<<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
Visit the Celiac Web Page at Http://www.enabling.org/ia/celiac/index.html
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