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

>Thank you VERY much to the many people who responded. It is a 
>delight to find you!

If anyone would be interested in writing an article about the 
psychological effects of gluten intolerance or celiac's disease, 
please see the link to my selfhelpmagazine.com below. If you like 
what you see and can submit something with references to scientific 
articles to back up your claims, we'd be happy to review for 
submission. It seems important to get the word out and we get over 
500,000 visitors per month at that website and many of our readers 
might be suffering from celiac's and not even know it.

Here is my summary of the comments received.

1.      I was diagnosed via biopsy 3 years ago (at age 42).  Luckily 
for me, my Dr. didn't do a blood test first, because it was 
negative!  He had me do the blood test immediately after my 
diagnosis, just to "round out my chart." So...just to confirm that 
the blood test can't rule you out!
2.     You may not have celiac disease which would explain your 
negative testing but may have an allergy to wheat or other 
grains.  By now omitting these grains your physical symptoms would 
improve. Additionally, it has been found that some labs are  more 
precise in their testing and results are varied even with identical 
samples. Many commercial labs yield less reliable results.  U. 
Maryland, Specialty Labs, Prometheus Labs are three that have been 
found consistently to have reliable results.  Many commercial labs 
are much less so. Additionally, you state, after the negative testing 
you continued on a gluten free diet.  The GF diet would invalidate 
your original testing if you had been following it for a period of 
weeks prior to the blood tests.  The antibodies begin to disappear 
when the cause is removed. So, if I understand your posting......you 
may or may not have celiac disease.  No diet should be begun before 
testing has been completed.
3.      In my reference notebooks, compiled mostly from this 
list/serv, the index shows the following postings about negative 
blood work. You can access these through the archives. the dates are 
7/21/2001, 3/7/2003, 7/17/2005, 10/11/2005, 11/4/2005, 8/11/2007, 
9/2/2007, 12/2/2007.
4.      think it's still fair to say that the diagnostic tests for CD 
should be regarded with some wariness. False negatives are common. My 
situation here in the UK was very similar to yours. Fortunately my 
doctor was one who was well up on CD. He diagnosed the spots and the 
rashes I was getting as dermatitis herpetiformis - the form of CD I 
get - before any tests and put me on a GF diet. Within two or three 
months my skin had totally cleared up. Only then did we have a blood 
test done - it came back negative. He shrugged and said, 'With a 
normal diet you get the spots and the rash; on a GF diet it all goes 
away. You have CD despite the tests.' Maybe that's some re-assurance.
5.     I'm not Celiac but have undergone allergy testing and am 
allergic to wheat. You might want to pursue allergy testing with an 
allergist to see if you're allergic to wheat or even allergic to 
gluten. You might also be wheat intolerant which won't show up in an 
allergy test. Just some ideas.
6.      First, the disclaimer:  I have absolutely no medical 
training. (Not even a Ph.D.)  How "negative" is negative? My blood 
work was "slightly positive" for 2 of 3 antibodies. The GI doc told 
me to quit worrying and go home. I didn't have celiac. However, 
because my son had been diagnosed by biopsy several years previously, 
and I felt terrible, I went gf anyway. I was surprised by how quickly 
I felt better. I hadn't realized how terrible I felt until I began to 
get relief. That same doctor did a biopsy to "make you go home and be 
quiet". He took only 3 samples and all were "negative". That was 11 
years ago. I've been gf ever since and if I make a mistake, I get 
sick. After several years gf, I wanted to repeat the blood work to 
see how effective my diet was. The doctor consulted her GI colleagues 
who said, "She was tested. She doesn't have celiac. If she's 
gluten-free, the tests will be negative anyway, so what's the point?" 
Shortly thereafter, I changed doctors. I asked the new doctor if one 
negative mammogram meant I never had to have another mammogram and 
she repeated the blood work.  I was still making antibodies but at 
much lower levels. I cleaned up my diet further, repeated tests after 
a year, and was clean. My health continued to improve. Recently, I 
developed psoriasis and psoriatic arthritis, two inflammatory 
diseases. I'd read about the gluten-free / casein-free diet and its 
benefits for Autism, among other things. I remembered that  I felt 
wonderful years ago when I went on a diet that was restricted to 
low-carb fruits and vegetables, no grain, zero dairy, and therefore 
by chance, almost completely gluten-free. So I am eliminating casein. 
Day 5 and I feel exhausted, but the psoriasis, irritable bowel, and 
food cravings are abating. I'm hoping the arthritis will stop 
progressing, too. I take calcium and high levels of Vitamin D, as my 
D levels were close to zero. They've come up quite a bit. It's all 
very exciting! My doctor and I figure I have gluten intolerance that 
is expressed in ways other than the specific intestinal damage that 
is called celiac. There is no money in proving a causal relationship 
between food and celiac, psoriasis, irritable bowel, migraine, or any 
other chronic condition, but there is a lot of money in treating the 
symptoms. So I will not hold my breath waiting for clinical trials 
into food intolerance and disease. I hope this helps. Good luck with 
your symptoms and testing!
7.      Hi -  My mom was diagnosed by endoscopy 21 years ago.  I had 
blood testing in 2000 and again in 2003, along with endoscopy in 2003 
that came up negative.  However, after accidentally not eating any 
