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

> strange symptoms they include muscle twitches in my legs and arms.  My nose
> will itch and my whole body will tremble.  In addition to these there
> feels like there is a lump in my throat on the left side.  when I
> swallow I want to tilt my head to the left.  However I don't feel a
> lump by touch.  It seems like I can't get enough sleep.  Very tired.
> I will wake up at 5 am and want to go back to bed at 9am.  Today it
> feels more like a panic attack.
>
> I got the lump and feel light headed.   I know I have been gluten free
> and can't figure out what is going on.  And the thought of explaining
> this to a doctor scares me.  Does anyone know what sort of doctor I
> would go to?  I am very confused.  Does anyone out there have anything
> like this ever happen to them?

I doubt this is gluten-related, actually.  It sounds like a thyroid
problem to me.  Please go to your regular doctor (or an endocrinologist)
and have them do a blood test.  Thyroid problems are fairly easy to
treat and sometimes go together with other auto-immune disorders.  If
it's not a malfunction of your thyroid, then you can look for other
causes.  But this doesn't sound strange at all.

Good luck!

-Christie

********

Start with your internist.  Although I am not in the medical profesion- I
wonder about your thyroid?  An endcrinologist would check that- but your
internist could order the basic test too I think.  Do see a doctor, but
before you go, make a list of symptoms, and maybe a calendar of when they
started and are happening, so you can give the doc a quick picture of the
situation without forgetting anything.  Good Luck.

********

Hi Heather~ I don't have a clue about your weird symptoms, but wanted to
let you know I'll be praying for you...the best thing for a panic
attack!  Lisa Reynolds<><

*********

Hi Heather,

I would definately see a doctor if I were you.  The syptoms you describe
could be neurologic in nature.  My daughter was diagnosed with a Chiari
One Malformation and Syringomyelia last year.  Her symptoms were very
much like you describe.  The best doctor to go to would be a good
neurologist, one that is very familiar with Chiari.  I would insist at
the very least of having MRI's done of your head, cervical and thoracic
spine.  Usually they will only do head and cervical spine.  They found
my daughter's syringomyelia in the upper part of her thoracic spine.
These are not symptoms of Celiac, so make sure you have them checked out.

Christine

*********

You may have an iron deficiency. I had similar symptoms including
leg cramps. After I began taking over-the-counter ferrous sulfate, the
symptoms went away and I feel much better.

Judy

*********

Heather-  always behind a panic attack, there is a whole
story that usually is not recognized.  There are two ways to deal with
it.  One is to take a tranquilizer until the crisis (whatever it is) is
over.  The other is to sit down with someone who understands human
nature and work it through.  The tranquilizer approach works, but  only
by postponing the issue until next time.  The analytic approach not only
works better, but adds to one's self esteem and understanding.  Judging
from your post, you are a good observer, naturally analytic and
contemplative.  I think you should take this opportunity to do some
exploring of  yourself.  The trouble is, there are all kinds of
incompletely trained people who offer assistance who are not really
capable of delivering what they promise.  How to find such a person is
the problem.  I can tell you that the best people will not offer
tranquilizer or other drug options, for the reasons listed above.  Start
by asking about drugs.  If the doctor offers a drug, ask him for the
name of someone in your area who does not use drugs.  Some good
therapists will answer by saying that they have no objection to drugs,
but do not recommend them.

I am a retired general practioner with special experience and training
in psychoanalysis.  My wife and four of my six children are celiac and I
know what a tricky business celiac can be especially when you are
experiencing "strange symptoms?. I will go through this with you by
Email if you want.  Good luck and let me know what you think about my
thoughts, whatever you decide.   Jack Maines, North Creek NY (using my
wife's computer). PS- some of the MD"s who are experienced in treating
celiac disease, like Joseph Murray at the Mayo Clinic in MN, or Peter
(?) Green in NYC might also be helpful.  JM

***********

Hi Heather:

I've been gf for 8 years - but have unfortunately experienced several
epidoes of somewhat bizarre neurological symptoms.

The first go around:  parathesias (tingling sensations that run up and down
the body), pins and needles, numbness, some painful neuralgic stuff.

Solutions:  Got with a great osteopath who understood nutrition and I did
much personal research into malabsorption/nutrition (which can be hard as
there isn't much out there regarding pure nutritional science).  Started
with B12 injections - even tho none of the many blood tests revealed any
deficiency.  Began taking high quality vitamins:  sublingual b complex,
ester-C, multi - etc., etc.  The osteopath was a life saver - a neurologist
at the time was worthless.

