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

Thank you to everyone who responded.  This is Part 1, since I have
received so many responses.  I will summarize again as I receive more.

It is my understanding that Benadryl, Mylanta and Orudis are not GF. 
If you see someone about endometriosis, ask if they have experience with
teenagers because it is a little different. CA 125 is a simple blood
test. I wish I could help more, but it sounds like you are covering
everything I could think of. Good luck. 
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follow up on bile. I read recently an article about gluten and the
livers production of bile.

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I'm a male that had severe pain on the right side. I had two gall blader
attacks. Some times celiacs have problems with the gall blader. After 1
yr. a Dr. perscribed bile salts. in two days the pain was gone. I'm not
saying this is your doughter's problem but it may be.  bile salts or ox
bile can be purchased without a perscription at helth food
or pharmicies.

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I have endometriosis and Celiac.  I am 34 years old and I had four
laparoscopies to remove the endometriosis over the course of 13 years.
The only sure fire way to diagnose endometriosis is thru a laparoscopy.
I suffered with the pain for many years before I was diagnosed with
endometriosis. I was diagnosed with Celiac disease only six months ago.
Try a heating pad with the pain meds (advil or motrin).  It very well
could be the start of her menstrual cycle.  This always helped me.
Since being gluten free I have noticed an ever so slight decrease in the
monthly pain and no change in the excessive monthly bleeding so the
gluten free diet did not resolve it for me.  The only relief I got was
the first few months following surgery. 

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I don't know whether my response is helpful because I don't know if a
young girl can get endometriosis without ever having a period. But I had
endometriosis as an adult, and it is VERY painful! Disabling at times.
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I remember having the CA-25 test. I was told it was to check for ovarian
cancer.

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I wonder if she can be allergic to other foods?  (For ex. I would far
prefer a celiac reaction to my reaction to soy!)  My allergic food
reactions are far different from my CD reactions.  Perhaps start by
eliminating all of the [7?] major allergens & see if this helps.  I
believe they are:  soy, shellfish, fish, nuts,  milk [& milk products],
corn, wheat-obvioulsy 
not the problem, & ??? 

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I have endomet. and I had a hyster. at 37 because of it. I was just diag
a celiac 5mths ago. The pain is severe, but usually does not last
continuously. I would def. take her to an ob/gyn who specializes in
endome. Best wishes and I hope she feels better soon. My menstrual
cramps were worse than contractions, due to endometr. 
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I would suggest you to go to this other exellent site:
http://forums.delphiforums.com/celiac/messages
There are good and knowledgeable people there to answer your questions.
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Your experience is very close to what we went through with my daughter.
I wrote about it at http://www.gluten-free.org/hoggan/ under
Endometriosis 

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I have celaic, am 44 (not a teen) but just had a laparoscopy for an
ovarian cyst and mild endometriosis. The pain is different than "gluten"
pain - sometimes in the middle, sometimes one side or the other, or in
my lower back. I have read it may be autoimmune related, but it's so
common that the connection to celiac is unlikely. I believe the only way
to diagnose it definitively is with a laparoscopy, and based on the
amount of pain she is in I would say it's time to do something on that
level. It's not major surgery, but does require general anesthesia. (I
was back to work in 3 days.) Endometriosis can occur at any age, so it's
entirely possible. There is a lot on the web about it, and probably
worth searching if you are able.

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But severe abdominal pain should never be overlooked. Gluten can cause
this- be sure she hasn't picked up an unexpected source of gluten. And
take her to see another doctor. It could be a parasite, or other GI
problem.

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I've had endometriosis for many years now.  The best way to have it
diagnosed is a simple outpatient procedure called Laproscopy.  Talk to
your daughter's GYN and tell her/him your daughter's symptoms and that
you wish the GYN to send the paperwork into your insurance company to
authorize the procedure.

I am all for natural remedies, but if your daughter has endometriosis
the -best- thing for her is birth control pills.  Yes, she seems young,
but it will arrest the disease and keep it from reocurring in some
cases.  I've been on birth control since age 15.

