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Thank you to everyone who responded.  This is Part 4, since I have
received so many responses.

Ask your doctor about Levator Ani Syndrome. I was (mis)diagnosed with
endo, and my physician wanted to do an exploratory laparoscopy, with
probable removal of tissue, and possible hysterectomy. Signing off for
all of the above before anesthetic. 

I was not convinced it was endo, since I had alot of pain outside the
menstrual cycle - In fact I had severe cramping for 9 weeks straight. I
couldn't sleep with the pain, so was exhausted, and scared. not to
mention becoming a bit depressed after several weeks of this. Then they
did a D & C, which about doubled the pain. I asked who they recommended
for a second opinion before surgery, and was told I didn't need a second
opinion. 

Needless to say, I went to another doc, and she (!) agreed with me. My
regular docs had pooh poohed my inquiries re: celiac, colon involvement,
ultrasound, bladder involvement, ovarian involvement, and referred me to
specialists who could rule out whatever it wasn't before leaping to
surgery. 

It turns out that I have Levator Ani Syndrome - essentially chronic
spasms of the pelvic floor muscles. Which, unfortunately, were brought
on by the high doses of progesterone which my original docs had given me
a few months prior, having decided my body was trying to initiate
menopause & wanting to 'kick start' the process. The cramping started my
first period after that, doubling me over on the floor, and didn't stop
for over 2 months. & comes back every so often, (not in correlation with
the menstual cycle), but I can make it relax now, before it really gets
rolling. Luckily I was diagnosed properly. After the effect of the D & C
on those muscles, I don't want to think about what the laparotomy and
hysterectomy would have felt like. 

Anyway, enough of my whining. The pelvic floor muscles can just go into
cramp mode for a variety of reasons - trauma, severe stress, hormonal
imbalance, etc. It was first diagnosed in men with chronic
prostatitis!!! Go figure. Apparently alot of women are unnecessarily put
thru the endo and hysterectomy treatment, and still have pain, since the
real problem of muscle spasms still has not been addressed. & are
dismissed by their docs, because physicians are taught to think about
organs, and sometimes forget about the supporting muscle structure. 

Also, since the PF muscles are positioned in the body as a sling which
supports & operates the abdominal organs, it is attached in the front to
the pubic bone, and in the back to, I think, the 4th & 5th vertebra.
Which means that when the muscle clinches up, it pulls those vertebra
out of position, causing lower back pain. (as in menstrual cramping . .
.) When mine is tight, I can actually feel a knot in there when I press
on my lower abdomen with my hand. 

There are a few ways to address LAS. You can be on antidepressants the
rest of your life (apparently ADs block the pain pathways, so your brain
just doesn't notice - or perhaps you just don't care); some strange
physical therapies such as mild electroshock stuff, etc. which I would
stay way away from! Or visualization, exercises and biofeedback to train
you to target the specific muscles. The visualization has worked great
for me. The more you practice, the easier it is. At first, I needed a
quiet place to meditate to be able to focus on those muscles
specifically. Now, I can usually do it in just a deep breath and mental
pix, depending on how hectic life is and how much my head is scattered.
Also, a nice side benie is that I can also think away my normal
menstrual cramps, since exactly the same muscles are involved. By the
way, I am still not in menopause 3 years later (I'm 46 now), and show no
signs of peri-m, either. & I think I may just let my body handle the
hormone adjustments by itself when I do get there. 

Actually having endo lesions does not mean you have to have pain.
Sometimes the fix is so easy it can be overlooked. Check out
http://www.endometriosisassn.org/ This is the international endo assoc
so you know they have to have straight and complete information. The
only good websites I've found on LAS so far concern prostatitis. The
female applications are still largely overlooked by the medical
community. I was diagnosed by Dr. Karny Jacoby of Seattle, a urologist.
& treated by Kathe Wallace, Physical Therapy, LLC (206-527-9200) also in
Seattle. The treatment really is easy to learn - I only had 2 sessions
with Kathe, & do fine now on my own. 

I hope this is of some help - the main message here is to do your own
research!!!! Doctors are just people, and there is so much information
out there, and still so much we don't know about our bodies, that they
just cannot know everything. Don't be buffaloed by an authoritative
attitude - it's your body, and ultimately, your health really doesn't
matter to anyone but you.
* * * * * * * * * * * * 

After I went GF, I would still get terrible pain and bloating.  Enough
to double me over.  Sometimes the pain was just centered around my belly
button for a while, then would become more generalized to my whole
abdomen.  It lasted a lot longer than my gluten/celiac pain.  I had
stool testing done by Dr. Fine of Enterolabs in Dallas, TX.   The
results came back with the advice to stay away from dietary yeast in my
diet.  I was reacting to it, too.  Since I have cut the yeast out, the
terrible pains have stopped.  If I accidentally inject yeast now the
pain and bloating lasts for 2-3 days, where my gluten reactions are over
in about 6 hours. 

Your description of your daughter's pain sounds higher than the female
organs, and if she hasn't had a period yet I wouldn't be too quick to
jump in and do invasive procedures on her without exhausting all other
possibilities.

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

. I talked to a health professional friend of mine who was most adamant
that you go back into the hospital and have them figure out what this
is. She said ". 

NO, I KNOW ALL ABOUT ENDOMETRIOSIS, AND ALL ABOUT DYSMENORRHEA. THIS HAS
NOTHING TO DO WITH "FEMALE"  TROUBLES.  THOSE SYMPTOMS DON'T BEGIN UNTIL
AFTER A  GIRL HAS HAD A PERIOD FOR AT LEAST A YEAR. 

She said that she could think of several things right off the bat that
seem basic but are often overlooked. 

"It is not unheard of that obvious diagnosises like appendicitis,
urinary bladder infections, or gallbladder blockage have been overlooked
or mistakenly ruled out 

A pain that severe, when accompanied by fever, could be something very
serious. Doctors no longer act responsibly; they act according to
policies set by 
their employers about how much time and attention they can give to
patients. A patient who doesn't insist on better care rarely gets it.
That mother needs to be 
her daughters advocate with the doctors." 

Its not something that you should be home medicating for the pain. Pain
of that magnitude means that something is very wrong. Sometimes pain is
referred from other areas and its really something else that is the
problem. Nerves lead everywhere and the symptoms can show up in odd
places. 

If your Doc won't pay proper attenton, you need to get a new Doctor.
Politely raise holy hell till you get someone to listen and do
something. Cat Scans for one or even an MRI if they still can't figure
it out. 
* * * * * * * * * *  *
Our daughter who has Juvenile Rheumatoid arthritis is now in her 20's
but she had surgery for stage 4 (the worst) endometriosous(ps). My
understanding is the only way to truly diagnose it is through laproscopy
(belly button surgery). She needs to she a reproductive endocrinologist
and it may be hard to find one who will see her because she does not
want to have children now, but it is very important to preserve her
fertility. I would call the nearest med school and see what I could do. 
* * * * * * * *  * * * *

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