🚀 go-pugleaf

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

I hope the list can help me decide what my next steps should be in finding a
diagnosis.  I
underwent an endoscopy and biopsy on January 16.  I saw the gastroenterologist
for the
first time one week before the biopsy.  I had been on a modified neanderthal
diet for five
months before the biopsy (I had continued to eat dairy products and a few
other foods).  I
had first gone on this diet because I was having severe muscle spasms and
other
neurological problems which I thought might be food-related.

I asked the gastroenterologist if I didn’t need to go back on grains for some
period of time
before the biopsy.  He told me that he had quite a bit of experience with
celiac and that it
is so hard to be gluten free that I didn’t need to worry -- if I had celiac,
it would show up.
He said that even if I was eating mayonnaise I was getting gluten.  I had, in
fact, continued
to eat mayonnaise, so I figured he must be right and went ahead with the
biopsy. I did,
however, decide on my own to eat wheat and other grains during the week before
the
biopsy.  In fact, I challenged myself pretty aggressively and had some
episodes of sickness
but, truthfully, wasn’t as sick as I expected to be.

Five days later I got the results back -- no sign of celiac.  After I heard
the results, I
figured there was no need for me to be extremely careful about what I eat as
long as I was
not getting sick.  So I went back to trying to eat normally.

Two weeks into this routine, I began to fall apart.  I have developed severe
bloating with gas and diarrhea,  I have had bad abdominal pain but even worse
back pain
-- in fact the back pain feels like a ruptured lower-back disk.  I have been
unable to stay
awake during the day, like I was under the constant influence of a sedative.
My skin has
broken out -- including patches of pimples on my arms and elbows.  The inside
of my nose
has broken out in sores.  When I wash my hair my scalp itches so badly I want
to pull my
hair out.  And, the muscle spasms that had gotten better with a low
carbohydrate diet are
back in full force.  I feel absolutely terrible!

I asked my primary care doctor if, perhaps, I should have been on grains
longer before
having the biopsy done.  She said that, in her view, the gastroenterologist is
very capable
and she would not presume to second guess him.

I looked through the archives of this list and have found several references
that say one
should be on wheat/gluten for at least four weeks before having the biopsy.
Now I am left
questioning whether the test was valid.

Obviously, I am not going to get anywhere with my primary care doctor and to
go around
her to get a second opinion means I pay BIG out-of-pocket costs.  I am so
frustrated.  I
have been sick for quite a while with these neuromuscular problems and I
definitely need a
diagnosis.

Here are my questions:

1.   Is it possible that the symptoms I am currently experiencing are not
celiac-related but are
signs of a wheat intolerance?

2.   Are there any reliable tests for a wheat intolerance?

3.  Should I push for another biopsy, even if it has to be at my expense?

In advance, thank you so much for any advice you can give me.  My family and I
are just
about at wit’s end with the medical profession.

Brenda

* Support summarization of posts, reply to the SENDER not the Celiac List *