Second and worse problems:  Hypnic jerks - something that prevents me from
falling asleep - very rare apparently.  Also developed twitching all over at
approx. the same time.

Solution:  Neurontin (prescription drug via neurologist - a good one this
time) very expensive - but effective.  Also MAGNESIUM.  I would really look
into the mag. if I were you.  I think I read something at some point about
the lump in the throat being associated with that too.  Something I also
experienced in between the neuro. things.  Had a swallow test that didn't
show anything.

The mag. of course needs to be taken in moderation - as it is laxative in
nature.  A good one is important - as there are several forms of it.  I take
SolarRay brand - Magnesium Asporotate.

Interestingly enough - the mag. "cured" a chronic PVC (premature ventricular
contractions) heart palps that were very annoying - had lots of tests for...

Celiacs don't absorb vitamins and nutrients very well.  For some reason most
physicians "don't get it".

Good Luck - let me know if you have any questions.

-Laurie

***********

I have had these symptoms too.  The feeling of constriction
in the throat is kind of alarming.  I don't have any good explanation,
though.  I had them a lot until I went gluten free (since April).  I
still have them sometimes -- I've been assuming I must still be getting
some hidden gluten.  It's very frightening, and like you, I don't quite
know what to do.  I'm tired of talking to the doctors because none of
them know much about celiac disease, so I just try to keep going and
still keep trying to stay gluten free.  My neurologist hasn't ruled out
MS completely, so I suppose this is still a possibility.  Also, I am
taking an antidepressant (Celexa) and Provigil, which is for the fatigue
symptoms and after reading about them, it's possible that some of these
symptoms are just side effects of the medication.  Are you maybe taking
any antidepressants?  I am hesitant to just quit the medications, as I
think I really need them.  I don't have any good answers, but maybe it
helps to know there are others out there experiencing the same things.

Janine
Boise, Idaho

*********

Hi Heather, The details of your symptoms reminded me of the kinds of
details homeopaths like to hear.  I have no idea what homeopaths are in
your area, though.  Maybe chiropractors and/or naturopaths would also be
interested in those kinds of details, too.

Amy in Mpls.

*******

Hi Heather:

Know how you feel, strange things happen a lot.

Although I have not been diagnosed, as I refused to go on gluten long
enough to have the biopsy done, I do feel much better on the gf diet.  The
gastroenterologist suspects that I have been Celiac most if not all my life.
I also have a large hiatus hernia, and have a problem with eosphagus spasms
and they hurt, had one today, and had to take some Dioval.  It takes time
to release but does.

I also have diverticulitous, spastic colon, along with the Celiac.
I had 2 ablations done on my heart in 1997 as I had suffered from
tachychardia for nearly 30 years.  Now they are trying to figure out why I
have fast heart beat, more so when I move fast, or lie down at night.
Also I have noticed that I feel a little light headed at times, more lately
and have told my doctor.

Just explain how you feel, and describe it the best way you can, if he
laughs at you, find another doctor.  Some doctors have not compassion at
all, and have never been sick to know what it feels like.

I am also very tired, could sleep for days, then for a while I am okay
again.  But when I get bad, I can just fall asleep no matter what I am
doing.

And I have muscle spasms, legs, back, and lately have had trouble
swallowing.  Had that checked out, and found the large hiatus hernia.
So please, know that you are not alone, as to what causes any of it, who
knows, as I don't think the medical profession knows enough about Celiac,
and some really don't care, and will tell you that it is all in your
head.  NO, NOT.

Good luck,
Joan, Ontario

********

Heather, Have you had your thyroid checked? I have panic
attacks, although I am on thyroid meds, I find when I have these attacks
the thyroid is out of balance. The dr. says it is the panic attacks
making the thyroid malfunction but I say it is the thyroid causing the
panic attack. Of course it is the same as with celiac, the dr. makes you
feel like you need other proffessional help, or it is stress, you
probably know the way they make you feel. I would suggest you go to your
family dr. and explain it to him and ask for thyroid tests and a mild
relaxant until you get the results of the tests.  It is scary isn't it?
I talk to myself when I have them and tell myself it will pass and I am
not going to pass out and everything will be ok. Convincing yourself of
that isn't always easy.  I am 62 years old , have Celiac.(biopsy
diagnosed 18 years)  hypothyroidism(on meds for 25 years) , pernicious
anemia(dx'd at the same time as celiac) , osteoporosis, mitral valve
prolaps and a few other medical problems and I just retired from work
last month. During the time I was so ill, I had to keep working as I was
a single parent. I still have the odd gluten reaction especially when I
eat out.(which isn't often)      Wyn from Canada

********

Heather - have you had an endoscopy?  I have had some trouble
swallowing food in the past.  I am on prilosec for reflux - have you
been tested for that?  My gastroenterolgist does my primary care and I
feel very confident with his referrals where needed.  AS for the
tremors are you by chance on any serotonin uptake meds like Paxil or
Prozac -they have tremors as side effects.  I have benign essential
tremors which were aggravated by being on Paxil.  I do not take meds
for the tremors as they are hard on the gut and my neurologist and I
have decided to put off aggravating my insides any more than necessary
for the time being.

 I am now off Paxil and my tremors are back to
"normal" (only when tired and stressed).  One easy out
might be just to up your potassium levels if you have
not done this before - helps leg cramps etc.  Just
reread all that and realize I sound in bad shape -not
true - I think with impaired autoimmune disorders we
are susceptible to a lot of problems.  Keep your chin
up!    Janie

********

Many Celiacs and others with gut problems have thyroid related
problems too.

A simple blood test added to your next series of bloodwork  will tell you a
lot. Check for TSH levels, your doc should be able to explain all. If there
are  thyroid problems found, email me back for a comprehensive web site on
that and all related things. Chuck

*********

Please have your thyroid checked immediately.

Elysse R. Paige
Human Resources Analyst
Medical Management Program
Housing and Dining Services

********

Heather,

I am new to this too, only diagnosed 2 months ago.  But, have you been
tested for vitamin and mineral deficiencies?  I have neurological
symptoms and muscle weakness which we are still trying to determine
cause--may be due to my vitamin deficiencies, may be due to Celiac
Disease itself (which was diagnosed attempting to solve weird symptoms I
have been having) or may be due to a co-occurring other autoimmune
disease.  I would start out with your general practitioner and see who
they suggest you follow up with.  I have been to many myself and the
list of referrals continues as more test results pour in.

Good luck and God bless,
Linda

*******

Heather,

Sounds like may be allergic 'tension-fatigue' syndrome.  Problem now is to
determine exactly what food or inhalant (or foods/inhalants) are
responsible.  That may take a long time since possibilities are endless.
Need to be a detective -- with my clinic patients to determine
food-allergens I put them on a diet which can be determined to be
'safe' -- no guarantee it is, of course.  Technique is called "add-back"
elimination diet - patients usually quit before we accomplish anything.

Create a diet consisting of 1-2 proteins, 1-2 fruits/vegs/fats --
eliminate all grains!  Very important:  use only foods which you rarely
eat - intolerance occurs usually in foods we love or eat continuously.
Keep eliminating foods until you can 'clear' all symptoms for 2-3 full
weeks -- then "add-back" foods 1 at a time separating them by 3 days
('test' 2 foods/week approx.) Save grains for last (no gluten of course)
and permanently eliminate foods causing a reaction.  Can re-try in about
6 months or so, if desired.  This technique is time-consuming,
irritating, difficult (only whole, un-processed foods to be used as
'baseline' safe diet - no combinations or chemicals or molds:  fresh
foods.)  But it can "unmask" the allergens so when you do react to badly
tolerated foods, you may do so violently. ** Problem:  usually inhalants
are a factor also and they are harder to eliminate than foods (dogs,
dust, cats, birds, trees, molds, wool, even cotton, some plastics .........)

If you can find a sympathetic allergist, would be helpful.  Usually
inhalants are seasonal (not always tho) so that may be a clue -- if you
have pets, almost definitely they're a problem (can clear out the pet -
can't clear out the microscopic dander from the air for over 3 years!
even with air purifiers - and molds live on the dander in the air, in
the heat'g/cool'g ducts, bedding, rug fibers,  etc.)  And blood work is
very inconsistent as diagnostic tool to screen for allergies. ** Gluten-
free diet which eliminates celiac/DH symptoms can be the factor that
unmasks the other allergies - and all allergies do not clear after
maintain'g g-f lifestyle.  (I am battling with the problem myself--  not
with much obvious success - but all dairy seems to be a very common
problem and is for me, I think -- not just lactose (milk-sugar) but
intolerance of casein, whey, lactalbumin - just a few of the 40 or so
milk proteins!)  Best of luck -- might try working w. the foods alone
first, to save your sanity. Later if still problems, try inhalants.

*********

Sounds like your thyroid may be going nutty.  The lump could be
a goiter or swollen gland in the thyroid gland.  The muscle problems can
certainly be related and absolutely the tired - not enough sleep.  Have
your thyroid tsh/t3/t4 levels checked.

Best wishes, Jill

********

Have you been checked for thyroid disease?  The fatigue reminds me of that
sympton that appeared about 6 months after I was diagnosed with celiac.  I
insisted on the blood test and was diagnosed as hypothyroid.  Hope this
helps you.

********

Could it possibly a thyroid problem? Just a guess on my part..my
sister had twitching before she was dx with thyroiditis which is an
autoimmune disease also.

***********

As well as having Celiac, I've been diagnosed with mitochondrial
myopathy, which seriously affects the cells of the muscles.  Fatigued,
cramping, jerking, etc. all the time.  Not only do my cells lack nutrients
because of the Celiac, but also the essential elements of a healthy cell to
make energy even if it was getting them all.  A real double whammy.
Fortunately we have one of the (if not the) leading reasearch centers in the
world here in San Diego at UCSD.   I was extremely fortunate to get to see
one the leading researching MDs who put me on CoEnzyme Q10.  I can not tell
you...I cannot describe even to my friends, the immediate improvement of
Biblical proportions that this gave me. Where had my life been all these
years?   The fatigue, the clumsiness, the foginess, the running out of gas
midway through the workday, the waning interest in things, the ho-hum social
enthusiasm.  All gone and virtually overnight.   As a middle-aged male who's
been around the track, I don't jump on bandwagons nor go for any of these
diets that are always coming along.  I'm very conservative and only rely on
the proven word of a highly-skilled physician.   Nothing against homeopathy,
herbal medicine or any of those, but I'm ultraconservative and traditional.
So when I tell you that this gave me my life back, and instantly, you're
getting that from a hard nut to crack.  Turns out that while I hadn't heard
of it, all my friends were taking it on a lesser level already.

The best I've found is CoQ10 in combination with carnitine (they work
together in the cells) which you can get anywhere.  GNC has a good formula.
(I'm not espousing this store...in fact, I take another brand now due to the
co-formualtion with vitamin E which CoQ10 should be taken with and the bulk
that I have to buy it in.)  I'm not "ennervated" ( I can't even drink
caffeinated coffee) nor "stoked."  I wouldn't go for anything artificial nor
that would falsely raise my metabolism.  But to get it back to where it
should have been all the time, everybody says I'm my old self, and
coincidentally lost 10 pounds I didn't set out to lose (although I should
have.)   I have as much gas at 5PM as I do when I show up for work.

It's amazing.

Please post this to the group in your summary.  I'll bet many could use the
info.

Oh, and by the way, the biggest concentrations of CoQ10 in the body are in
the liver and the heart.  So if your heart (which is muscle, after all) is
dragging along or irregular, this could get it back on track.  My PVCs (pre
ventricular contractions), and pounding and missing have stopped.

*************

Heather:

Get thee to an endocrinologist and have a full thyroid panel done, including
TSH, Free T4, T3, and thyroid antibodies.  You may have an autoimmune
thyroid problem.

Cecilia Vohl
Cecilia's Gluten-Free Grocery
Email: [log in to unmask]
Web site: www.glutenfreegrocery.com
Phone: 775-827-0672
Fax: 775-827-5850
Toll-Free (orders only): 1-800-491-2760


**********

Sound like Gluten to me.  Are you very sure that there
is no comtamination, ??? have you been eating out.

Calcium with magnesium will take care of the muscle
cramps.

This is just from my experience.  Hope this helps.

Dwight

*************

hi heather, read your email on st johns list. i have had
the lump in throat and tired and weakness. for me it was an allergy
response to food or a supplement. i had to eliminate other things
besides gluten, like caesein, soy , and all grains for now. had to work
on candida better too. i have had the best success with supplements from
www.kirkmanlabs.com. they have hyperallergenic ones that i do best on. i
am very sensitive. i have been going to dr. john frey chiropractor in
ft. myers and did alot of testing with him. he tests for everything
glutens, allergies and metals, candida and bacterias. takes awhile and
it is out of pocket cost. good luck to you. it takes awhile to get to
figure it all out, harriet