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Dear List Friends,

Thank you so much for all of your kind responses (27 total) to my question
regarding skin pain.  It's hard to describe to someone the intense pain that
is being experienced
while there is absolutely nothing to see--no redness, no rash, etc.  All of
your comments were so helpful.  I am not a diagnosed Celiac, just extremely
gluten intolerant. (Celiac in the
family.)  I have been GF for 14 months and the incidents of the skin pain
seemed to be getting less frequent, but then this last week came back in
the worst way.  I think the suggestions about consulting a nutritionist are
very helpful, and all of your comments were very insightful.  I hope that
those interested in the summary will find the comments helpful and
that those who experience similar symptoms will be encouraged that you are
not the only one in the world with this 'invisible' pain.

I have included most of the responses and left out repetitive comments.

Sincerely,
Loretta


CAUSED BY VITAMIN B DEFICIENCY OR OTHER MALABSORPTION:

I have had similar pain when I was B vitamin deficient. My arm or leg will
hurt to have clothing touch it.  For the record, I do not have CD, but my
husband does.

My daughter has this in more extreme form.  Her feet, legs, hands etc are
super sensitive to fabrics.  She can't really describe the pain, but she
cries about it a lot when getting dressed.  She is only 8.  I've heard it's
related to the malnutrition due to cd, and possible nerve damage.  She was
only diagnosed 3 months ago and is just getting started on supplements.  We
hope it gets better as she begins to absorb more nutrients. When I got back
her nutritional report from lab, several of the enzymes, vitamins she was
lacking showed feet, hand, leg pain as a symptom of deficiency.  I wish I
knew more, and wish you luck.

I was diagnosed with CD about 2 yrs ago.  Talk with a intuitionalist.
Perhaps this is a nerve degeneration problem that can be helped with B
vitamins.  The sheath that fits over the end of our nerve endings is made up
of B6 like a sock on a foot.  Are you under a lot of stress?  This
mal-absorption thing we have requires extra nutritional supplements.

PERIPHERAL NEUROPATHY OR OTHER NERVE DEGENERATION:

Your pain sounds like some kind of peripheral neuropathy common to some
coeliacs.  I have had this quite recently but only very localised, usually
on a small part of my left hand below the thumb and first finger.  It has
never yet been bad enough to take medication and I forget about it between
'bouts'. As you describe it's like a burn and exquisitely sensitive to
touch. My coeliac mother gets peripheral neuropathy and I have wondered if
this is some minor related form.  I am 49, CD diagnosed 5 years ago, with
negligible symptoms. Looking back I  recall having this pain in the past on
other small areas of the body, often my back.  It's very like the pain
before shingles appears - which I have had mildly twice, the last time just
prior to diagnosis. It's very rare to have shingles more than once but then
coeliacs have such odd immune systems. If I got this pain again on my
abdomen I would possibly suspect it to be a precursor of shingles and ask
for prophylactic anti-viral medication.

Sounds like it might be peripheral neuropathy (PN), which means that the
nerve endings are mis-firing.  I get that with another condition that I
have.  Check with a nutritionist to see if your vitamins and micronutrients
are right.  I know that B complex plays a part, as does other things.  The
longer that you are gf the better.  Long-term undiagnosed CD causes a
malabsorption problem which means that we are malnourished even though we
might eat a balanced meal.  This is what happened to me.  I had CD from
birth, but did not discover it until I was 47 years ( I am now 55).  As far
as I know, PN is not treatable with drugs.  AMA usually refers people to a
pain clinic.  I choose alternative treatments as AMA doesn't have many
answers and a lot of their suggestions can be toxic.

You might want to check and see if you have peripheral neuropathy.  I do,
from Sjogren's syndrome, another autoimmune disease that sometimes pairs
with celiac.  There are times when the skin on my arm feels cold like I laid
my arm in a puddle on the table.  It feels like I have a wet sleeve chilling
the underside of my arm.  It can happen on either arm but hasn't ever
happened on both at the same time.  I haven't felt actual skin pain, but
cold and pain are both sensory and therefore neurological.  There might be a
link.

I have had a pain like that on my right ankle for many years. I just figured
it was some kind of nerve pain, as sometimes it feels hot, sometimes cold.
But it doesn't bother me all the time, so I don't worry about it. And, my
pain doesn't travel.

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