Vitex agnus castus, aka Chaste Tree or Chaste Tree Berry, does seem to
help some people with the -symptoms- of Endometriosis, but it is not a
cure-all.  If your daughter has the disease, birth control pills -- and
I'm sorry to keep reiterating this -- are the best offense to combating
it.  The two (vitex and bcp) can be combined.  Chaste Tree is best taken
in the morning on an empty stomach and at night before going to bed.
Tincture is best, but if your daughter balks at the taste go for the
dried herb pills.

There are several good books out there on endometriosis if it turns out
she has it.  I highly recommend _The Endometriosis Sourcebook_ published
by the Endometriosis Association.  It explains alternative treatments,
types of surgery, birth control pills, and the dangers and benefits of
Lupron.  (Your daughter should not have to take Lupron or one of the
other menopause causing drugs.  Those are for severe cases when birth
control pills and surgeries can not keep the disease in check.)

Diagnosis first though.  

As much as I like to believe in non-invasive procedures such as
sonograms, they do not always show what is going on inside.  The
laproscopy involves a tiny camera that allows the surgeon to view what
is going on inside.  It may be able to see what sonogram and barium
x-rays cannot.

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I know this is not what you want to hear... and you stressed that the
pain is NOT her gluten pain, but the symptoms you described are my
celiac sons' symptoms to a T. My sons are 8 and 11 and are newly
diagnosed celiacs.  Whenever they have a "gluten attack" sometimes it is
just abdominal bloating, vague nausea and diarrhea and fatigue, but
EVERY ONCE IN A
WHILE...WHAMMO...they get the EXACT same pain you are talking about with
your daughter. (Remember we have only been GF for about three weeks
now).  They run a low grade fever, have diarrhea and vomiting (differing
in amount with each attack) and SEVERE abdominal pain located right in
the center of the stomach around the belly button and occasionally
migrating to the right side. They have both been to the emergency room
with bouts of these pains (severe enough to make them cry and NOT want
to move) before they were diagnosed with CD and the doctors couldn't
find anything wrong with them other than an excess of gas in the
abdomen. They told me they were "allergic" to soda. *sigh*. I am
wondering if the pains you describe are
common symptoms among pre-pubescent celiacs and your daughter is just
now exhibiting these symptoms as she gets closer to puberty. It would be
an interesting thing to find out. I'm sorry for rambling on so long, but
when I read about your daughters pain, and it corresponding so closely
with some of my sons' gluten attacks, I felt I should share. On a
footnote, I was diagnosed with endometriosis at a fairly young age (25).
I don't remember the tests that I had done for it.  Severe abdominal
cramps (located mainly in the lower abdomen, and sometimes in my lower
back), but only when I was menstruating, never in between cycles, and
unusually long cycles that were getting longer and longer. I started off
as a teenager only menstruating for five days, but when I was diagnosed
with endometriosis, I was on my period for 13 - 14 days with the
majority of it being an extremely heavy flow. I would also pass
unusually large clots of tissue. I had a hysterectomy at 26. Anyway, in
summary, I would ask your doctor about this possibly being a new form of
Celiac attack and check to see if there are any hidden sources of gluten
making it back into your daughter's diet. (My sons and I went gluten
free a while back as
part of our diagnosis process and then went BACK on gluten. This
triggered one of their attacks with the same pain your daughter is
experiencing almost immediately. Kind of like their body had finally
healed itself with the absence of gluten, and then allowing gluten back
in triggered the awful pain. ) 

I hope this is of some help. I would be interested to know if other
parents of celiac children respond that their children suffer from the
same pain.

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I went thru that when I was younger....try this..make sure she takes a
stress formula B vitamins every day and 1000mg balanced cal/mag [I use
TriBonor Plus by Twin Labs]....I was given this advice by Carlton
Fredericks the grandaddy of American Nutrition....it worked.  My
daughter suffered with one period before she listened to me.  Never has
cramps and the flow is minimal...[the heavier the flow, the more you
need B vit.]  BTW, the pain she's feeling is probably ovulation.  

* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *