<<Disclaimer: Verify this information before applying it to your situation.>>
Thank you to everyone who responded. This is Part 2, since I have
received so many responses. I will summarize again as I receive more.
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I could not possibly offer any "diagnoses" to consider but I do send you
a caution. Years ago we had a neighbor whose child presented a picture
very similar, except that she was not a known celiac. I don't think I
knew about celiac at that time. I am sure this diagnosis throws a
distracter at the doctors trying to diagnose your child.
However, the mother and grandmother, in an attempt to comfort the child
and relieve some of the pain, applied warm compresses to the child's
abdomen. In her case the white blood counts had not shown an increase
and the doctor did not suspect any significant infection.
What she did have, however, was a smoldering appendix (never seriously
considered) which ruptured during the night. The child survived the
episode but it was certainly complicated by the heat applied to her
abdomen. Her mother and grandmother never quite recovered from the
results of their well-intentioned comfort measures. I never forgot that
lesson either, though as a girl, I remember applying a heating pad for
menstrual cramps.
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my guess, having had endometrosis, is that it is not. The pain is
usually around the period time and in someone so young I doubt that is
the problem. Have you had her gallbladder checked?
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I have had severe endometriosis, but not as a teenager. I strongly feel
that this young girl should be seen by an internist and perhaps a
general surgeon. This does not sound like Celiac pain. I do not
believe there is anyway she would be having pain from endometrosis
without menstruating. Endometriosis is a condition in which the lining
of the uterus (endometriosis) grows outside the uterus and attaches
itself to varies organs and the pelvic wall. It bleeds, just as the
lining within the
uterus, during the period. That is when and how the pain occurs. Yes,
endometriosis occurs frequently with celiac and other autoimmune
diseases. I would not think she needs a GYN specialist; that is, unless
the internist would recommend that.
This type of pain, of this severity, should not be allowed to go on for
more than a month and the child missing school. Pain is caused by a
problem and you should do whatever is necessary to discover what it is.
I would suggest a teaching hospital where you could get the opinions of
several specialists.
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It's unlikely that your daughter has endometriosis if she hasn't had her
first period. The pain of endometriosis is caused, basically, by
internal bleeding. For some reason, when a woman has endo., part of the
endometrium which is supposed to be sloughed off during a period winds
up in the abdominal cavity. Then, during subsequent periods, the
endometrium in the uterus as well as in the abdominal cavity bleed. The
endometrium in the uterus has an "out", but the endometrium in the
abdominal cavity does not.
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What about a possible dairy allergy. The symptoms can mimic gluten
reactions. My 13yo (who also had this type
of pain though not as severe) was just dx as casein allergic. I was
convinced that she had Celiac Disease
(family history, Grandmother and brother) but the milk free diet has
helped her so much. Best of luck to you,
It is so hard to have a child in pain. My thoughts are with you.
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My daughter had extreme pain when she was in high school. She had begun
her period and every month went through the same excruciating pain and
vomiting. We took her to the local hospital and she did have endo.
They cauterized it but did not work. We then went to Mayo Clinic where
they did the same procedure and put her on strong medication afterward.
The removal
and meds really did the job. The pain went away. She has been on birth
control since the procedure which was part of the whole treatment.
There is a little pain associated with period but minimal. I would
suggest that you definitely have them look for endometriosis.
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ummm....I nearly got my appendix taken out when my period started. I
was 10 and I had the same symptoms. My appendix would have come out in
the next day if my period hadn't started - we didn't have so many tests
to tell what was going on. In small girls, it is often difficult to
tell the difference between an ovary starting up or appendicitis. If it
is her ovaries starting up, it should resolve itself soon - if she is
ovulating, her period should come within 3 weeks, right? Do her a
favour - tell her about what she might discover or she may think she's
dying (like I did!).
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I have severe endo. and celiac disease. When the pain is severe, there
are really no pain meds. that work for me. I have tried many
prescriptions. I just have to sit in hot baths, I rub BenGay on the
area, and use a heating pad. The heating pad really helps. For me, the
pain is all around my uterine area and especially in my back. The back
aches are constant. One
theory about endo. is that it is an autoimmune disease. Since celiac
is also an autoimmune disease, we are more at risk for endo.
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Try putting your fingers on either side of her heel on the bottom of her
foot and applying pressure. After a few minutes, start just above the
ankle and apply pressure with your thumb and fingers on either side of
the ankle and work up the calf. If it is cramping, she may feel relief
when you press her heel - going up and down the calf makes the pain
relief last longer. It works for me and my friends. Alternatively,
look into seeing a reflexologist for both an insight into what is wrong
and possibly pain relief techniques. You could also pick up books, but
it might be better to see a professional the first time.
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As I understand endometriosis (I have had it and been treated), it is
caused by tissue from the endometrium escaping from the uterus and
growing in the abdominal cavity. When a person has their period, this
tissue also "bleeds" causing pain and adhesions to form over time. I
don't believe a person would develop this condition before her periods
begin.
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The pain you describe reminds me of the debilitating pains I had before
my ulcerative colitis was under control. The only thing that enabled me
to survive until I got meds was doing yoga - at times literally through
the night because I could not sleep with the pain but certain poses
would relieve it to the point where I did not think I was on the verge
of passing out from pain. The meds that help with that sort of pain are
called anti-spasmodic (against spasms) and the one that helped me is
called LEVSIN - the name brand only works for me - the generic is no
good at all - it is a small tablet that you dissolve under your tongue
and it works almost instantly (a big help when an attack comes in the
grocery store!). My husband, who has Cohn's disease, prefers the LEVBID,
which is a time released version that you take on a regular basis (I am
stubborn and do not want to take anything on a regular basis). That
being said, I would also like to say that after hard work with
probiotics (let me know if you want more info on that) and plenty of
healing time, neither of us needs meds often at all (husband does have
to stick with he Prilosec for GERD though). My 12 year old Celiac son's
severe pains subsided with the gf diet. Hope this helps and your dr will
let you try Levsin. I also encourage you both to sign up for a Yoga
class if you have never done it before (Hatha yoga is what I am familiar
with - don't know much about some of the other types). The poses and the
deep breathing really do help. Oh one more thing: my fear early on was
either appendicitis or a new outbreak of ulcers but ultimately I came to
recognize that I tend to hurt/spasm more where the colon makes its
turns, with the lower right, upper and lower left being the worst, and,
for whatever reason, right under the belly button, I think maybe because
the rectum and bladder and uterus put pressure on each other, especially
if one is full. I often cannot distinguish gas, the need to potty or the
need to pee - I just have to get to the restroom and take care of
something and then the pain goes away. Eating a high fiber (lots of
fruits and veggies, beans and brown rice) has been essential for my
well-being. For those who do not eat very well, a fiber supplement
should be investigated (Citrucel is said not to cause the gas that
psyllium (Metamucil) can, and that gas really can be painful!).
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I had to reply to this one... when I was 17 I had the same problems and
tests run with the doctors telling me that on paper I was healthy. I
have to ask, have they done a urinalysis? With me it was a kidney
infection that didn't show up until a second urinalysis. When kidney
infections get real bad the pain can be in the front- initially with me
they thought it was appendicitis. If it does turn out to be a kidney
infection I strongly recommend you get her some Cranactin. It's a pill
that works better than trying to drink a bunch of cranberry juice
(especially when you're already nauseous) and can be found in most
vitamin and health food stores. You could even start her on it and see
if after a few days she's feeling any better.
It certainly won't hurt. Good luck... I won't ever forget how nauseous I
got every time I laid down.
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* Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *
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