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Summary of my original post:
CD friend is taking less over the counter pain medication and has cut
out Synthroid (as per her doctors instructions) ... She has severe
iching/burning pain which runs down the inside and outside of her legs
and arms. .. She says it itches/burns but if she scratches it then it
BURNS/hurts....   Help
~~~~~~~~~~~~
1 person thought it might be gluten exposure, but don't think it is. Her
gluten symptoms are much different.
~~~~~~~~~~~~
4 people wonder why she is off her Synthroid. -- I guess I'm sorry I
said anything about synthroid because I don't know the entire situation.
Apparently her thyroid conditions are atypical. Her doctor had her
eliminate her Synthroid due to the monitoring they are doing. They are
keeping a close eye on this to see if the situation changes. They
realize that going GF does not indicate one should eliminate Synthroid.
But, apparently for her, going GF has enabled her body to take in
whatever nutrients it needed in order to make more thyroid. However, for
those of you who are still worried about her, I found out that she is
taking a small dose of a different thyroid replacement.
...
I've noticed that a sizable number of people with celiac also have
Hashimoto's hypothyroiditis, an autoimmune hypothyroid condition. This
is a condition in which the patient produces thyroid hormone, but also
produces antibodies to it, and _must_ take exogenous thyroid such as
Synthroid, Levothroid, etc. to have a sufficient supply. Some of what
she's experiencing could be low thyroid--certainly the description
sounds like one of the symptoms I felt.
...
I have been told Synthroid is for life, so I am wondering why she is now
off of it.  I also wonder too if the pain is somehow trigger by thyroid
issues (for myself).  If she is not already, she should be seeing and
endocrinologist for the thyroid disease.
~~~~~~~~~~~~~~~~~
3 people identified the pain as peripheral neuropathy.
...
Burning pain is the symptom of peripheral neuropathy.  B vitamins,
particularly thiamin (B1) is generally useful.  One food that has a lot
of thiamine is pork.  I added about 2 oz. of pork chop to my diet every
other day or so, and a lot of the burning is gone.  There isn't much
medicine that deals with peripheral neuropathy, and many medicines that
might deal with it tend to be toxic to other areas.
~~~~~~~~~~~~~~~~~
B vitamin related:
...
The sensation that I get that signals me that my B12 is low is this -
it's a feeling as if someone has poured warm (not hot burning) liquid on
my legs or arms. In fact, when it first started happening again a year
ago (hadn't felt that feeling in nearly 7 years), I actually looked down
to see if something spilled on me. It doesn't burn or itch and I'm not
exactly sure what is going on or how it relates to B12. ... When it
occurred again a year ago, I asked the doctor to run a B12 level and
sure enough, it was low.
...
I'm guessing you will find low B's as the answer to the problem, but not
necessarily B-12. I think it might be pantothenic acid or riboflavin.
Remember you must take a b-complex in addition to supplementing any b
vitamin. If you stick with it for a least a month or more I think you'll
begin to see improvement. Remember the stomach (intestine) is still
healing, and as such, is still not taking in all of the nutrients. Also,
we tend to think of all pills like antibiotics or pain relievers, we
think they should work immediately! Vitamins show results after a period
of time.
...
When you stop wheat flour products it means you lose the B vitamins
which are normally included with them. (The "enrichment" in enriched
flour) Take a B vitamin supplement to offset this reduction in nutrients.
...
I don't know if this is related to low B12 but it certainly could be.
She could get her B12 level tested. Be sure to get the results. Don't
accept "normal" as an answer. Please read "Vitamin B12 Deficiency" at
http://www.aafp.org/afp/20030301/979.html for proper testing and
interpretation of results.

The other choice would be to start taking B12. It is not toxic and is
safe to take. The usual dosage is 1000mcg each day. Cyanocobalamin is
easily found. Methylcobalamin is a form that is more easily utilized by
the body. I buy mine from iherb.com

The best advice I have seen on Be 12 is at MGH forums at
www.braintalk.org Go to the peripheral neuropathy forum and look for
posts by Rose.
~~~~~~~~~~~~~~~~~~~~~~
Suggestions of what to do for the pain:
...
I take B-12 for it. On really bad nights I use Ambesol (yes the
toothache stuff) or Calagel (for poison oak/ivy) to kill the burning
sensation.
...
Try large doses of trace minerals and B vitamins. I mean very large mega
doses, may be 100 times recommended. I'm a nurse who used to work for an
doctor who practices nutritional medicine and gets great results for his
patients with trace minerals and B vitamins. For trace minerals, she
might try one of those liquid vitamin supplements made by Phoenix
Nutritionals. I would also try some sort of adrenal support product also
made by Pheonix nutritionals called STRESS EZE. Adrenal fatigue could
cause her skin to be extra sensitive. For the burning muscles, I might
try increasing salt intake
...
she should take calcium supplements and B-complex
she should avoid dryer sheets
...
I have been GF for about 2 1/2 years and now just getting back some of
my muscle strength and minimizing pain.

I used Neurontin and that helped tremendously at reducing the pain, but
it never actually went away completely.  I also went through physical
and occupational therapy. PT for muscle weakness and stability training.
OT for desensitization so skin could tolerate more touch and ways to
learn to do things a bit differently so they hurt less.

I also used Chiropractic and cranial sacrial (?sp) therapy for pain
reduction--they helped tremendously and I am now finally off the
neurontin and only using a presc anti-inflammatory for
general/nonspecific inflammation.

~~~~~~~~~~~~~~~~~~~~~~
Once again, thank you all (I'm from Oklahoma, I can say that) for all
your help.
Deborah Martin

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