain alcohol was used to extract the ingredients,
and if so, which grain the alcohol came from. I have gotten
absolutely wonderful responses from the companies with this
approach.
The only problem with the source in Florida is you have to find
out how up-to-date the information is. How often is it updated?
[Editor's note: According to _The Celiac ActionLine_, it is
updated monthly.]
Jim Lyles: If you want to be on the safe side, you could call the
pharmaceutical company and if you don't think you got a good
answer you could also call the source in Florida. If either one
says the medication is not GF, then you could avoid it.
Dr. Alexander: Anne Laginess, a pharmacist at Henry Ford Hospital,
spoke to our group in 1994. She reviewed a number of medications
and checked with pharmaceutical manufacturers to see if there is
any gluten in these products. She found that most medications are
GF. Later, an article in one of the major medical journals
reported on a study in which a number of medications where
subjected to a gluten-detection test. According to this test,
most of the medications did contain gluten. Did gluten get into
these products somehow, or were the tests not valid? I suspect
the latter.
If you are on a medication that you need to take continually, such
as for high blood pressure or a heart condition, it is a good idea
to double-check with the manufacturer. If you are on an
antibiotic (for example) for a couple of weeks, it probably won't
make that much difference for you.
Dorothy Vaughan: It is probably a good idea to contact the
manufacturer to make them aware of the concerns we have as
celiacs. That way they'll hear from a number of us, instead of
just a few.
Q: My gastroenterologist has never done any repeat blood work or a
follow-up biopsy since the original diagnosis. In fact, I've
never had the antibody blood work at all. He says since I feel
good, it isn't necessary. What can I do to persuade him to do
some follow-up testing?
Dr. Alexander: It is generally accepted as standard procedure to do
a follow-up biopsy. To convince your doctor that he is not
following standard procedure, you need to get a review article
from a major journal, written by someone with national
recognition, and give it to him to back up what you are saying.
If this offends your doctor, well, that's his problem.
Q: In Canada, vinegar distilled from gluten grains is considered GF,
because gluten doesn't get transferred through the distillation
process. In the USA, grain vinegar is generally not considered
GF. Is there any research going on to establish this one way or
the other?
Dorothy Vaughan: Most of the current literature advises celiacs to
avoid grain-distilled vinegar, and we do have other choices. I
don't know of anyone currently researching this question.
Keep in mind there is a difference between a laboratory
distillation and the food processing of a manufacturer. There
could be contamination from flour dust in the air, etc.
Q: Is there a genetic factor associated with CD?
Dr. Alexander: Yes, there is. Among first degree relatives of a
celiac (siblings, parents, and children) there is a 2-5% incidence
of CD. In studies where you see a 10-20% incidence there is
usually an inherent bias in the study (not intentional). For
example, in one study they looked at all the first-degree
relatives of celiac patients that were willing to participate.
Now if you are feeling fine, do you really want to go in for some
blood test that might prove you have some weird disease that means
you can't eat bread and pasta? So this study probably got mostly
the relatives that weren't feeling good, and amongst them they
found that 10% had CD (surprise, surprise).
In identical twins, reared together, in only about 70% of the
cases do both twins have CD. In the other 30%, one twin has CD
and one does not. How can we explain this? Even in identical
twins there can be some crossover in the chromosomes which makes
them not identical genetically.
Q: Is there a relationship between stress, Irritable Bowel Syndrome,
and CD?
Dr. Alexander: Irritable Bowel Syndrome (IBS) is a disease which
mimics CD in many ways. There are some doctors that believe IBS
is a bunch of baloney, but it truly is not. There are a lot of
pathophysiological changes that occur in the gut during IBS. One
of the most predominant triggering factors for IBS is stress. Now
let's suppose you have CD. You are carefully following the GF
diet and feeling great, but you still have these bouts of
diarrhea. So you wonder if somehow you are still getting gluten.
Well, it is probably IBS. IBS is the number one cause of diarrhea
that gastroenterologists see. It is possible to have both CD and
IBS.
A number of celiacs are initially misdiagnosed with IBS. I think
a physician has to be careful to take into consideration a number
of possible diseases, and not just the obvious one.
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