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Sorry this is so late, I have not had time to summarize until now.  I got a
large number of responses (about 40) and was able to share them with my son
which was really important for the two of us.  The responses were wonderful
and helpful, with many from all over the country and even around the world
taking the time to consider our issues so thoughtfully and to share related
experiences.  I think I sent messages to everyone thanking them, but if I
missed someone, I apologize.  So heartfelt thanks so much to all who
responded- it is wonderful to have these resources out there.

Many people clarified that they do not necessarily have immediate reactions
(or any reactions) to infrequent slips ups so that really helped us
understand that there are a wide variety of reactions to gluten among even
those diagnosed with celiac.  Many emphasized that it does take a long time
to heal and become completely gluten free and some of my son's symptoms may
just be that he needs more time.  I got conflicting advice on the medical
attention issue, some thought that I should keep trying to get him to see a
doctor to be fully evaluated and tested, and especially to see if there has
been permanent damage or related conditions as often there are other
conditions also present.  Others thought since it sounded like he is
complying very well and is informed of the consequences of slip ups that we
are lucky that he is motivated to comply.  They pointed out that if he were
to seek evaluation his tests may be negative or unclear anyway since he has
been basically gluten free for a year now so it might not really change
anything for him.  (And I know he is not up for a gluten challenge.)
Several shared heartbreaking stories of their own with similar issues with
grown children (often in families with other celiacs) who ignore advice and
won't face up to the problem.  Others said their personal experience was
just like ours, having been diagnosed in some fashion as babies or kids,
then thinking they had "grown" out of it until their 20s or 30s when they
started to have symptoms again.  Several thought the vomiting problem might
be related to lactose intolerance, others reported that they as celiacs
often experienced vomiting.  (It did turn out that he had eaten some sour
cream and he now thinks the vomiting was related to that- he hasn't had any
episodes of that since.)  Others had really sad but inspiring stories of not
being diagnosed for so many years and now are coping with many serious
health conditions. Others have been recently diagnosed and are doing well
with this problem and feel they have a new lease on life. Some gave us a
litany of the terrible consequences of not staying gluten free (increased
risk of lymphoma etc) and suggested that it might help to share that with my
son to remind him that he has to stay vigilant.  (I did and it did have an
effect!).  It was really useful to hear of the tremendous variations there
are in this condition, we did not really understand that before all of these
kind people took the time to communicate.  But of course the one thing all
had in common was stressing that everyone with this conditions must stay
absolutely gluten free for life.

Other useful comments included:

Consider testing for Chron's Disease, symptoms can be similar to celiac
Recommend gene test (especially since he is already gluten free)
Recommend stool test and lactose intolerance tests
Blood tests were mentioned by several (HLA/DQ bloodtyping) particularly Dr.
Fine's
Some recommended dietary supplements, I-glutamine 500 and Probiotics with
every meal to help with healing.
A number of web sites were recommended including:
www.clanthompson.com <http://www.clanthompson.com>  (for good lists of
products)
www.foodallergy.com <http://www.foodallergy.com>
www.finerhealth.com <http://www.finerhealth.com>   (stool testing info)
A doctor in Delavan WI, Dr John Hicks (262-740-3000) at Pathways Medical
Advocates was recommended
And I also heard from the President of CSA/USA!

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