<<Disclaimer: Verify this information before applying it to your situation.>>

     Back in January, I requested information on what follow-up care I
     should ask for or consider after having been diagnosed 15+ years ago
     and not having any health problems currently.

     Several people requested I summarize what I learned.  The process has
     been slow with the medical world and my life is often too
     over-committed to find time for email.

     Thanks for your patience.


     Here's what y'all shared with me:

     Sue Goldstein:

     She forwarded me a copy of Dr. Peter Green's talk on follow-up care
     from September 29, 1996 that she had summarized. (This is four pages
     long so I did not include it.)


     Thea:

     Did not have good luck with the Kaiser Permanente group in Oregon, but
     she felt it depends on the doctors themselves.

     Colleen Kavanugh (also 29 yrs old):

     Recommends the bone density test as she found herself 1.5 standard
     deviations below the mean.  Or test calcium through a 24 hour urine
     test.  Also, to check my Vitamin B12 level.

     Kerstin from Atlanta (25 yrs old):

     Shared her concern for osteoporosis or something similar

     Michele from Germantown, MD (in my area):

     She had good luck with Kaiser in this area although they were slow to
     come around with a diagnosis.  She got a referral to a specialist  for
     a biopsy for her son.  She told me Kaiser would do the blood work
     (antibody tests).  She reminded me of the need to educate the doctors
     and came prepared with FAQ file and others available from the
     listserv.  She also told me there nutritionist really cannot help out
     at all.  For her, the list has been her best medical advice and her
     life saver.


     *******

     Along with these recommendations, I had been gathering the medical
     referencing posts from the past few months.  I am already biopsy
     diagnosed, but took Don Wiss' post of the 'Top 20 Diagnoses before a
     diagnosis of Celiac Disease' just in case (Posted 1/27/97).  I also
     took with me a copy of the survey I completed for Columbia-Pres
     Hospital in NYC since it was a good overall summary to a doctor that
     doesn't know my history.

     My experience:
     1. First, I had to see Internal Medicine as a 'Physical' to get the
     referred to the GI.  (It had been three years since my last physical,
     so I didn't want to go around it.)  That DR saw my file of notes and
     posts and quickly glanced through them in his office to return with a
     referral to GI.  (It took three weeks to get an available appointment
     for the physical).

     2. It took another four weeks to get an appointment with the GI, whom
     I was told by the appointment nurse that this DR already had some
     Celiac patients.  I returned for an initial consultation with my file
     of notes and posts.  Most of the time was spent sharing my history.
     He was impressed with my schedule and travel history (I lived
     successfully GF traveling 75+% of my time for 4.5 years).  He agreed I
     fit into the young and super healthy group (Great news to hear).  He
     didn't recommend the bone density test for those under age 40.  Told
     me that the biopsy was really the 'best' way to know how things are
     going, but since I wasn't having any problems (and I am not warm to
     the idea from a bad experience the first time).

     He gave me the antibody blood test series to establish a baseline with
     him and wants me to visit for a blood test series once per year and to
     see the nutritionist.  (I think he wants me to teach her a thing or
     two.  That appointment took five weeks to get an opening which takes
     me to the end of April.)

     I am personally content with the results, except for the time it has
     taken.  I regularly eat cheese, meat, ice cream and drink milk here
     and there along with taking a calcium supplement twice per week since
     I was diagnosed so the bone density doesn't seem to be necessary to
     me.

     I was also surprised to learn that this GI is already monitoring 8
     others with CD and apparently there are two other GIs in this office
     that have a few patients with CD that they track.


     Hope this is helpful for others who are doing okay but wondering
     whether any follow-up care should be done.

     Thanks for all your help, information and especially the dessert
     recipes.

     Sincerely,

     Chris Villa
     Arlington, VA/Washington, DC