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Hi all -
As you may have gathered on this list, some folks get better when they 
stick to the GF diet and others don't.  Our daughter (diagnosed at 11, 
currently 14) was one of the unlucky ones who didn't.

She has had unrelenting and increasingly painful headaches, stomach 
aches, nausea, neck pain, back pain, muscle pain, sinus pain...  we 
have taken her to rheumatoid doctors, osteopaths, gastroenterologists, 
ear nose and throat specialists, naturopaths, osteopathic surgeons, 
podiatrists, as well as so many visits to the pediatrician that we 
should qualify for a group rate!

They all run their tests (blood, ultrasounds, xrays, MRIs, catscans), 
get back normal results,  shrug and can't explain it, with a few 
intimating that she is making it up for attention.

Yesterday we saw a new gastroenterologist.  He suggested to us that her 
problem is not celiac, which seems to be well controlled by her diet 
(the blood tests, which before indicated gluten consumption and celiac, 
indicate that her current gluten consumption is nil).  He said he 
thinks she has Visceral Pain Associated Disability Syndrome (VPADS), 
which means that for some reason, when anything that hurts her (a cut, 
a gluten reaction, a sinus infection, etc.), the pain lasts long after 
the reason for the pain is gone.  He said that fibromyalgia was 
definitely part of the picture (the rheumatoid doctor also said she had 
fibromyalgia), but that it went well beyond that.  Her pain is 
functional pain rather than pain associated with a disease -- he 
acknowledged that it was real and said that it affects many people who 
are on disability because they can't work (our daughter has missed 
about 50% of her school days this year, so we can understand how it 
could be a work disability).

Does anyone know about this condition, whether it is common for folks 
with celiac, and what can be done about it?  At present, we are going 
to try to find someone who specializes in pain management (the 
gastroenterologist suggested a child psychiatrist), as that seems to be 
the only way to live with this as there doesn't seem to be a cure.

Thanks.

Jackie in AZ

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