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

List,

Summary to question about Mystery Symptoms on the Celiac Express:
throughout the day, in varying degrees, worsening when I stand up, is a
throbbing in the back of my head, whoosing in my ears, sometimes followed by
a semi-black out and weakness which clears up and goes away if I keep moving,
and sometimes with eating, tho it can persist after this. Seems worse when
I'm tired/cold challenged. Occasionally my lips tingle and my stomach kind of
dances before symptoms...which can also come on while lying down.  insomnia,
hormonal problms, bone problems....six months diagnosed and lessening
symptoms may just be part of the bag... Seems better now that I"m not gorging
on almonds and getting more calcium, more rest....etc etc.  Thing is that
there seem to be many people with similar problems...some just diagnosed some
not.  Mine is probably a mixed bag.....others, I have no idea.

I suspect mine is due to a weakened system, hyperreactive to many foods, my
high levels of phosphorous from bone loss, and being majorly suseptible to
atmospherical allergies (no mold allergies tho) I just think my body can't
deal with it all.  So far it seems that the head throbbing in the back is
probably due to these allergies...food or pollen/tree/mold.
...... Or, hormones that have slipped of the edge of the full moon and come
and go like a yo-yo trick.  OR an ear problem like an infection my body is
still fighting/inner ear imbalance....the list goes on and on and
on.....Since I"m not bothered as much I'm not going to fret unless it gets
worse.  Just gonna keep on tap dancin' hopefully this thing'll eventually
slide off my coattails......

If you read a response that you feel you need to respond to please do,
perhaps I can redirect your concern to the orginal responder. Thanks for all
the great responses...love you guys!  someday the train will come into the
station......

Saskia in Seattle
????????????????????

I wasn't going to respond until I heard all about that "back of the head"
stuff.

My naturopath tells me MY symptoms (nearly the same as yours) have to do with
2 Chinese "reference points"-- that for "sinuses" and that for "allergies"
(food). (I forget which intercostal spaces--- C-2 and C-3, maybe? )
The back of my head hurts during a migraine (food allergy), when the weather
changes (sinus/airborne allergy), and sometimes it just hurts all by itself
for no reason, sometimes being the ONLY cause of what ends up being a tension
headache.

Lots of aching!

Have you had just ONE allergy test or many?  There's more than one way to
diagnose it (blood test, skin tests, stool tests, pulse "challenge",
rotation/elimination and then challenge, and keeping a food diary whenever
you have symptoms to trace a pattern of illness to what you're ingesting),
and with your info that you were neg. for all those things, I'm very
surprised.

It really sounds like allergy to me, but you also don't say if you've been
evaluated for vascular/blood pressure problems, or organic muscular or bone
problems.
??????????????????

Boy, this disease can really do weird things, can't it?  I am currently
undergoing tests to determine (hopefully!) why I am having periods where
I see black, but don't go completely out...like I told the doc, it's like
somebody is dimming my lights!  The first few episodes occurred while
standing but the last one I was sitting in the car!  I had been looking
up and down a lot, reading a map, and we were in the process of making a
sharp turn, but wow!  I also have mentioned to several doctors, who all
look at me like I have holes in my head, that whenever I switch from side
to side in the bed I have exactly what you described...a feeling just
like a hot flash.  I have to toss all the covers off for a few minutes,
and I actually get sweaty, and then shortly after I find myself covering
up again because I am cold!  Weird, isn't it?  I first noticed this about
three years ago...and no answer yet.  I have just learned to live with
it.  I don't have any problem with pain in the back of the head...but
just in the left sinus area, just below the eye.  All of mine seemed to
start after I had a root canal on the left eye tooth, right under that
sinus area, but the dentist and the ENT doc haven't found a connection
yet.  I was told three years ago that my problem was TIA and mild
anxiety.  Now that it has flared up again they are repeating some of the
tests...will let you know if I get a better answer this time.

Meanwhile, good luck to you in your quest for an answer.  Hope I didn't
bore you with too many details of all the above...but maybe somewhere in
there is a clue that will help you...sure hope so.
????????????????????????????????

I may have discovered what my problem is.  I haven't officially from the
doctor yet, but the audiologist says I failed the motion tests...seems I
have an imbalance in how the two inner ears react to motion...which
results in a garbled message getting to the brain!  Hope it turns out to
something as simple as that...she says it can be controlled by exercises
to re-train the brain.  Unfortunately I missed the doctor's call on
Friday but hope I can get in touch with him Monday, as I am leaving
Tuesday for two weeks in Japan.  Will keep you posted.
??????????????????

