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I have just had a biopsy that turned out negative.  I'm wondering if I
had it too soon.  I spent several months experimenting with eliminating
gluten and reintroducing it on occasion, trying to determine it my
problem was just wheat or all gluten.  It appeared to be all gluten.  In
preparation for the endoscopy I ate something with gluten every day for
four weeks, but nowhere near the quantity that I had eaten previously.

My symptoms have never been severe, but during the four weeks the longer
I ate gluten, the less it bothered me, as if my body was building up a
tolerance for it.  (The rash on the back of my head and neck did not
abate and is only now - when I'm  gluten free - going away.)

I'm not sure what to do now.  Do I go back to eating lots of gluten as I
did before and have another blood test?  Or do I just stay gluten free
and forget about a diagnosis?

Also, I have noticed that most people have a panel of blood tests.  My
doctor ordered only the IgG (which came back negative).  Is that sufficient?

Any help anyone can give me would be appreciated.
_________________________________________________________________
Thanks for all the responses.

Two people suggested I get my rash biopsied for DH.  However, it doesn't
seem at all like the descriptions of DH that I have read.

Several thought it was best not to worry about testing and just go gf.

One suggested getting a name of an experienced doctor from a support
group, but unfortunately there are no support groups here.

Here are some comments (the last one is particularly interesting to me -
suggesting that there is a gluten intolerance that could possibly precede
CD).

My son only did the challenge for 6 weeks (after being GF for a couple of
months). His biopsy was negative, too. However, we have absolutely NO
doubt that he cannot tolerate gluten! (He is also lactose intolerant, his
test was positive for that). The MD said, "avoid gluten, avoid lactose."

If you see improvement when you eat GF, that is proof enough! We still
feel a little uncomfortable with the negative dx because the challenge
wasn't long enough in our opinions, but we are not uncomfortable enough to
go through all of that again. I told the GI when he starts doing the
rectal test, which doesn't involve a challenge and isn't as invasive as
the biopsy, we'll be interested!
_______

What happened to me was that a year ago I went on a lowered carbohydrate diet
that was low in grains, and I had a dramatic response to it, in terms of
energy levels and also elimination of gas and cramping that I had never
really thought that much about, just figured it was "the way I am".  But
I felt like a magic wand had been waved, the difference was that
dramatic.

It wasn't until 6 months later that I heard of celiac disease and decided
to do some experimenting.  I determined that I did react to gluten and I
started eating some each day, (although later I found out that in my
attempts to keep my carb intake low I had relied partly on a
sprouted-grain bread which is naturally LOW in gluten...arrrrgh!).  At
the end of 3 months, I had blood tests done, which were negative.  I was
told (by my primary care MD) that I didn't have celiac disease, but if it
made me feel better not to eat gluten, I should, so I went on a GF diet.
Now, a few months later, I do feel better,
but the lack of a diagnosis is nagging at me.  I've had a lot of emails
with my doctor, but he basically refuses to refer me to a
gastroenterologist, saying that the test would have showed if I had a
problem, never mind that it had been 9 months since I was on a regular
diet.  ("It takes years for your IgG to go down to normal".)

It has now been almost a year since I was eating a high gluten diet.
Part of me is really really bugged that I don't have a diagnosis, and
part of me just wants to continue on this path of feeling good and forget
the medical profession.
_______

I never had a biopsy,,,,,, in fact, after 3-4 weeks of gf diet, my IgA
was still significantly positive, so they ruled out the need for a
biopsy, and quite frankly, I refused to undergo an endoscopic procedure
again.

As far as building up a tolerance to gluten, to me it makes perfect
sense.  The longer I've been off gluten, the more severe my reactions to
it, so the reverse would seem to be true.  Especially, since for 29 yrs I
obviuosly ate foods containing gluten with no effects at all.
_______

I have not found the testing resources to be totally accurate and would
rather have my children be symptom free than to think they were being
harmed by gluten ingestion just because I haven't gotten a definite
diagnosis.  Sometimes you just have to do what you think is right for you.
_______

For me-the results of being gluten free were enough of a diagnoses.  Any
other tests would be superfluous.  Eliminate, challenge and eliminate in
the diet is a pretty good diagnoses in my skin.
_______

Ask the doctor if he can order the IgA antigliadin antibody test and the EMA
test as these are more sensitive to the ingestion of gluten and they go up and
down more quickly than the IgG.
_______

I'm 30-years old and have never had a formal diagnosis of gluten
intolerance or celiac disease, but have experienced remarkable relieve
from my digestive and other symptoms when on a gluten-free diet, which I
discovered entirely on my own and pretty much by accident.  I've had a
range of digestive troubles most of my life and had been diagnosed with
irritable bowel syndrome by several different doctors.