wheat on the day I took my mom to a celiac support meeting, where I 
ate only gluten free snacks, I got a wonderful surprise.  The next 
morning was the first morning I felt half-way decent in years.  I 
continued the gluten free diet and in three days, my stools totally 
changed back to normal.  My gastroenterologist said that with such a 
good reaction to the diet, I should stay on it.  Tests are not always 
right.  It was funny, two weeks into the diet, I forgot what I was 
doing and ate a piece of birthday cake.  I was so sick the next day 
and I had brain fog big time.
8.      I read somewhere the other day where they think sometimes 
direct relatives of people with celiac can be extremely sensitive but 
not 100% celiac.  Think that is why the diet makes such an 
improvement. So - bottom lline - if you are feeling better, stay on 
the diet.  It is a healthy diet and you will probably have no problem 
staying at a healthy weight.
9.      You can have a negative blood test and still have 
Celiac.  The gold standard is the biopsy of the small intestines, 
with 6-12 biopsies taken. You may not have Celiac, but a wheat 
intolerance instead. You might be interested to know a milk allergy 
will react the same as Celiac.  It will cause gas, bloating and 
diarrehea and will blunt the villi. I would say if you feel better on 
the GF diet, stick with it, why go through the pain?
10.  There is a website devoted specifically to your situation.  It 
explains and has diagrams, 
etc.   <http://www.glutenreactivity.net>www.glutenreactivity.net
11.  Pretty simple- you can be intolerant of gluten but not have 
celiac disease. It is a food reaction but not celiac disease. I would 
put you in the category of "non celiac gluten intolerant". I see this 
in patients very
frequently-- negative bloodwork but obvious improvement on the diet. 
I consider this proof that these patients should avoid eating gluten.
12.  Some possibilities to explain your better health when eating 
gluten  free combined with your negative test result:
(1)  The test was inaccurate.  Sometimes the blood test is inaccurate 
if you were already eating gluten free for a while or if you are 
IgA  deficient.  The endoscopy can be inaccurate if they happen to biopsy
a part of the intestine that is undamaged (sometimes the damage is 
in  patches, not everywhere).
(2)  The test was accurate but you are gluten intolerant and 
don't  have celiac sprue.  Frankly, I am not sure what gluten 
intolerance  means, but I assume it means that you can't properly 
digest gluten
and have resulting digestive and other health problems.  According 
to  Dr. Fine, many people have the genes for gluten intolerance.
13.  Blood tests are only about 75% accurate.  I know of someone w/ a 
negative blood test AND negative biopsy who was still diagnosed 
advanced celiac with a PillCam as the damaged part of her intestine 
was far below where the endoscope could go. Or, you could be just 
gluten sensitive and not celiac.
14.  If you REALLY want to know whether or not you have gluten 
intolerance or even celiac disease, then I'd recommend a stool test 
from www.enterolab.com
or even an endoscopy. But if the diet is helping you, Dr. Fine would 
say, "Then assume you are at least intolerant and avoid gluten." If 
you feel better by avoiding gluten, then stay away from it.
15.  You may not have Celiac Disease but have either an allergy or an 
intolerance of gluten. I have Celiac and my relief of symptoms was 
very similar to yours. In both allergies and intolerances the  small 
intestines (Mucosa)is not attacked and destroyed. I lost some 30 
pounds and I am a small man. Since I began my gluten-free diet, I 
have regained seven pounds.
16.  There are possible false negatives with the blood test.  The 
only way  for a true diagnosis is to eat a high gluten diet for 4-6 
weeks and  then have an endoscopy with a biopsy of the small 
intestine to see if  there is damage to the villi.  Otherwise, if are 
feeling better on  the diet, and symptoms are improving, you might 
consider just staying  on the diet.  You would want to follow up with 
your doctor to make sure that there are no other underlying physical 
problems. Or you could have genetic testing done to see if you carry 
the DQ2 or  DQ8 gene.
17.  because apparently serology isn't All.  The gold 
standards:  genetic testing, Prometheus Labs.  Just below the gold 
standard:  an exhaustive biopsy with good md and good 
lab.  Also:  consider possibility of gluten sensitivity.  (Might as 
well be celiac).
18.  The only place you can get an accurate test for Celiac and 
Gluten Sensitivity in my opinion is at Enterolab. It is much more 
complex than the mainstream medical system is allowing to happen. It 
is about more than one set of genes and it is about more than just 
lesions in the small intestine. At the web site for Enterolab you can 
get a pretty good explanation of it in an essay called "Before the 
Villi are Gone" by Dr. Fine.  If you keep listening to the straight 
up Celiac docs you may never figure out the truth of it.
19.  How about "gluten sensitivity" as opposed to celiac disease?
20.  It's easy, they are finding out there is a group of people who 
are gluten sensitive or intolerant. CD is a smaller sub group of this 
larger group. If you have genetic testing done, with a lab that tests 
for more than the CD HLA DQ 2 and 8 genes, and you have other HLA DQ 
genes, except for 4 I think, you are in this larger group. Entrolabs 
is one lab that does this additional testing. Also do a google search 
on Dr. Marios Hadjivassiliou. People in this group are more prone to 
neurological symtoms than GI ones but the  treatment is the same, eat GF.

  ~
_________________Marlene M. Maheu, Ph.D.
            Editor-in-Chief, SelfhelpMagaine.com
       http://selfhelpmagazine.com

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