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

Thanks so much to everyone who responded.  Some responders indicated there is no such thing as intolerance - if I can't tolerate
gluten then it's celiac and i will never recover.  Some indicated that they were like me - tested negative but still feeling
improved health not eating gluten and considered themselves just intolerant. (this gives us the hope of recovering).  It's really up
to each of us negative testers to decide which road to follow.     Some also reminded me that you must be eating gluten for the
proper test results (and I had been).

I'm including the details of the responses below.  It's long!

Thanks again and I hope my summary helps some of you!
Shari in Trooper (Valley Forge) PA

------------------------------------------------------------------------------------------------------
NEGATIVE BLOOD TESTS BUT FEEL BETTER GF.
My blood tests and biopsies for CD were negative. Test for lactose
intolerance was a strong positive. Also feel much better on a GF diet.
After about two years GF/LF, i have started eating foods with lactose and
have no problems now. This is a typical response for CD after the gut heals
since the enzymes that digest lactose are produced at the ends of the
villi. My doctor would say I don't have CD. I will continue maintain a
stricly GF diet, however.

<< I have tested negative for the three blood tests for CD...
I have been gf for two years now anyway b/c I feel better without it... >>

I, too, am glad to find I'm not alone in being non-celiac but very gluten-
intolerant! We'll hang in there. Maybe we should found a group. We could call
it Intolerants Anonymous! In our spare time, right?
happy gf living...

Having wheat and dairy intolerance does not mean Celiac in the
classical sense, but you'll have to observe the dietary restrictions
anyway. Welcome to the club of us who have an intolerance, not
the classical disease, but have to go the whole route as if we did.
I cannot tolerate gluten and do not have celiac. My blood work was
only slightly positive in IgG, normal on the others. A biopsy after 2 months
gf was normal. But I can't cope with eating gluten.
(One of my kids was diagnosed with celiac 8 years ago, so I recognized the
symptoms and knew how to eat gf.)

I feel wonderful so long as I don't oops on gluten, and am very sensitive to
small amounts. The doctor says I don't need to worry about damage to my
intestines or system generally since I don't have celiac. He says I should
just keep comfort level as a guideline.
I doubt the wisdom of that approach, and consider myself absolutely gf.
Besides, that's where my comfort level is.
somesaid celiac and gluten intolerance is the same thing, while others (like you
and I) said the opposite--that one could be lguten intoleranct without being
celiac, per se. And no one had any definitive references. I wish I knew
how to copy each email onto an outgoing email, then I'd send them to you.
But, really, I know the same now as before I asked the question.
What I find interesting about your most recent post to me is that you TOO
were into healthy diet--whole grains, etc. Were you vegetarian too and/or
low fat?

I am exactly the same -
>all tests negative but after 2 yrs GF I can still really tell when I've
eaten Gluten...
>
> My IGG, IGA and endomysial studies were normal; yet I'm a different
>person when I'm g.f., in a big way!
If you are blood type O, then what you are experiencing may not be celiac
but rather sensitivity to wheat and dairy according to your blood type.
See Eat Right 4 Your Type by Dr. Peter J. D'Adamo. ISBN 0-399-14255-X. Good
Never been told that; only that the only way to know for sure is a biopsy
(done through endoscopy). GI said blood tests are not enough to go on.