When my symptoms started to become more intense to the point of
interfering with my life, I decided to explore different ways of dealing
with what was going on.  I started to pay very close attention to what I
was eating and then eliminated things that seemed to make my symptoms
worse.  Pasta went first, then bread, then crackers and cookies, then
raisin bran & cereals, etc..  I was unknowingly living "gluten-reduced"
for quite awhile, before I ever knew what gluten was just because I was
staying away from the foods that made me feel sicker"bread, pasta,
crackers, cereal, etc.  After I learned what gluten was and that it made
some people sick, I went entirely gluten-free for almost two months
before I decided I wanted to pursue a possible medical diagnosis.  I had
a terrible time talking with my doctor about my concerns about wheat
allergy/gluten intolerance/celiac disease, et.al. and trying to convince
her to send me to a GI specialist so that I could have the examinations
and tests that would either confirm or eliminate gluten as the source of
my problems.  (Like all the others, she had already decided I had
irritable bowel syndrome.)

Even though I was feeling much better than I had in a long time and was
even seeing evidence of my symptoms subsiding on the gluten-free diet
(the digestive ones were almost immediate), I was really feeling torn.  I
had an incredible need-to-know for sure whether or not it was the gluten
that was making me sick.  At the same time, a big part of me knew I was
feeling better on the GF diet, so what else should matter?  I decided to
go ahead with the biopsy for my own piece of mind and I had a little over
a month to prepare for the endoscopy procedure.  I went on
gluten-challenge for 4-6 weeks, re-introducing gluten back into my diet
slowly and steadily to minimize the effect it might have.  It was the
most miserable month of my recent life.  I felt so sick everyday, it was
torture.  I was trying to eat some sort of crusty bread or a serving of
pasta each day, but I definitely had some gluten-free days in
there--sometimes two or three in a row--so that I could give my body
SOME relief!  I was missing days at work because I couldn't muster up
enough energy to get out of bed.  I had migraines for two or three days
every week, the joint pain in my knees and back made it hard for me to
walk even ¼ mile without being in agony, my hair was falling out again, I
was having terrible abdominal pain and cramping.  I remember reading that
the gluten challenge required the equivalent of 4 slices of bread every
day, but there is no way I could have ingested that much gluten
and still have been able to function.  Was I not eating enough gluten for
it to have an effect on my villi?  Who knows.  Is it possible that my
villi had the chance to heal in the months I was on the
gluten-reduced/gluten-free diet?  Who knows?  I was lucky enough to have
the opportunity to see one of the few "celiac" specialists in the
country, so I have 90% confidence in his ability to recognize CD as well
as in the validity of the tests he ordered.  When the blood antibody
tests all came back negative for celiac disease, I went ahead with the
biopsy anyway, which showed
inflammation of the small intestine and lymphocytes present, but no
evidence of damage consistent with that of celiac disease.   Needless to
say, I was relieved to learn I didn't have a disease, but in a weird way
I was almost disappointed (I know that must sound HORRIBLE!).  Still,
when I got the news, I celebrated by treating myself to a huge chunk of
crusty bread.  I was sick for two whole days!!!!  I was so upset for
doing that to myself, because I already KNEW that I couldn't eat bread
without getting sick, but kept telling myself that I SHOULD be able to
eat it, because I was tested and I DON'T have celiac disease.  I spoke
with my GI about this and he suggested the possibility of other intestine
problems (Crohns, colitis, etc.), many of which have the same or similar
symptoms as celiac disease.  I went ahead with the tests for those, and
guess what, also, negative.

I almost wish I hadn't learned about celiac and the gluten-free diet
before seeing my doctor, because part of me feels like I may have forever
sabotaged my own chance at an official diagnosis and any peace of mind by
doing a gluten-free trial on my own.  Living gluten-free can be pretty
tough and sometimes it's difficult for me to muster up the motivation to
be gluten-free without having the cd diagnosis.  But everytime I cheat
(which I do less and less these days) I know for sure gluten is the
source of my problems.

There is no doubt in my mind that gluten effects my body "for the
worse" whether I have villi damage that shows up on a slide or not.  It
used to be very important to me to have a definite diagnosis.  I wanted
so badly for someone to tell me I wasn't imagining all my symptoms and
that I wasn't just this stressed-out person who needed to "take it easy
once in a while."  No one can tell me I don't feel better, have more
energy, think more clearly, that my hair isn't growing back, etc. since I
have been on a gluten-free diet.  (I even keep a picture of me during my
hair-loss phase near my refrigerator to motivate me to stay GF.)  I stay
gluten-free just because I want to be well, which now is a completely
fulfilling enough reason for me.  Sure, it's difficult to explain to
people why I voluntarily stay on a diet that seems so restrictive without
any medical basis to back up my decision.  I tell them I listen to my
body^Åand that I'm the one who knows how to "treat" my body best.

I have corresponded with several people on this list who, like me, are
non-diagnosed" (had all the tests done with no definite diagnosis) who
speak of gluten intolerance as something akin to celiac disease, but
without the villi damage"which I believe is the fundamental part of the
medical definition of celiac disease.  I have read literature that
suggests "benign(?)" gluten intolerance is a condition that presents
before the onset of celiac disease and that a percentage of people who
are gluten intolerant may go on to eventually develop celiac disease.

_______

Thanks again to all of you who responded.  I'm going to do some more
experimenting with my diet (eliminate, challenge, eliminate) and perhaps
forget about doctors.

Pat