<<Disclaimer:  Verify this information before applying it to your situation.>>
 
Treating CD
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Dr. Murray says that when he tells someone they have CD, and that the
treatment is to avoid wheat, barley, rye, and oats, he expects a
"grief" reaction.  This reaction has some fairly standard stages:
Shock, denial (this lasts a long time for some people), anger, and
then (eventually) acceptance.  The most dangerous of these stages are
denial and anger.  In the denial stage you just deny that this is
really happening to you, or you deny that you are really that
sensitive ("Well, I can get away with a little bit of gluten.").  This
reaction is especially common in men.  In the anger stage you may be
angry at the delay in getting diagnosed, or angry at why you got this
disease ("God, why did you give this to me?"), anger at the food
manufacturers for incomplete ingredient information, or anger at the
difficulties of following the diet.  It is good to channel the anger
to something useful, but eventually you have to get to the acceptance
stage.
 
Professional dietary advice is invaluable--if you can get it.
Dietitians who are interested, knowledgeable, keep up-to-date, and
learn as much from their celiac patients as the patients learn from
them are invaluable, and there are a few.  (Dr. Murray specifically
referred to our own dietitian advisor, Dorothy Vaughan, as one of the
few.)
 
The University of Iowa surveyed members of the Iowa Dietetic
Association, asking how many celiac patients they have, what kind of
information do they provide, do they routinely give information about
support groups, etc.  They found that most of them don't treat celiac
patients, most don't even know what to do because it is so difficult.
Most dietitians get their material from the American Dietetic
Association, and up until several years ago it was woefully
out-of-date.  Dietitians can keep up on fat, cholesterol, and diabetic
information; but it is the celiac information that keeps on changing.
As a professional, it is very challenging for a dietitian to keep up,
especially if you are only counseling one or two celiacs a year.
 
Local and national support groups are important for your immediate
benefit.  You don't have to reinvent the wheel all the time.  Also,
there is strength in numbers to advocate to bigger corporations and
food providers, and perhaps get them to bend a little bit.
 
Nutritional supplementation to correct deficiencies is important.  For
example, if someone is very anemic they need something to correct it.
 
Dr. Murray advocates "champagne, not pessimism"<2>.  Initially the GF
diet may be overwhelming and dominate a celiac's life.  But after a
few years to adjust celiacs should expect to have the attitude that
they are on a healthy diet that is interesting and just happens to be
free of gluten.
 
There are many other aspects of treatment.  A bone density test may be
important.  You may want to screen family members for CD.  Intense
nutritional fluid intervention is sometimes necessary in the really
sick patient.  Consider coexisting malignancy or other disease,
especially in the older patients.
 
Finally, there is the need of follow-up for compliance.  Those that do
well on the diet may need less follow-up.  The doctor doesn't know at
the time of diagnosis just how compliant the patient will be to the GF
diet (though he may have his suspicions).  By setting up a follow-up
appointment six months down the road, you give the patient a goal to
shoot for.
 
Most patients come back for a checkup doing very well.  But Dr.
Murray has had some come back looking terrible.  In some cases he has
had to admit them because they were suicidally depressed, somewhere
between the denial and anger stages.  They obviously needed help.
(Trying to persuade the insurance company to admit them to the
hospital for dietary management is nearly impossible.)
 
Dr. Murray advocates prudence, but not paranoia about what you eat.
Some people do get to the point of paranoia, avoiding things that are
reliably GF.  You need to have a "safe haven", where you can simply
eat without worrying about whether or not the food is GF.  This could
be your home, a celiac friend's house, whatever; someplace where you
can completely relax and not worry about the diet.  Some of the GF
cruises that have been organized provided such a haven for the
duration of the trip.  [So did the CSA Conference--editor]
 
In Iowa they have about 150 people in their support group.  They have
split up into smaller subgroups that meet every two months or so in
somebody's home.  There is no real organization to it, but they know
they can go to that person's home, bring their food, and then relax
and not worry about the food being GF or explaining the diet to
someone.  This provides them with a "relief valve".  You need to be
able to do something like that from time to time.
 
Dr. Murray then spoke on monitoring the GF diet.  Symptoms should go
away when you are following the GF diet.  Deficiency states (such as
iron-deficient anemia) should become corrected.  Dr. Murray asks his
patients, "How many times in the last three months have you put
anything in your mouth that you suspected beforehand contained
gluten?"  He says he can look at them as they answer this and know
whether they have or not.  The last person he asked answered, "well,
maybe twice a week".  This was a shock, and Dr. Murray told the
patient that he really was not on a GF diet.  Then he asks why.  The
answers include:  "I was very hungry"; "I couldn't get anything else
to eat"; "I was traveling".  The advice he tries to give is to think
of these situations before they happen and plan for them.
 
Antigliadin antibody tests can be helpful in monitoring compliance.
How many times do you do them?  Dr. Murray says nobody really has an
answer; but he likes to see them become normal (negative).  A
follow-up biopsy is done occasionally, on a case by case basis.