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FINAL SUMMARY RESPONSE on CD, GSE, & transient intolerance

I received 11 responses, three of which merely asked for this summary, and an
extensive response from Bill Elkus, who asked Karoly Horvath, M.D. Ph.D. of
the University of Maryland to respond. I join Bill in expressing immense
gratitude to Dr. Horvath for his helpful (and extensive) research on our
behalf.  His entire response can be found at the end of this summary.

Dr. Horvath identified five cases of transient gluten intolerance when doing
research between 1977 and 1987 for his Ph.D. thesis. All were children, who
were diagnosed by positive biopsy, treated with GF diet for at least one year,
followed by one year on a normal diet. Repeat biopsies after two or more years
proved negative.

Dr. Horvath listed 16 published references.  They had in common a limited
number of cases of transient gluten intolerance, all found in children. Some
references were focused on criteria for diagnosis of transient gluten
intolerance.  Bill Elkus summarized by saying it is very rare and much less
common than Celiac Disease.

One person knows someone who has been diagnosed with both CD and wheat
allergy; and believes the allergy does not cause villi damage.  Another person
endured the allergy testing (lots of skin pricks, applications of potential
allergens) and tested positive for wheat allergy, along with other foods; then
found headaches, sinus congestion, nails and energy improved on a wheat-free
diet. A third person also said you can be allergic and have CD, but the villi
damage comes from the CD, not the allergy.

Five responses addressed the resistance of physicians to order appropriate
tests. Everyone agreed that physicians don't know enough about CD, and two
know or are related to current med school students who report learning a lot
about CD in their classes.  Three advised searching for the right doctor or
educating a doctor to get more comprehensive tests.  One found that
assertiveness counts with HMO physicians.  Two indicated they had no problem
getting the tests, but added they have done a lot to educate their physicians.
Three reported disappointing experiences because doctors did not order the
proper tests before they started the GF diet.  One person pointed out the
effectiveness of this list in educating ourselves and one another.

Two mentioned how little money there is in treating CD, since drug companies
are not involved. (Many other diseases which can be treated by drugs get lots
more attention due to research funding available via drug company sponsors.)

Thanks very much to everyone who responded.  Following is the full text of Dr.
Horvath's response:
     [This information is in a post made to the list on March]
     [7, 1998.  It is located in the LOG9803A archive file.  ]