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I posted the following a couple of days ago:
I may or may not have Celiac Disease. My blood tests were
inclusive (see below) and my biopsy was "consistent with" CD.
I have now been gluten free for 5 weeks; after 6 months I'll
have a second biopsy.
I would be much happier with gluten deprivation if the blood tests
offered stronger evidence of CD. Here were the results:
Gliadin IgA Ab: negative
Gliadin IgG Ab: strong positive
Reticulin Ab: negative
Endomysial AB IgA: negative
I quoted an article which said that IgA class anti-endomysial
antibodies are found in essentially 100% of patients with active CD.
I received about 30 responses. These were extremely helpful, with
most describing similar experiences and encouraging me to go
with the biopsy rather than the blood tests. I didn't reply
to these emails, so let me do so collectively here. Thanks
so much! You've made giving up gluten a lot easier.
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Hmmm, I have heard statistics showing that even the anti-endo. tests
miss cases- 100% is not accurate! The test I have heard is most
accurate is the human anti-tissue transglutaminase test - the new one
they have at the University of Maryland. Celiaccenter.org - but
even they don't claim to be 100% accurate. The " gold standard" is
still biopsy - are your symptoms improving after several months GF,
and do your villi look healthier on your 2nd biopsy? I know going GF
seems awful right now, and it will for a while - it takes a good year
to learn the diet- once through all the seasons and holidays. But you
CAN do it! It is frustrating that the diagnosis is not more black and
white, but be patient - stick to the diet and see what the next biospy
says. Also keep a food diary and note your symptoms on it. I hope
you feel better soon. Good Luck.
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I think the bottom line is, do you feel better living GF??? That is
the third part of the diagnostic triad ... positive blood work,
positive biopsy, positive response to the Gf diet. Now, if you have
still been getting gluten, it does not work. And it takes a year,
usually, to get over feeling "deprived" ... because within that year
you will have found all manner of wonderful gf substitutes for the
things you gave up ... with the plus of feeling much better!!
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I had a similar problem. I had weak anti-gliadin (IgG and IgM
antibodies), and the others were negative. My biopsy was also negative
(although I had been on a gluten-free diet for months before I had the
biopsy). However, many of my blood labs were abnormally low,
especially ferritn, and I had anemia before a gluten-free diet. I
felt run-down, depressed, and couldn't think properly, along with
muscle weakness and leg cramps. As soon as I went on the gluten-free
diet, my labs returned to normal, and I felt 100% better. I feel it
is more important to rely on how you feel that what the lab tests tell
you. My diagnosis was made based on the fact that all my labs
returned to normal, some dramatically so. I will glady stay
gluten-free if I feel much healthier.
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If my biopsy had come back with your result, I would consider myself a
person with celiac disease and go from there. Everyone's tests are
different, but if it was "consistent with CD", that would be good
enough for me. I would go gf for good.
Do you feel better off gluten? It does take time to heal. I didn't
feel better for at least 6 months.
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Your GI doc is right. In spite of what that Sprue-Nik press says,
those blood tests are well known for showing from 20 to 50 percent
false negatives, according to the lab that does the tests and whether
you had been eating GF for even a short period prior to the testing. I
can send you a list of the handful of labs in the US that are
competent to evaluate these tests if you'd like. The evalutation is
complex and most labs just haven't had the instruction and experience
to do it right. The biopsy is considered by almost everyone to be the
gold standard for testing for CD. But even the biopsy can return false
negatives, according to the lab in question and whether or not you
may have been eating GF for even a short period before the test. A GF
diet invalidates all these tests. But neither test is likely to return
a false positive. I've never heard of anyone who tested positive for
either test and later found out they were not a celiac. You can pretty
well take your results to the bank.
This response included a useful but lengthy previous posting which
I have placed at http://wings.cs.appstate.edu/mh/biopsy.html.
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all i know is that my son (our family's celiac) had ALL negative blood
work, yet his biopsy showed villous atrophy which was suggestive of
celiac disease as well. 6 months after going gluten free his biopsy
was normal (though he is not yet asymptomatic, still a puzzle there).
i am not 100% comfortable either, because i don't have a piece of
paper that definitvely tells me it is celiac and nothing else, but i
don know that on the gluten free diet he has had a reduction in
symtpoms, and has started gaining weight (after also eliminating
casein, milk protein) and is again inching up the growth charts. i
guess that since a healthy child is what we wanted, and the "probably
celiac" diagnosis is what we got and is working for him, that will
have to do. I attribute the lack of conclusiveness on the mediocrity
of modern medicine, not anything speicific to my son. if GF helps,
then you are gluten intolerantiliac. if it doesn't help, then you
aren't. easy as that.