I've been meaning to get back to you I saw your recent post.  How are your
symptoms?  It's so strange but I have a thing with almonds too.  I go back
and forth, I eat a ton of them and then exclude them bring them back.  It's
so difficult to differentiate between what is actually causing symptoms, what
is helpful, and what is neutral.I keep hanging on to the thought that my
symptoms will start to dissipate with time.  I have also only been diagnosed
for about six months.  It seems it can take some people from six months to
two years to really regain balance with little or no symptoms.

Have you found out any information concerning a possible mold allergy.  This
winter I had candida so sometimes I also wonder about that, however, I'm
quite confident that I conquered the candida.  But it's fall and my
environmental allergies are out of control.

I find out my results from my blood work this week.  I have been working with
a holistic nurse and practioner.  Sometimes their knowleg helps reassure me
that time is a natural process in healing.....I'm just very impatient.
??????????????????

Perhaps you should have an MRI or CAT scan to make sure that it isn't a
problem developing in the brain.  My husband and my daughter had problems and
they were corrected.  There probably isn't anything wrong, but sometimes it
is good to check all the physical aspects.
??????????????????????

It really does sound like your hormones are out of
whack.  What I meant by the anorexia comment is pretty much how you took it
- that when your body doesn't get the right (or any) nutrition whether from
CD or anorexia, the internal systems refuse to function correctly.  I have
had iron deficiency and pernicious (B-12) anemia since 1986.  I recently
learned that autoimmune diseases can be the cause of pernicious anemia.  The
docs seemed so close to diagnosing CD back in 1993 when I first had an
endoscopy, but I guess since my Ig levels didn't come back too bad, they
never mentioned it.  I was diagnosed by blood and biopsy this past January
and, unfortunately because of the long term leeching of calcium, I have
severe osteoporosis for someone my age.  I could just slap some doctors.
It's okay though, because I'm trying to get the bone levels back up with
only diet and exercise; I'd really like to do it without any prescription
stuff.

Within several months of going GF, I had a slew of other problems come up,
some of which I mentioned to you.  The doc ran the food allergy testing,
again through Great Smokies, and that's when I was found out about all of
them.  I did the rotation diet for awhile, which was a royal pain, way worse
than being GF.  But then I was worrying about getting enough protein and
calcium.  So recently I've more or less decided to go back to eating just GF
and not worry about rotating.  I have another friend from this list who
recently had the same food allergy testing.  She came up allergic to oysters
and chocolate, neither of which she has had for at least 10-20 years.  The
lab told her she must have inhaled them (I guess they meant particles).  I
thought that was a howl and told her to tell them she was like Clinton and
didn't inhale.  Anyway, it really made me wonder how good the testing really
is.

About stress, I recently printed an article off a natural foods web site
about stress and healing.  Stress can really affect so many things.  I am
still dealing today with the after-effects of a migraine yesterday that I'm
almost certain is from work stress.

You know one other effect of CD I forgot to mention with me is that I
stopped growing leg hair.  After the doc put me on micronized DHEA
(different from regular), I read that a lack or shortage of DHEA can do
that.  It was pretty nice not having to shave, though.  But, again, DHEA is
another hormone produced naturally by the body when it's working right.

I hope I haven't rambled on to long.  I think that's what happens when you
hit 40 (maybe 30!).  See what else you have to look forward to?!
???????????????????

There are many related immune disorders to Celiac.  It may not be food that
are causing your symptoms.  I am not medical therefore please just take this
for what it is.  Many immune disorders take years to diagnose.  Not to make
you feel bad just to let you know that there most likely is a reason for all
the symptoms you are having and if you don't find out what it is and the
doctors start to act like you might be a someone looking for attention, keep
looking for an answer.  My mother was sick for many years and doctors put
her on anti-depresants and told her she was just depressed.   She has a
disease and it is called fibromyalgia.  This is an immune disorder and has
been related to Celiac.  Her new doctor has it so she recognized to symptoms
right away.  Good luck on your quest and don't stop till you have the
answers.
???????????????????????????

