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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