TESTS NEGATIVE BUT CONSIDERED CELIAC
I just wanted to quickly respond to your posting about a person being
told that they have celiac disease just because they cannot tolerate wheat or
lactose. I was diagnosed with celiac disease a year and a half ago by a
certified gastroenterologist without having an intestinal biopsy done. I had
an anti-gliadin antibody test done prior to seeing this doctor 11 months
earlier with an elevated antibody level as a result. I need to mention that I
was without adequate medical care at the time because the military doctors
kept telling me that this illness of mine was all in my head. I had this test
done by a GI doctor I had seen many years ago while vacationing in NY. I
wasn't there long enough for follow up care.
To make a long story short, I came within two minutes of death after a
traumatic pregnancy which ended in a preterm delivery of my son. I only
gained nine pounds during the pregnancy, and the baby was 6lbs, 1oz. In the
following month and a half my weight dropped 37lbs. At my lowest weight (when
I stopped getting on the scale in fear) I weighed 98lbs. I had never weighed
under 129lbs at my thinnest point in life!
At one of my son's doctor visit I happened to mention to his Dr. the
problems I was having and how every other physician in the military looked at
me like I was a mental case. I told him how I had put myself on a gluten
free diet for the previous 11 months and was feeling much better. He agreed
with me that I needed another "look over" with someone who gave a darn. The
anti-gliadin antibody test was rerun and the antibody test level came back at
0! He consulted with the base GI who also happened to be the commander of the
Air Force hospital. He told my doctor without ever seeing me that I had
celiac disease based on the fact that my antibodies disappeared after being
gluten free. My B-12 level, carotene level, fats and folate levels were also
low. This was due to lack of absorption by the damaged villi in the small
intestine. He thought that my body had been through too much with the
pregnancy to do a gluten challenge. I wasn't too willing anyway!
After being gluten free now for a year and a half I still am lactose
intolerant. I'm not one of the lucky ones who this goes away when the villi
heal. Oh well, I hope my story helps a little. Sorry it is so long! Good
luck to you!

I am wheat/dairy intolerant, and also a dignosed DH
(like CD but with a rash)
One point I would make is that you could be gluten-
intolerant and test negative to Celiac tests. When you
have DH for example, the CD tests are negative, but a
skin biopsy is positive.
My advise .... stay gluten-free ... do you really ned that diagnosis?

I have read here that Dr. Murray of U of Iowa fame believes that lactose
intolerance, as opposed to an allergy, is so unusual in people of Northern
European ancestry that he automatically looks for celiac in people who present
with lactose intolerance. He often finds it, even if there were no other
symptoms. His article, summarized by Jim Lyles I believe, should be searchable
in the archives. Good reading. Good education for doctors!

GENERAL INFO
I haven't been told this by a physician, but when I was first diagnosed, I
looked up the cd on a cd-rom called the Family Doctor, which came with my
Macintosh computer.  It said that there are 2 types of cd - one where all you
are intolerant to is gluten, the other where you are intolerant to galactose,
indicated by both intolerence to gluten and lactose.  I'm not sure if this
manifests itself the same as in just gluten type cd.  However, the cd-rom said
that a diet low in sugars (and containing mostly simple sugars) was in order and
that all dairy and wheat products would need to be avoided.  Perhaps if you went
to a GI with this knowledge, it might help?

NEED TO EAT GLUTEN FOR BLOOD TESTS.
I guess the first thing to ask is, were you gf when you had the blood tests? If so, then they should have been negative (test are
for antibodies reacting to gluten). Did you have HLA typing done? If so, and it was negative, then less than 1% of celiacs (I
understand) are also negative. Did you have a biopsy done while you had been eating gluten for at least 6 months? We have been told
that it is the only way to truly tell if someone is celiac or not.

I have read several places that a gf diet interferes with the diagnostic tests
for celiac disease. So, you might have celiac disease, but the tests came
back negative because you had no gluten in your system for the tests to work.
I am waiting to see a gastroenterologist to be tested for celiac, and I read
that a person should be off of the gluten free diet for 3 months to 6 months
for the tests to be accurate.

>I've heard that being GF can throw off the results of the blood tests. You
need a six month gluten challenge to achieve a positive blood test.
Personally, I don't believe it's worth it to do the gluten challenge just to
get positve blood tests or biopsy. If you feel better without gluten, I say
that is reason enough to say you're gluten intolerant. I'm not a doctor,
that's just my personal opinion. I believe I'm celiac, but that's not my
official diagnosis. My doctors poopooed the idea of a GF, dairy-free diet
being of any benefit to me, but I know better.
If the blood tests were taken after you were gluten free for two years, then
they would not be accurate. If you were not gluten free when they were
taken,even though they were negative, if you had symptoms, then the doctor
should have still done an endoscopy to check for sure.

GENERAL HANG IN THERE ADVICE
What our doctor says is: don't worry about a "name" unless a firm diagnosis can open doors to a treatment you may not otherwise
access. You are the only one who can tell what makes your body feel good or feel awful. And yes, you can have multiple intolerances
and not be celiac (just sensitive) - just like people can have multiple allergies - or just one. Good luck (and don't let cranky
doctors, or others, with bad attitudes get you down)!!!