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Hi everyone,

I enjoy reading your posts.

I was adopted when I was 9 days old (I'm 32 now).  I was extremely sick as an
infant, so my parents took me from doctor to doctor and none of them could
tell my parents what was wrong with me (sleeping 20-22 hours a day, distended
stomach, sallow, dark circles, skinny arms and legs -- your classic case of
malnutrition).

At around 18 months I was diagnosed via jejunal (sp?) biopsy with celiac
sprue by a doctor who then (1968), I suppose, was ahead of his time.
Needless to say my folks were happy to have someone listen to them and to get
me on a GF diet.  The adoption was not final and social workers came
regularly to visit -- my mom tells me she was so afraid they were going to
take me away from them because I was so sickly.  Good news was that the diet
worked and I was happy and racing around like a normal toddler within a few
months.  Adoption came through and I couldn't have been placed with a better
family.

My Mom kept me on a gluten-free diet for years and at some point took me off
the diet - say around age 3 or 4 - because the doctors told her I could/would
"go into remission."  I suspect from reading your posts that there is no such
thing as remission with celiac.  I did okay off the diet (happy as a
clam...no more "banana-a-day" and no more PB&J on rice cakes -- yuk!)

Then at some point she had me back on a gluten free diet - say age 5 or 6 --
I'm not sure why.  We moved, and perhaps I became symptomatic - don't recall.
 At some point again I went off the diet -- maybe around age 10 -- again,
because I was supposedly in "remission" according to either my Mom or my
pediatrician.

To this day I am rather a-symptomatic, meaning that I am not perfectly
regular or like clockwork, but by and large do not have any of the dreadful
symptoms about which I read in this forum.  In fact, I think I'm like just
about everyone else, although it's not something you really discuss with
people!

My question is this -- do I need to be retested and get a bone density test
or do anything else? If so where do I go?  Do I need to see my primary care
physician and get a referral to a GI specialist?  Do I need to be gluten
free? That sounds so unappealing -- but so does the thought of dying from
lymphoma at a young age.  I have a 1 1/2 year old son and cannot imagine not
watching him at least through his mid-life crisis! :)  We also want to have
more children.

Any suggestions, thoughts or your support would be greatly appreciated.
Sincerely,
Victoria