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Dear Friend,

I know none of you are Drs. and probably your views come from the
perspective of being tested to confirm celiac.  But, I am now asking you
for a perspective from your *celiac* view.  The Dr.s that do biopsies
generally do not have this disease, they only have their bills to pay and
families to feed and research to gather.  The view that I would apprecite
would be one from the perspective of being very ill and wanting to use
the time that is given on this earth wisely.  I really do not care about
having a diagnosis I just want to feel better.  There is a time to be
born and a time to die, so says God's Holy Scripture.  Man's
responsibility is great, God's providences pure, just and unchangable.
Having said that...

I am 50 years old, wife to a very dear man struggling with hardening of
the arteries (although chelation treatments seem to be helping!)  and
mother to a 27 year old daughter that had a baby in March, followed by a
kidney removal for a very rare kidney stone disorder, a 24 year old
daughter that married a man from England in February, is pregnant with
their first baby, coming home on the 14th of December to have her baby in
the US and her husband is hoping to immigrate and gain his visa papers
*before* the baby comes, thus they will be apart for some months and she
will be here needing us to help her with baby etc.  AND we have an 11
year old son that we are homeschooling!

Our home flooded a year ago last October, we lost just about everything
and had to regroup quite quickly to be ready for our daughters wedding in
February.  House had to be gutted, totally redone, as well as all
furniture etc.  and etc.  replaced.  We did not have flood insurance
until 10 days before the flood or we would have been forced into
bankrupcy.  God was merciful to us, indeed!  Needless to say, I am now
knee deep in visa papers, preparing our home for our daughter and
son-in-law AND new baby, have just gotten health insurance (to take
affect next week actually) and I barely make it through each day due to
exhaustion and intestinal trouble.  As far as I am concerned, this is an
emergency situation and I will soon starve to death or wither away if
something doesn't change soon.  Life goes on with it hussle and bussle
but my body will not continue like this for much longer!!

Now, down to me and the situation with celiac.  (I know that I already
told you most of this in an earlier posting but I really need some advice
from some of you and need to know that you understand all of this!  So,
here it is again!)  For the last few years I have done nothing but gone
down hill.  In bed, out of bed, very ill, not so very ill but then again
exhausted all the time.  I get up thinking I am full of energy and then
eat breakfast and my day deteriorates from there.  I drop (and I mean
drop) into bed early in the evening due to inability to continue
functioning.  Some weeks are better than others but there is not a way
for me to stop functioning or I surely would have long ago.  My
intestines swell up, diah.  is easily brought on by eating something I
shouldn't.  I have eliminated the foods that I thought were the culprit
but things do not seem to eliminate the whole trouble and give me stomach
aches.  Corn, yeast, bread, soy, dairy, potatoes, fruits, sugars, any
sweeteners, etc.  and etc..  If I eat bread, my intestines begin to swell
unlike anything I have ever seen.  I thought it was the yeast.  Pasta
does the same, although it has taken me quite a while to figure that out
so I have been continuing to eat it from time to time.  I can now only
eat vegetable, rice and meats and water.  I have thought that I slowly
have been losing the ability to digest foods.  For about a year or so
(maybe longer) when the swelling gets bad, I can feel it in the insides
of my arms, just under the skin and behind my knees and under my arms.
Something seems to back up and fill up my glands (if that is what they
are).  Then, after some time that seems to subside as well as the
bloating of my intestines.  I have been concentrating on staying away
from breads, corn, dairy and eggs.  As they all give me terrible stomach
aches.  I am afraid to eat at restaurants because I never know when I
will put something in my mouth that will end up sending me to the
bathroom with trouble!!  Sugar had to be eliminated, including fruits
about a year and a half ago, as it began instantly souring my stomach and
then causing terrible intestinal spasms.  I have asthma so I stay away
from all dairy.  I also seem to be terrible hypoglycemic and have to put
something in my mouth quite frequently, but what????

Years ago when I was having trouble with intestinal cramping and spasming
a Dr.  told me that I had irritable bowel.  Did not help me much at all.
A little over a year ago I went to see a local Dr., as I thought I had
diabetes and was quite ill (symptoms just like pregnancy-shaky, having to
eat all the time etc.)  I dehydrate easily and they were concerned about
that.  He couldn't find anything wrong with me.  This begins to make you
think you are just plain old crazy!  I had been told by a friend that I
probably had candida and had been on a candida program for a while and
when I stopped taking the candida stuff....things began to improve!  Now
I wonder if the capsules didn't have gluten in them?

Now, here is the question that I am posing, now that you know a little
history.  Last week I posted my symptoms into a Christian Dr.s advise.
He responded to me by asking me if I had ever been tested for Sprue?  I
had never heard of it, as none of the Dr.s had even ever mentioned it!!!
I typed it into my internet browser and found oodles of sites.  I have
now spent each day reading and reading and reading!!!  There I found
myself!!!  I finally found what surely has to be wrong with me, but for
the *yellow stools*.  That is the only symptom I do not have!!  I have
even been cutting out and cutting out foods, thus probably relieving some
of the symptoms and difficulties for my intestines but not fully removing
the culprit!!  One of my mainstays to keeping my blood sugar level stable
has been *Triscuits*!!!  Like shooting myself in the foot, really!!  I
right away resolved not to put any more gluten in my body, if possible!
And here is the delema that I found myself in due to that resolution....

When I called the local Celiac chapter of the National Association for
Celiacs (Not just sure of the exact name), the woman told me *NOT* to
stop eating gluten or any testing they would do would not be accurate!!!
What???!!!!!  Keep putting the poisons into my mouth that have about
killed me?  Doesn't sound reasonable at all!!!  So I went back to the
internet research and there it was.........they even will re-introduce
gluten to see if someone becomes ill again!!!  But you see, I also read
that not catching this and letting it go on for years can cause cancer!
I may already have cancer, as bad off as my body is, why would I want to
continue filling it up with these toxins, so that a Dr.  can *prove* that
his guess is right?!!!  Yes, I have read your web site but am I not then
putting myself in a place of great danger by waiting for several weeks
for my Dr.s appointment, then time for the testing to be scheduled and
then having them cut out a piece of a very raw intestine to possible get
infected anyway?  Wouldn't it surely be wiser, at my age, to just
eliiminatte the gluten and see if that controls the situation and
probably seeing an allergist and dietician as well?

I really need to have some good reasons for continuing to eat that which
is killing me daily and would like your opinion, as I know you are
pro-testing!  When one has the *difficulties* that I have one is not wild
about making it worse to see if you do really have the *difficulty*.  The
other thing that I am wondering is in regard to my cutting out of breads
myself about a year ago.  Wouldn't that have helped my intestines a great
deal itself and possibly improved my intestines so that the testing would
not be as conclusive as say 2 years ago?  There is no way anyone is going
to get me to put bread in my mouth ever again, as it unravels my entire
body's system.

I would also appreciate knowing what other diseases these symptoms could
be indicating?  Obviously that would be the number one reason why one
would chose to be tested, right?  To *make sure* that it isn't something
else instead.  I know I do not have Crohn's.  What else could it be?  If
I go on the gluten free diet and it eliminates these serious problems
wouldn't that speak for itself?

Thank you for listening, helping, and caring.

Pilgrim South