I can relate to your post as I am sure many other females will too.  My
guess is that many will tell you it's perimenopause, pre-menopause,
menopause, food allergies or that you are eating the wrong things and should
try either the Paleo Diet or the Eat Right for Your Blood Type Diet.  I had
been GF for only a month or so when I started having additional problems,
some of which you are also having.

I have went through the headaches (head in a vice feeling) and the
dizziness, and some additional fun things like very sore and swollen breasts
(gained 5 inches in that area).  It has turned out to be hormone-related but
I am not in peri-or pre-menopause.  The first test my doc ran was to chart
hormone levels throughout the 28-day cycle.  The test was run by Great
Smokies (www.greatsmokieslab.com) and was done by collecting first morning
saliva samples on 11 days throughout the cycle.  Turned out that my
progesterone was low during the last phase of my cycle.  During the time of
waiting for the test results, I read up on perimenopause (Ann Louise
Gittleman book) and really thought that's what it was.  Told my doc and he
ran another very simple blood test to find out, and I was not.  This test is
for Follicle Stimulating Hormone (FSH) and has to be done during the first
6-7 days of your cycle and the resulting levels will indicate whether or not
your in peri-menopause.  I now take a natural progesterone during the last
phase of my cycle, my breasts are not swollen and painful, the headaches and
dizziness are mostly gone.  Of course, I have had other problems pop up like
acne, which he also says is probably hormone-related, so I'm not sure we
have the ultimate fix for all this yet, but it is much better.

If I had it to do over again, I would have the doc run the FSH test first,
then if it shows okay, then run the saliva hormone tests.  The perimenopause
book is good but if you're not there yet, your better off finding out first.
???????????????????????

Might be an inner ear problem.  Try ginger.  500 mg twice a day.  Taking any
allergy medications?
?????????????????????

Hi; Your symptoms are exactly the same as mine except I also have a problem
with breathing most of the time.  I've been through all the heart and lung
tests. They were all just fine.  The speacialist said that it has to be an
ingested allergy. I know I have allergies to a few foods, but there is
little change when I stay completely away from those.

I was tested recently, and the doctor ( naturopathic) came up with 17 food
allergies. These test are not totally accurate. He missed some I know and
others that were listed do not bother me.

I'm going to Calgary shortly for a different allergy test and
desensitization treatments. I'm hoping for help there. At least I'll be able
to compare the test results and see if anything is consistent.
??????????????????????

I never, ever get headaches and I've had one now for weeks.  Also dizzy.  Not
to where I can't work, but a nagging dizziness that won't go away.
Decongestants don't help.  What's weird is that I get that lie-down-in-bed
hot flash every night.  I've discussed it with my doctor, but he has no idea.
It's like all my blood had been pooled in my lower body and when I lie down
it all decides to come up to my upper half and flood me in hot blood.  As a
55 yr old male, it's not hot flashes and it's no other time of the day.

It's interesting that you mention mold allergy.  At a previous job I could
hardly breathe and no one else complained.  I raised a fuss until they had
Cal EPA test the air and found out that the air conditioning had been backed
up for years and had a mold colony the size of Venus in the air ducts.  So
I'm sort of a canary-in-a-coal-mine for mold. Hmmmmm.
??????????????????????????????

I don't have your specific problems, but have had my own wierd symptoms the
last couple of years. Doctors are stumped. Recently I discovered in a
gastroenterology textbook that "neurological problems are associated with
celiac disease in about 5% of celiac patients". Unfortunately, it also goes
on to say that a GF diet may not help with these symptoms. I am currently
pursuing this avenue, but haven't made much progress yet
??????????????????????????????

The associated symptoms include the fact that the sensation wakes me out of
a deep sleep, and is sometimes accompanied by sweats.  I get monthy B12
injections (peripheral neuropathy was the tip off in diagnosing the celiac
condition) and have osteopenia.  STRICT adherance to a celiac diet staves
off the GI symptoms: diarrhea, steatorrhea, with associated gut cramping
"dumping" syndrome.

By the way, my estrogen levels are monitored and appear to be fine.
??????????????????????????????

I guess I'm saying that it can be anything. Perhaps you've put your finger
on it when you say it's worse in the cold.
?????????????????????????

I believe its a (grand ) migraine and an aura, I know I've been there I told
my doc and this is what he said, mine is brought on by being light sensitive
????????????????????????

**
(saskia's note)hold on to your seats folks, I am still waiting for some
secondary responses from people so I may end up doing a sequel......wouldn't
that be thrilling?!!