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

Thank you SOmuch to everyone who sent me information on B12 deficiency
as well as soy/other food sensitivity symptoms. The information was
invaluable. The summary is very long and will be in multiple parts. Just
to update you, it seems my symptoms ARE due to B12 deficiency. The
neurologic symptoms are nearly gone and the nausea/vomiting have
stopped. The night sweats and hot flashes stopped after one B12
injection and my general "sick" feeling is gone. The remaining symptoms
are fatigue and decreased exercise tolerance (i.e. going to the store
wears me out when I can normally do an hour of aerobic exercise no
problem). But I know those symptoms too will go away with time.
  A little info on B12 deficiency for those of you who are interested (
there is also more in the summary). It is common in celiacs  due to poor
absorption and decreased gastric acid production. There is also an
autoimmune form of b12 deficiency called pernicious anemia. I am writing
all this in case anyone else has similar problems since my doctors were
not able to make a diagnosis (they ran a lot of tests) and others may be
in the same boat.  I had b12 deficiency when I was first diagnosed 3 yrs
ago, this is a recurrence. I had taken b12 at that time for something
else so in hindsight I now know I had it then and know why my symptoms
improved.  The first symptoms if b12 deficiency are typically fatigue (
I attributed mine to nursing my baby). Many people have anemia. But not
all I did not, I was taking extra folic acid which probably masked the
b12 deficiency. My symptoms began to worsen when I started to wean my
daughter, perhaps because estrogen causes b12 levels to decrease.
Estrogen increases when you stop nursing. I then experienced nausea,
worse in the mornings. This may be due to the fact that b12 is important
in detoxification processes. The liver does its major detoxification
between 3 and 5 a.m. So if there are extra toxins around you may feel
worse in the mornings in the form of nausea or flu-like symptoms. My
neurologic symptoms then started which  were short term memory
impairment, generalized muscle weakness which eventually got to the
point of inability to finish chewing food as I just got too tired. I was
also dropping things a lot/feeling clumsy.  I also experienced impaired
proprioception ( your relationship to everything else in space) and was
bumping my head on door frames as I rounded corners and having trouble
changing lanes when I drove.  The symptoms were fluctuating initially
but eventually became constant, I suppose as my levels go lower.
  B12 blood  levels may not be reliable as people can have symptoms with
normal b12 levels.  B12 is absorbed differently than most other vitamins
as it requires a cofactor. Thus, if you have problems with absorption in
the first place you must take it under your tongue or in shot
formulation. I did sublingual tablets for a day until I could get the
shots from my doctor. I noticed improvement within hours and every day
it continues.
  If you are having similar unexplained symptoms and your workup has
revealed nothing else you may want to consider b12 deficiency as a
reason. Most people experience which are neurologic ( balance,
cognition, weakness, clumsiness), fatigue, and nausea.


Other people wrote the following:

* Consider Menopause due to night sweats and hot flashes
* Consider Thyroid

*1.      Has anyone had symptoms similar to gluten ingestion and it is
due to other food sensitivities ( I wonder about soy)

Yes.  About 8 months after going GF, I began having similar problems.
My GI specialist was stumped so he sent me to a naturopath who
specializes in helping people with stubborn GI problems.  He did food
allergy testing.  I was allergic to soy & other legumes, cow's milk
proteins, almonds & peaches & several vegetables.  When of got off those
foods, I
began to improve.   When my stomach was more settled down he put me on
DGL losenges & stomach acid replacement (Thorne Bio-Gest).  It was very
difficult to reintroduce stomach acid into a stomach what hadn't had
enough for a long time, but I eventually developed a tolerance for it &
the benefits were dramatic.  I stopped losing weight & began sleeping
better at night, had less leg cramps, less gas & bloating, etc.  EVery
thing got better.

2.      Has anyone had nausea and vomiting with low stomach acid? I seem
to have that which may explain the benfit from the B12

Yes, yes, yes!  When you can't digest your food properly, you will
become nauseated.  I was constantly nauseated.  It was aweful.  If you
are low in B12, you certainly have low stomach acid production.  You may
even have pernicious anemia, a progressive autoimmune disease that
eventually seriously impairs and sometimes can destroy your ability to
make stomach acid.

3.      Has anyone had B12 deficiency? If so, how long for the symptoms
to resolve? I am wondering if the nausea and vomiting is from that.

At first I had to do B12 shots two or three times a week.  Then once a
week.  Eventually I only needed them once a month.  My ND wants me to
get the test for pernicious anemia, but since the treatment is the same
whether I have true pernicious anemia or not, I don't see any reason to
get tested.  B12 makes me feel better, so I keep using it.  Without it I
get very tired.  With it I can function.

One of the consequences of low stomach production is overgrowth of
intestinal bacteria and candida yeast.  I had chronic candidiasis for
quite a while no matter how many probiotic capsules I took & no matter
how often I got treated for it.  I finally found the solution -- KEFIR.
I drink a cup of goat milk kefir every day & I no longer suffer from
symptoms of candidiasis.  Kefir is a miracle food for me.  Since I've
been drinking it, I've been able to reintroduce foods that used to make
me very, very ill.  Kefir is really helping to heal my gut.  If you are
allergic to cow's milk, you may be able to tolerate goat's milk kefir.
If you can't tolerate either, you can make kefir in juice.  Dom's
website has detailed i
Sorry that you feel so sick.  Not everything is celiac.  Some of your
symptoms remind me of other things.  In addition to celiac, I also
have porphyria, which is a liver disorder.  Do so research on this
and see what you think.  check out this website:
http://health.groups.yahoo.com/group/Porph/
Did anyone suggest that you might have new food, medicine, or chemical
intolerances?  My auto-immunity has done that to me.  I have to keep
adding
new foods, or medicines, or chemicals to my "do not eat" list.  It
usually
takes a couple of weeks to figure out what the trigger is, once you are
aware of it.  Try keeping a diary of everything you eat, and all
medicines
you take, and how you feel each day.
    This disease has forced me to become a very good detective.
(Starting
with diagnosing my first child at 15 months in 1971.)

*I had been GF for 7 yrs. and doing very well until I had mysterious
gluten-type reactions. It took me a long time to figure it out, but I
had been accidentally ingesting trace amounts of gluten (glucose in
Odense Almond Paste) in my own baked goods! It made me ill and then also
very sensitive to soy. So now I am additionally soy intolerant-almost as
bad as gluten, but not exactly the same. I can eat small amounts of soy
lecithin and tiny amounts of soybean oil, anything more or any soy
solids will make me very ill indeed. I guess it is common for us to
develop this.

 I had also been diagnosed with Hypothyroidsm, another reason to avoid
soy-it can destoy Thyroid function. I am on Levothroid or Synthroid, and
am doing better now.

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *