<<Disclaimer: Verify this information before applying it to your situation.>>

With all this talk about peripheral neuropathy, I just want to mention
something about B12.

B12 is extremely important to central nervous system function. A deficiency
in B12 can erode myelin, the lining of the nerves. Without that lining your
nervous system can't function properly. The central nervous system with a
B12 deficiency behaves like an electrical system that's shorting out. This
is what happens in multiple sclerosis when the immune system attacks the
nerves. However, MS will usually come and go, attacking in bursts. B12
deficiency is slow and constant. Although it's a water-soluble vitamin,
health individuals will amass a store that will remain available for use in
the liver for 2.5 years after absorption becomes a problem. It takes a long
time for symptoms to show up. B12 is also needed to repair DNA damage, to
make red blood cells and is important in a well-functioning metabolism, so
you can imagine that symptoms can be widespread.

Symptoms of B12 deficiency include psychiatric disorders such as paranoia,
confusion, brain fog, poor memory and depression. A long-term deficiency
can result in dementia that is too often diagnosed as Alzheimer's disease
because although B12 deficiency should be ruled out by a doctor before
Alzheimer's is pronounced, the normal range on a test is too broad to be
predictive. Lab tests indicate that a level as low as 200 pg/mL (picograms
per milliliter) are considered normal (normal lab range is 200 up to 1100
depending on the lab) is considered a healthy range, but people will
results at 400 may be at serious risk for damage. My test showed I was in
the normal range at 225, but all my emotional symptoms improved vastly,
they all but disappeared. I also became much less shaky and clumsy and my
peripheral neuropathy resolved.

Symptoms list of B12 deficiency from Web MD:

   - *weakness, tiredness or light-headedness  *
   - *rapid heartbeat and breathing*
   - *pale skin*
   - *sore tongue*
   - *easy bruising or bleeding, including bleeding gums*
   - *stomach upset and
weight<http://www.webmd.com/diet/tc/healthy-weight-what-is-a-healthy-weight>
    loss*
   - *diarrhea or constipation*

*If the deficiency is not corrected, it can damage the nerve cells. If this
happens, vitamin B12 deficiency effects may include:*

   - *tingling or numbness in fingers and toes*
   - *difficulty walking*
   - *mood changes or depression*
   - *memory loss, disorientation, and dementia*

*B12 deficiency in infants, if not detected and treated, can lead to severe
and permanent damage to the nervous system. New mothers who follow a vegetarian
diet <http://www.webmd.com/food-recipes/guide/vegetarian-and-vegan-diet> should
have their babies' B12 levels checked by a doctor.*
http://www.webmd.com/food-recipes/guide/vitamin-b12-deficiency-symptoms-causes


Please know that people with celiac disease and their relatives are at a
much higher risk for B12 deficiency. Celiac disease itself can impair
absorption of B12 and very often co-exists with another autoimmune disease
called "pernicious anemia" that prevents a patient from producing a
substance called "intrinsic factor." The B12 that is abundant in meat, eggs
and dairy products, but without intrinsic factor, you can eat as much steak
and eggs as you can stuff into your gullet, but you can't use all that
wonderful B12, it won't be available to the body without that extra
molecule of protein bound to it that changes it from cyanocobalamin to
methylcobalamin. Pernicious anemia is also very common in the elderly.

If you think you may have pernicious anemia, if you are showing symptoms of
B12 deficiency, please get a blood test and ASK FOR A COPY OF YOUR RESULTS.
This is your right in the United States. It may be wise to make sure you
are also getting a hemoglobin and an MMA test, these will be extra-high in
people with a B12 deficiency. Your doctor may very well not realize that
the lab values for a normal range are far too generous. You want your B12
blood levels to be at least 800 pg/ml for optimal results. If you can't
afford a test because of a lack of insurance, buy the supplements. Because
it is a water-soluble vitamin, you can't amass too much of it, you'll
release what you don't need in your urine. When people who are deficient in
B12 start a supplement regimen, they often report a very distinct euphoria
that may last a couple of days. If you feel this sensation, you'll know
that continued supplementation is crucial.

Here's the most important thing I've said so far. If you have pernicious
anemia, taking a common B12 supplement will not help you. Supplements will
usually contain the same kind of B12 that is available already in animal
products. You want to get the kind called "methylcobalamin" (also called
hydroxocobalamin) which is often taken in sublingual (under the tongue)
form. I have, unfortunately, seen the wrong kind of B12 (cyanocobalamin) in
sublingual form in a product called "B12 shot," which masquerades as the
kind you would get from your doctor in the form of an injection. It is NOT
the proper form of B12, so make sure you are getting a supplement that
contains METHYLcobalamin. Your doctor may want you to get shots, but new
studies have shown that sublingual forms (even if swallowed) are just as
effective.

from The American Family Physician site:
http://www.aafp.org/afp/2003/0301/p979.html
TABLE 4
Schedule for Vitamin B12 Therapy
------------------------------
Route of administrationInitial dosageMaintenance dosage

Oral

1,000 to 2,000 mcg per day for one to two weeks

1,000 mcg per day for life

Intramuscular

100 to 1,000 mcg every day or every other day for one to two weeks

100 to 1,000 mcg every one to three months

My father was diagnosed with Alzheimer's disease and died a couple of years
ago. I'm convinced that he had B12 deficiency because of his reliance on
medicine for stomach acid (he had ulcers and digestive problems for years).
Unfortunately, I wasn't able to convince my brother, his legal caregiver,
to get him tested for either celiac disease (I was biopsy diagnosed) or B12
deficiency. My brother had little faith in the legitimacy of my diagnosis
as he became very attached over the decades I was ill to the idea that I
was a malingerer. This is very common, I know now, in families.  I also
know my dad used to receive B12 injections before his doctor retired, but
quit getting them decades ago. So, yes, I'm a bit fanatical now about
getting the word out. My hope is that I can prevent someone else from the
devastation of watching a loved one die in this brutal fashion.

My best to all of you,
Kit Kellison

Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html
Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC