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First let me say,  THANKS to all of you for sharing.  This is a tough one to
share as it is a vulnerable feeling.  IT helped me a lot to know you were all
out there and therefore I was 'normal' in a sense - I always feel like I am
the only one in the world that has a problem.   I have included all the
repsonses I got as I found them all quite enlighteneing.  As you read, you
will see that some folks think it is CD driven, others vehemently refute
that.  Almost all of my responses were from women.  Many of you have had this
all your lives.  Many of you had things subside as time has gone on.  Several
of you (as I do) feel there is a chemical imbalane or soemthing missing in
the equation.  (suggestions:  B vitamins, chromium, progesterone)   I also
believe that there is a mental trigger whether it be years of running to
bathrooms in a big hurry or in my case, I was travelling on business when I
had a miscarriage.  I was 1000s of miles from home and by myself when it
happened.  Anyway, good luck and thoughts and prayers are with all of you who
are feeling this and thanks to those who shared their rising from it.  Before
I went on my little trip on Sunday - I told my husband I had to read my email
- he really thought I was losing it - how could I be crying, upset and scared
about leaving and still find time to check email??  I explained that I posted
to you guys and that just reading your stories gave me strength to try - he
understood and is thankful too - as well as my 3 year old son - all he can
talk about is the waterpark and the fun we had.  Again, thanks!

__________

I had the same fear before I was diagnosed.  It was a year or more on the
diet before I was able to go out by myself.  But please be patient, you will
soon gain more self confidence than you ever had before.  I am now driving
across country alone, and standing up for myself with no problem at all.
I had many days before I went gluten free that I felt like you do. That was
because I was always looking for a bathroom in those days. Once my stomach
symptoms settled down, that feeling went away. I always dreaded supermarket
lines and felt uncomfortable in a restaurant. It happens only seldom now when
I get a reaction from something that slipped in.   Nevertheless, I don't like
crowded places either even now...
___________________

I wondered if you have always had this fear or is it something new after gf?
In my early 20's I did have a fear of going to any open public place and
stayed home.  Is got out of it for awhile and began traveling all over the
country.  Now, after being on this gf diet, long trips, or ones that involve
getting on a plane are something that I again avoid.  Maybe it is just the
hassle of all the unknowns, foraging for food, where can I eat, what can I
eat, is this all going to be a big pain, etc.  I think that part of that is
true -it is almost just too much trouble to go anywhere too far and takes
some of the fun out of it..  I would rather stay in my comfort zone at home
where I am safe.  Sometimes though, I think that we have to push ourselves
just a bit to go out anyway, had I not done this before I would have missed a
lot of experiences that I would have been forced to just sit and watch on TV.
________________

I don't know if one can be a 'little bit' agoraphobic, but that is what I
feel I am. I am 53 and have been self diagnosed CD for 3 years. I had gone on
a high protein diet at the suggestion of my naturopath, and began to feel
better and not have diarrhea. A coworker suggested that I look up 'sprue' on
the internet and realized that it was me.
_______________

I don't think the agoraphobia is a new condition for me.  A friend of my
mother's who did afterschool daycare of me when I was 6 or 7 said that I
never wanted to go out to play with all the neighborhood kids - unless I was
playing with her children, I wanted to stay in to read or draw.  These days,
I 'hermitize' on weekends.  I don't want to see people or even talk to many
on the telephone.  Social life is carefully planned - I cannot have too many
evening meetings or engagements or I become overwhelmed.  Going to a festival
or community event is weighed against my energy level.  And I really don't
want to leave my house to travel anywhere, even though the thought of seeing
new places is inviting.
_______________

Hello.  You are not the first to talk about this!  I recently discovered I
have celiac and for the first 2 months I was afraid to leave the house...the
reasons were not obvious, but the more I thought about it, the more I
realized that I was petrified to be out in the "normal" world trying to deal
with "abnormal" (gluten-adulterated) foods and the people who ate them.
Social settings were a disaster, and my first time in a semi-formal
restaurant, I almost lost it...the waitress refused to bring me a small
container of olive oil and a few lemons so I could make my own salad
dressing! (She said, "only our special dressings are available", meaning,
their pre-mixed dressings.  This necessitated a talk with the assistant
manager).

  Also I had a big problem going into places, such as shopping malls,where
the choices for celiacs are few, indeed.   So I plan my trips and meals
accordingly, also taking snacks.

    Here in the US we think we are so progressive, but we are aren't, we are
very provincial...last year I took a month long trip to Asia and saw exactly
how poor the American diet is in comparison to fresh foods in the Asian diet,
where they eat rice and fresh veggies for breakfast.  Likewise, with Europe:
foods are less processed and not stuffed with "fillers".    Everywhere in
America the food industry adds innumerable food additives, many to extend the
shelf life of the product, others to 'bulk" the product out (and save a 10th
of a cent for the manufacturer!).  Recently I bought some Lactaid cottage
cheese, thinking that I could once again eat a little dairy, and voila,! I
called Hood and was told that there IS gluten in the cottage cheese (funny,
it's not listed on the ingredients on the label).    Makes me wonder, why?
What is the need to add gooey gluey starch to a dairy product?

    Anyway, how can you NOT be paranoid/agoraphobic as a celiac?   But it
will get better, I assure you.   Just be comforted by taking a bit of your
favorite food with you wherever you go, kind of like a security blanket.

PS About 2 weeks ago I flew from Boston to Key West, a trip of about 14 hours
from start to finish, including layovers.  The tote bag I carried with me
would have fed a family of 4 for a week!   But it sure felt good, I had a
feeling of control over my environment...never a hungry moment.
_____________

Sometimes I am the same way. I can't stand to go out anywhere at all.
Sometimes when I don't have a choice and have to go out I have panic attacks
for no apparent reason...just being in the store or school...where ever makes
me feel panicky. Mostly I stay at home where I feel comfortable. Hope this
helps to know that you are not alone.
_______________

I can truly attest to the agoraphobia. I have been battling that since I was
14 years old. I always thought it was psychological. However, since having so
many health issues that can relate to it, I am thinking that it is more
physical related. Do you have a heart mur mur? What other health problems do
you have besides celiac? Check on that.

Hi.  I had a similar problem before going GF.  It took quite a while to get
over it, even on the GF diet, and every time I even breathe any gluten, it
comes back.  So, I don't have any flour in the house-only already made bread
for cold sandwiches for the family, and nothing else that has flour is heated
in the house, as the gluten gets air-borne.  I have figured out which stores
I can shop in that don't send their bakery smells throughout and shop only
there.  Sometime in the future, I have to believe this will all get better.
But my lungs and blood-brain barrier all have to heal before it will, in my
opinion.

As long as the little darlings (opoids from break-down of gliadin in wheat)
can get through all those layers, my brain will be affected.  I do think that
eventually good nutrition will prevail and it will all get better, but it is
takings time.
______________

Have you examined the reasons WHY you feel this way?Maybe the GF diet is just
an excuse.  You may want to look at this before it gets worse. This often
happens to women going thru menopause.

What's GOOD about a GF diet?  You will eat healthier.  Foods will be prepared
with more attention to their "natural" qualities.  Assuming you're not
diabetic as well, sugar is not a bad thing!  Chocolate is OK.  Yes there are
hassles in going out to restaurants - but it's getting better.  When people
really know what the problem is, they really want to help you in every way.
There are many good things.  My doctor was very happy to find out I had CD
instead of cancer.  So you read labels.  Big deal.  Go out and have FUN!
There are worse things in life...
_________________

I am sure that it has nothing to do with CD.  I certainly do not have it and
other CD people I know do not have it either.  Sorry.  Have you gotten any
help from your doctor?
________________

It's funny that you mention it. Since going GF, I don't like to go anywhere
but Church, work, and home.  Before I use to love to go out, do things, visit
with people.  Going out to eat is the absolute worse of it all.  Did anyone
else respond the same?
________________________

You need not be so hard on yourself.  It is a very emotional rollercoaster,
and you are not alone.  After 3 years I still catch myself falling back to
that feeling.  I hope you are fortunate enough to have an understanding and
supportove family.  If not and even of, we are out here for each other.  I
promise things will become easier and more natural for you.
_______________________

I'm so sorry to hear you feel you might be suffering from agoraphobia.  I
know the monster on a first name basis.  :-) I first experienced problems in
my late teens, and without the finances nor the insurance to get the proper
assistance, it has gotten progressively worse.  I know most of mine stems
from food problems, finding out I have an intolerance for gluten has made all
the difference in my life (I must say intolerance, because I have not been
diagnosed as having CD).  I have had therapists tell me my stomach problems
were in my head, when for years I knew if someone could figure out what the
stomach problem would be, I wouldn't be instantly having diarrhea and thus
terrfied to leave my house.  I've been gluten-free now for 8 months and have
felt better than I have in the last 15 years of my life (I'm 30 now).  I am
slowly pressing forward, but it's not easy.  If you are first noticing this
now, I will say it is SO much easier to fight it immediately that have it
become an engrained pattern.  Find a professional who specializes in this and
you can return to a normal life.  You are new to the diet and are probably
just starting to feel better, use that to fuel your ability to live without
agoraphobia.  I've lived with this a long time, but I am determined to not
have this be my norm.
___________

I went gf myself three years ago. I had bloodwork done after 2 weeks gf, and
biopsy was done after 2 months gf. They were all negative for celiac. But I
have experimented carefully and have conlcuded that gluten absolutely does
not agree with me. Interestingly, one of the symptoms that essentially
disappeared for me was panic attacks. I had started having real full-blown
panic attacks, and was prescribed medication by a psychiatrist for the
attacks and insomnia. The medications were awful, but they did help the panic
attacks and sleep problems. Then, after I'd been gf a few months, I noticed
that I was taking the meds much less often, and that I wasn't really having
trouble sleeping, nor was I having panic attacks. I was still, unfortunately,
under a huge burden of stress, which was nearly constant and inescapable. But
my sleep patterns were fine and I stopped the panic attacks. I am convinced
these were both due to gluten, but my internist (soon to be my ex-internist)
says not. I haven't taken either medication for years. Don't have any on
hand. I've also stopped taking the daily blood pressure medication that kept
migraines at bay for 8 years. Also stopped the antidepressant I'd been on for
over 8 years. I never thought I'd get off that one. So, I think gluten and
other foods if they don't agree with us, can wreak havoc with every aspect of
our system. I would encourage you to try the allergy elimination diet, or at
least to try casien-free (dairy-free) for a few weeks, just to see what
happens, if anything. And give it time. It can take a while for your system
to settle down.  Hang in there! If I can feel better, as miserable as I was,
then so can you.
__________________________

I know exactly how you feel! I am about 2 months GF. I am 21 years old, and I
should be going out every night, but I just don't feel like it. Please share
whatever you learn with me. Thank you - thanks also for being brave and
posting that!
__________________

Yes, it does take a long time to adapt to this condition but it can be done.
I even took the chance and flew out of state for a vacation just a few weeks
ago although I feared to go.  I just planned well, took my own snacks and
drinks on the flight in my carryon and made sure that my hotel had a kitchen
where I could cook foods that I could enjoy without fear.  It was ok and I'll
maybe try it again in November for a long weekend.  (even though my head
keeps saying don't go, don't go) Just be patient, trust in yourself and have
faith.  But I honestly can't see where going on the diet or not would effect
something like agoraphobia, and I'm a fanatic in believing that what we eat
effects us in more ways than we know.
_______________________

For what my two cents is worth, could you be experiencing some depression
over having been diagnosed? Were you on some medication before gf and now
that your body is absorbing foods properly, the medication is being absorbed
differently...causing some imbalance???
_______________________

I was diagnosed about 6 years ago.  The two years before I was diagnosed, I
was really ill and started suffering from panic attacks and agoraphobia.
Before I was diagnosed, though, someone recommended I start taking calcium
supplements and a complex B vitamin.  Those two vitamins were an absolute
lifesaver for me.  The panic attacks stopped.  It took a long time for the
fear to disappear, but it has.  Just stick to the diet the very best you can
and maybe check into some vitamin supplements.  Good luck to you!
_______________

now I'm no doctor but Ihave had the same problem as you have!  It is a
horrible feeling and I am so sorry yoou are feeling it!  Now, just take it
easy try not to worry about it, I am sure it will just go away in a coupleof
months time!  I felt like this the last year of my illness (before going gf)
but it all went away when I had been gf awhile.  I have no idea how long it
took, it just like slipped off me.......one day I realized "Hey I'm out and I
love it!"  :-)
_________________

I've had a bad time with agoraphobia over many years. I think it started
because every time I left my house it seemed I would get diarrhea and/or
cramps and sometimes have a very hard time finding a rest room. There were a
couple of years I hardly left the house and yard at all. It took tremendous
courage to leave, and sometimes I failed. Diagnosis with cd was helpful in
recovering. I am doing quite well these days, but it was a great struggle to
overcome my problems. I am also careful now not to stay in my house for more
than a day at a time, because the fear can return. I suspect agoraphobics are
never completely cured. I still feel a little panicky sometimes, but I deal
with it.
______________

I have onlly been on the gf diet 6 months, but I still have days where it is
impossible for me to go out of the house.  I am better in that I am finally
able to go to church and sit through a service without getting up and running
out, but I think that comes from the people knowing about my diseases and
accepting me the way I am now.  I can't go shopping generally without someone
with me, only a quick run down the milk isle and to the checkout, an then
only on a day I am not feeling terribly anxious.  Supposedly it goes away
after you have been on the diet, but several people that I correspond with
have been on the diet for years and also take meds to help with it and still
have it to some degree.
________________

I had those symptoms for a long long time, not any more.  Once I went on gf
diet and after about 2 years they faded somewhat.  It was a Vit B complex
deficiency.  B1,B3 and B6 deficiencies have an enormous impact on the brain
chemistry.  I had a complete fear of people, couldn't be around them, I
started dying.  And having to work with them all day was unbelievable
torture.  Now I am talking even in front of groups of 20 or 30 or more people
I don't even know and feel not at all fearful.  Vitamin pills will help to a
small degree, better is to get an injection of B12 and Folic Acid from your
MD.  For me it helped within a week, after 2 weeks I was "normal".  I am
getting now those injections 3 times per year and take a lot of B complex
pills.  Unfortunately our absorption is still disturbed , I don't really know
how, but we have still problems with the B complex which cause all those
mental disturbances.  It's not you, it's this disease of ours that makes you
feel mental.  You have also recurring thoughts,feelings of depression, but
underneath you are still okay, fits of anger over nothing, not many jokes are
funny?  people are just a nuisance?  paranoia?  all from the B complex
deficiency.  Whenever I have another gluten accident, I am back to those
things for a few days.  but I recover now, before I wouldn't recover any
more.
______________________

I used to suffer from panic attack and agoraphobia, I had to take Xanax for
two years.  That was before I went gluten free.Now I don't suffer from it
anymore, not even a little.  And it has been 7years now, that I am completely
healed.
____________________

I know how much you suffer, so please go get help.  Accupuncture helped me
and I had to go for a psychotherapy also.The good news, it can heal
completely.
_________________

I suffered from agrophobia - (spelling?)  - quite badly some years ago.  I
was afraid, like you, of going out the house, but having to work, I had to
force myself out.  I very often couldn't cross roads, even if they were empty
of traffic - the open space in the middle was something I couldn't cope with.
But it was nothing to do with CD, and I really don't think you should look
for the answer there.  (However - though this is only my opinion - I think
the discovery of conditions like CD can be a sort of trigger).  When I
finally admitted to myself that I was clinically depressed, and that the
problem was psychological, then I started to be able to see what it was
about.  Gradually, I defused it, so that now it has completely disappeared.
I know what despair this thing can bring, but the only advice I personally
can offer, is to look for the answer inside yourself.  Few people are
prepared to do this - unless the problem becomes so acute that they have no
alternative.  And even then, in my experience only a minority are prepared to
confront certain aspects of themselves with complete candour.
_____________________

Upon going gluten free, it subsided somewhat, but I found myself a
psychiatrist who put me on nortyptiline, an antidepressent known to help
people with panic attacks, and it did wonders.  I think it rebalanced the
chemicals in my brain.
_____________________

Sally Hackett,  Raleigh NC