<<Disclaimer:  Verify this information before applying it to your situation.>>
 
My 10 year old daughter is undiagnosed but we are sure it is celiac disease.
 She has classic symptoms of bloating, gas, foul splattering diahrea,
distended belly since age of 2.  We tried to remove wheat from her diet when
she was 8 and she improved immediately.  Then the rigors of the diet made us
lose heart and she began eating like the rest of us again...needless to say,
in about 3 months we were right back where we had started with all the
symptoms.  Finally, this summer she was getting ready for a ballet recital
and just couldn't face it with all the diahrea, etc., so we went wheat-free
again--and guess what?--her symptoms are all gone!  (She tried to eat Spelt
but had a nasty bout of the runs that night, so I believe it is actually
Gluten that is her problem.)
 
She has decided on her own that if this makes her well, it is worth the price
she pays!  (I'm proud of her :))
 
My dilema comes as I read thru the posts here, and I see a few really good
reasons for getting her tested, like what if she went to the hospital, etc.
 If I wanted her tested she would have to go back on wheat-et al- and for
some time--at least enough to give reactions.  This would really be
unbearable for her.  She is a very sweet, shy, short for her age, thin,
delicate-of-heart child.  All the gasiness and stuff really made life so hard
for her.  But if she has been GF for a while, she will have ok looking villi,
and maybe no reaction in the blood test?  Also, if she were to go on a gluten
containing diet, she would be putting herself at risk for cancer if she is
truely celiac.
 
I am considering having myself tested (blood) first to see if I have it, not
that I have these symptoms, but if it is genetic in nature, wouldn't I have
some positive test?  We do have family members who have allergy to wheat and
milk.
 
Along that line, my next child seems to be borderline ADD with milk allergy.
 Then the next one gets these bumps on her skin that resemble what you have
described as DH.  I had seen these on the 10 year old when she was still in
diapers, but thought it was a mild case of chicken pox till they didn't go
away like them.She only got them 2 or 3 times in her life, whereas the 4 year
old gets them ALL the time.  She has made her legs look terrible from the
scratching.  Nothing helps.  When I took her to our Pediatritian/Allergist he
said "looks like she is allergic to something.."  No help. She gets patches
of them on her arms, legs, back neck, face, buttocks, and even on chest
sometimes.  I guess what I am saying is that I think we all have some form of
reaction to gluten, but we have not been tested.
 
What should I do?  We don't have insurance, so we pay at the time of
service--what has your experience been with the cost of testing?
 
Is there any specific type of Doctor one should seek out?
 
Any advice will be greatly appreciated...TIA
Betsy