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You could have the stool test offered by FinerHealth.com- it may detect
antibodies sooner than they appear in the blood stream.
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How do you feel?
If you are feeling much better I certainly wouldn't be bummed out
about being GF. What really counts if the way you feel.
You might try Dr. Kenneth Fine in Dallas (he has a web site). He has
a stool test that he claims to be much more specific and he says more
definite.
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Seeing as you're positive to blood work (some) and biopsy then I would
definitely say you have CD. I was positive only to some blood work and
negative to the biopsy, and I live as CD...Yes, there is a question in
my mind...but recently, my son was diagnosed with CD...so I
know...that I must have it as well. I think, if I were you, that I
would go on a GF diet. A biopsy in 6 months won't prove anything.
Also...you may not be in active CD as you said.. meaning that you aren't
showing obvious signs of villous atrophy (flattening villi)..OR...your
dr may have taken too few biopsies (which was the case with me, we
believe). The dr should have taken 5-7 biopsies as CD can be
"patchy"...but only took 1.
I wish I had more to offer...Incidentally..I've done all kinds of
research on what these mysterious other conditions might be that have
high IgG levels...and I have yet to come up with any...I have heard that
IBS can give positive IgG results..but have not seen any documentation
on it..(and believe me, I have looked). Regardless, CD is the only
condition that I have found that shows positives for IgG....
If your symptoms improve while on the gluten free diet...then you
should stay on it....Mine have dramatically..and have improved even
moreso since I've become a lot more strict because of my son.
I hope this helps you...of course...I think there's always that element
of doubt...maybe I'm wrong, maybe the drs are wrong...whatever...but if
YOU feel better..then who cares what they think...that's my philosophy
anyway..besides, you wouldn't be unfounded with positive bloodwork and
biopsy.
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If you have a biopsy after being Gluten Free, you will automatically
get a no celiac disease diagnosis. You must be eating Gluten to show
a positive.
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The biopsy is the gold standard for CD diagnosis. I would be sure
that you had it if the biopsy showed that you do. If you would like,
you could probably get the slide and send it to Dr. Alessio Fasano at
University of Maryland and he would probably give you a second opinion
about the biopsy. His web site is www.celiaccenter.org. Good luck!
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As you probably already know, blood tests are not 100% accurate. I
have a question about your biopsy...what exactly does "consistent
with" CD mean? Villi damage? How extensive? Did you have symptoms?
When I was diagnosed 8 years ago, blood tests were even less accurate,
but the biopsy showed totally flattened villi. I had severe diahrrea,
weight loss, dehydration and malnutrition (no wonder I ended up in the
hospital). My doctor, as many do, feel the biopsy is the ultimate test
for CD, not just blood tests, at this point anyway.
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I had the same results that you did. When I went for another opinion,
the doctor said that some people who have CD also have an IGA
deficiency. You should have a serum IGA test ran. That is what I am
going to have to do. If you have the IGA deficiency then the IGA test
for CD would probably show like ours did.
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I can only tell you that in our family--we are three adults and one
child who had negative blood tests (except the 5 year old who had a
positive IgG). The biopsies were all positive. We also all saw a
resolution of symptoms when on the GF diet. Has your doctor checked
your total circulating IgA level? Many celiacs have deficient amounts
of this globulin or levels that are too low to make any of the IgA
serologies positive. It would seem that with a biopsy report such as
yours, you are a celiac. The diet can be difficult to live with, but
truly you will be eating healthier when you follow it. We now eat
more fresh fruits and vegetables, etc. and much less of the "junk"
stuff. Good luck with your diet and hopefully in 6 months you may have
adequate proof of your diagnosis, however with my little granddaughter
it took longer than 6 months for the IgG to come down to normal. This
is the last serology to normalize and in your case it is your only
abnormal one.
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If you are positive in the IgG and not the IgA, then you could be IgA
deficient and none of these type of tests would be accurate. The
endomysial test is IgA so this would be useless for you if you are
deficient in IgA. The IgG test supposedly picks up Celiacs as well as
everything else, such as food allergies, other illnesses, etc. All my
kids were positive for IgG, but the two who were biopsied did not have
Celiac.
If you were biopsied, and showed signs of Celiac, make sure your GF
diet is very strict before being biopsied again and if there is
improvement, then there should be no question of your diagnosis.
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