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Thanks to everyone who has responded to all of my questions!

This is primarily intended for those of you who are unsure about CD (it's kind
of a long summary), and are embarking on the diet for whatever reason.  I was
diagnosed CFS (Chronic Fatigue Syndrome) and was surprised to discover that
several others on this list were too--but since having started the
diet--mostly on their own initiative--they made drastic improvements.
I am doing *very* well on a GF diet (almost 3 weeks now) and have had a lot of
advice about what to do re testing.  I've also asked many about what they have
done to help heal the gut, how long it took before they felt better, and what
symptoms they had.

I had a negative blood test, but was told by many that the biopsy really was
the final word, and even then you need a *very good* GI who knows the ropes.
Do not be afraid to stick to your guns, and don't be intimidated by any
doctor!!

It was split in responses re staying on the diet until I got a biopsy/blood
test.  About half of the group is non-diagnosed, it seemed to me.  Half of
them (some diagnosed, but mainly not) sympathized and said to disregard the
tests and not to continue ruining my health in order to get a positive result,
which may take a long time.  The other half stressed staying on gluten until a
biopsy could be done, do allergy testing, and *not to play doctor to oneself*.
All recognized the eventual importance of getting a diagnosis, mainly because
of the possible serious long term damage that could lead to deadly disease.
Most of those not diagnosed said they would like to wait until a better test
is developed.  Indeed, I have read about a test in Europe that is for people
who have already started a GF diet...BUT this was second hand information, and
know nothing about the validity at all, and therefore do not use it, or would
recommend using it as anything by which to measure decisions (until
confirmed--anyone know anything about this?!).

Another symptom I asked about was a coated tongue.  A few responded..and
mainly stated that it went away with the diet (mine is actually fading!!) (and
one said hers came back every time she ingested gluten, and it took a few days
to get back to normal), one suggested vitamin deficiencies, another alluded to
dehydration.

Re how long it took for people to feel better after starting the diet....a
unanimous--*everyone is different*, as many of us on this uncertain journey to
better health have discovered. But most felt dramatically better after a few
days, and within a few weeks to months felt wowee incredible.  Some had yo-yo
symptoms for a while. Some had classic CD symptoms, some had atypical
symptoms, and some had hardly any symptoms.  Some have CD, some allergies or a
combo with CD, some don't know, and almost everyone feels better on the diet.

It was also suggested that my reaction to wheat was allergic (my throat closes
a few hours later, I turn red immediately, feel weird and old symptoms
return), and that I should go be tested by an allergist.

I have started to cautiously power walk/light jog, building up slowly every
day.  I have learned not to push it!  Others commiserated with me in the
benefits of light exercise, yoga, and a low stress environment.  Also
supplements L-Glutamine and acidopholous.  In addition I am taking Cat's Claw,
among other things, mainly for my immune system (my lymph nodes have been
swollen for about two years, and now are starting to get smaller--but as
always, I am not willing to yet attribute any one factor to this--I think it
is a combination of things).  I do not intend any of this as medical advice,
or otherwise, it is only my own experience, mainly from my own investigations
(on the Internet/library books).

Here are some clips from some responses:

Anyway, BMs have become blessedly normal
(occassional bouts of const., but I use ground flax and
occassionally psyllium for when it gets too bad...).  I also started
a vigorous cardio workout 3 - 4 times per week, which also helps a
great deal.  Most impiortantly, I find that if I can just stay calm
and not get all tense/worried (about work, life, my diet, getting
old and so on), then things work much better.
***************
 I had no symptoms other
than iron-deficiency and osteoporosis.  It was only 4 days before that "well
being thing" kicked in.
**********************
I did begin to feel better in a day or so -- the
diarrhea subsided somewhat and that helped a lot!  It was several weeks
before there was noticable difference -- and within several months I had
energy instead of the incredible fatigue from before.  Then the progress
kept going.  Today (at 50 something), I'm ice skating (taking my tests
and beginning to compete) and I'm able to do most things.  I think the
damage to my insides over the years took some toll (so by starting gf
now you may fare better) and so I have other problems with digestion.
Mind you, the progress to "complete" recovery is slow, but when you have
been feeling very bad for so long and stripped of energy and enthusiasm
for life -- the little milestones seemd like a great improvement
************************
In addition to L-Glutamine, acidophilus has been extremely helpful.
If I don't take it, bloating and gas return.  I don't want to give the
impression that the supplements have returned my health to normal.  I
continue to have the same yo-yo symptoms that you describe.  However,
with the supplements the lows are less frequent.  Now I can go several
days with my gut functioning rather normally before having another
bout of problems seemingly out of the blue.
******************************
 It took a few days and then the diarrhea really started
improving and in about 7-10 days I was back to normal again.  Chronic
Fatigue Syndrome I had for many, many years and within a few weeks I noticed
I improved so much I could hardly believe it.  Wasn't too long and it was
completely gone.

I had over 14 symptoms such as diarrhea and constipation, nausea, intestinal
pain, excessive gas, fibromyalgia, chronic fatigue syndrome, STARVED all the
time, acid reflux, insomnia, canker sores in mouth, weight loss, rapid
heartbeat, etc.
All my symptoms started going away when I started the gluten free diet.
***********************************************************************
There are many many internet resources about CD.  Most helpful are the
archives from this listserve, where a gigantic database of recipes are
available.  **Find a good GI**!!!  (I contacted someone in a support
group...found on the Celiac
database.http://www.celiac.com/contacts2.html#C...and found a GI that way).
Again, this is not medical advice-- just a summary of my experience, responses
from other people, and advice I've picked up from reading.  If there are any
questions or comments, please respond to me. I would especially like to hear
from anyone who is in a similar position, to compare symptoms, progress,
decisions and just to chat!

Thanks to everyone on this list!

Saskia Smith
Calfornia