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From:
Robert Dickinson <[log in to unmask]>
Date:
Fri, 13 Oct 2000 13:05:20 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hello, James Young (http://maelstrom.stjohns.edu/CGI/wa.exe?
A2=ind0009D&Liliac&P=R180) recently presented a summary of responses he
received about neuropathy and celiac disease (CD).  I noticed that
pellagra, a deficiency of niacin, was not mentioned.  Because I have had
excellent success at relieving an apparent severe neuropathic pain in my
left foot with niacin, my experience with this apparent peripheral
neuropathy and niacin might be of interest to those with CD and to those
whose neuropathy remains undiagnosed and treated.

Pellagra is not usually mentioned as related to CD, but vitamin
deficiency is apparently a common celiac problem.  Pellagra is a known
cause of peripheral neuropathy (http://www.medscape.com/medscape/
PhysicianAsst/AskExperts/2000/09/PA- ae17.html) and peripheral
neuropathy is known to be a symptom of CD
(http://www.celiac.com/frequent.html#symptoms).  A good discussion of
pellagra and niacin can be found at http://www.bookman.com.au/vitamins/
niacin.html, though the article does not mention CD.

Carol Lydick (http://maelstrom.stjohns.edu/CGI/wa.exe?
A2=ind9903C&L=celiac&P=R186)
quoted the following about pellagra from a
Dr. William Kaufman MD. PhD. in a Time Life book:

"When I began practicing medicine in 1941, before the compulsory enrichment
of cereal products, I realized that there was----- ---Patient after patient
coming in with a group of symptoms which were quite similar----such as
inability to concentrate, depression, irritability, joint complaints,
excessive fatigue, bloating and intestinal complaints -----Very soon I
recognized that this strange syndrome was probably a form of pellagra that
had not yet reached to degree of severity to cause the classic combination
of skin rash, diarrhea and dementia (schizophrenia type symptoms), that is
typical of niacin deficiency"

Many of these complaints seem to be common CD symptoms and I wondered if
some that I have experienced, particularly bone pain, could be related to
niacin deficiency.  I was diagnosed with CD about 1932 after becoming a
banana baby.  Though it was thought that I was cured, I continued over the
years to have many of what I now know are CD related symptoms.  I gradually
resolved these over several years by going gluten free.  By the time I got
Internet service and learned the true nature of CD I had been gluten free
for some time and blood tests and a biopsy were negative.  The physicians I
have had over the years seemed to believe the only symptom of CD is
diarrhea and since I did not have diarrhea I was told that I did not have
CD.  As recently as 2 years ago one physician asserted that blood tests
were not available for CD.

About 2 years ago I had to stop taking my gluten-free daily multi-vitamin
because the bottle stated that it should not be taken with an antibiotic
being prescribed by my primary care physician for an infection.  A pain
that I had suffered in my left foot for many years suddenly got worse.  It
appeared that something in the vitamin pill had been moderating the pain.
After reading the above on pellagra I suspected niacin.  On taking a
supplemental dose of niacin the pain quickly subsided and is now gone when
I take a self-prescribed dose of niacin.

I have found by trial and error that by taking one Nature's Life One Daily
Multiple at breakfast plus 25 mg of niacin for lunch, dinner, and before
bed (I split a 100 mg table of Nature's Life niacin) that I can completely
relieve the pain.  If my foot starts to hurt I invariably find that I have
forgotten a dose.  I recently tried to switch to Centrum Silver for the
vitamin pill and the pain quickly returned so I have gone back to Nature's
Life.  I also experienced fatigue with the Centrum that resembled past CD
related fatigue.  I have no financial interest in either Centrum or
Nature's Life.

A podiatrist had previously diagnosed the pain in my left foot as a
Morton's Neuroma, a benign tumor of a nerve running between the second and
third metatarsal in my left foot.  He gave me a cortisone shot, which
relieved the pain for a few days.  After the pain returned he stated it was
caused by arthritis.   The only relief that he offered after two more
cortisone shots in the joints was a Tylenol or nonsteroidal anti-
inflammatory drug.  I am no longer able to take these so was left with pain
that made it difficult to walk.

Because the podiatrist had insisted that the pain that remained after he
treated the Morton's Neuroma was arthritis, I at first assumed the niacin
was relieving arthritic pain in my foot.  However, I noticed that the
niacin did not relieve other occasional joint pains not relieved by
glucosamine and chondoritin.  The glucosamine appeared to partly relieve
the foot pain.  This suggested to me that the pain was probably not from
arthritis.  Incidentally the glucosamine has mostly relieved pinched nerves
in my neck by improving my neck joints.

After my wife recently developed peripheral neuropathy in her feet (she has
tested positive for CD in blood tests and negative by biopsy), we learned
her pain is caused by nerves.  I then realized the pain in my left foot
that is being relieved by niacin is probably nerve pain and not arthritis.
The pain includes characteristic burning associated with peripheral
neuropathy, but which does not occur elsewhere with my arthritis pains.  I
had told the podiatrist that the pain still seemed to be at the site of the
nerve, but he insisted he could feel that it was in the joint.  Gradually
over several months the nerve is no longer sensitive to touch and appears
to have gradually healed.

The fact that my nerve pain is relieved by 125 mg of niacin indicates to me
that I have a daily niacin deficiency that exceeds the USA RDA of 16 mg.
Because the pain was present before and after I went gluten free a direct
connection to CD cannot be made.  However, a gastroenterologist told me
that vitamin deficiencies are common in CD patients even after they are
gluten free and test negative for CD.

I have found that I am also deficient in zinc.  For many years I have had
white fuzzy spots on my fingernails.  These spots have been reported as a
CD symptom, but my physicians repeatedly told me they were caused by
trauma.  By trial and error I have found that I can eliminate these spots
by taking 35 mg of zinc (RDA 15 mg) divided into four daily doses.  If I
miss a dose a spot will shortly appear.  This increase in zinc appears to
have also helped to improve my immune system.

The above indicates to me that I have at least two vitamin deficiencies
that exceed the RDA which need to be treated by more that a single daily
dose.  The niacin relieves apparent nerve pain that seems to be a form
of peripheral neuropathy.  An interaction of niacin and zinc metabolism
occurs in patients with alcoholic pellagra
(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?
cmd=Retrieve&db=PubMed&list_uids%26999&dopt=Abstract).  This suggests to
me there may also be an interaction in pellagra as it relates to
patients with CD.

Perhaps the above will encourage others with unresolved CD problems and
peripheral neuropathy to consider supplemental doses of niacin and perhaps
other vitamins.  Some pellagra related symptoms may reflect the fact that
many gluten-free foods are not enriched in niacin.

I presume one should check with a physician before taking vitamins in
excess of the RDA; however, my efforts have not fruitful.  Therefore, I
researched both niacin and zinc to be sure there should be no ill effects
at the dosage I am taking.  Certainly the exact vitamin supplement regime
which has helped me may not help others, but perhaps the process through
which I have found relief may offer guidance.  On the basis of my
experience it is unlikely that one can expect to get much help from the
average physician.

Bob Dickinson

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