<<Disclaimer: Verify this information before applying it to your situation.>>
Hello and a big thank you to everyone who responded to my question. I
received many informative emails. I have summarized them below. Please
note there is couple of responses that report difference in percentages
and/or thoughts on the tests. I also received a couple of attachments
which I have left off this summary. If you are interested in them please
feel free to email me and I will get them to you. Carol
Genetic test: Heplotype test for DQ2 and DQ8
use either www.Enterolab or www.Prometheus labs. Do not use Quest.
Enterolab.com They are in Dallas Texas & do the gene test not only for DQ2
& DQ8 but DQ1 & DQ3. They do a stool test for gluten, soy, dairy & I think
eggs
A caution. Genetic testing. Labs other than www.enterolab.com test for only
the DQ2 and DQ8 markers. Most people with CD will have these but there are
biopsy proven celiacs who are negative for DQ2 and DQ8. No test is 100%
If you want to find out if your children have CD now, a gene test won't tell
you that. All it can tell you is if you have the genes, and the majority of
people who have the genes don't gave celiac.
Don't forget that if the blood tests are negative there is a 75 per cent
chance that they are wrong.
Recommendation - the U of Chicago site. They have lots of information that
you can print and give to your doctor including a handout that explains how
often children should be tested. . Plus Dr. Guandalini is a pedi-GI.
The link is www.celiacdisease.net .
If you take a look at this website - The University of Chicago Hospital has
a
celiac disease program and there is some helpful info on their website.
http://www.uchospitals.edu/specialties/celiac/fact-sheets/index.html
Here are the blood tests to be performed and what each does. Your 3 year
old may have not reaction to the blood testing as he is quit young; unless
he is having major problems at this time. Since they are 1st relatives and
you have Celiac, they should have the blood test repeated every two years.
You could also have them gene tested for the DQ8 and DQ 2 gene. But, if
they have the genes, doesn't mean the they will ever get Celiac. And if
they don't have the genes, they can still get Celiac. (*** one other email I
received said the opposite of this last statement) The gold standard is
still a biopsy of the small intestines.
You can find valuable information at:
www.gluten.net This site has many publications you can copy and carry to
the Dr.
www.celiac.com
www.clanthompson.com
www.csa.com
Celiac Blood Tests
Here are the test and explanation of what they are. There are a total of 6
tests that can be run for Celiac disease.
(1) Anti-Gliadin (AGA) IgA
(2) Anti-Gliadin (AGA) IgG
(3) Anti-Tissue Transglutaminase (tTg) IgA
(4) Total serum IgA
(5) Anti-Tissue Transglutaminase (tTg) IgG
(6) Endomesial Antibody (EMA) IgA
Note that AGA is simply the abbreviation for Anti-Gliadin antibody. TTg is
the Tissue transglutimase and EMA for Endomeisial antibody. Sometimes you
see the letters instead. Because writing and saying the words is a pain.
The tests with IgA test for the IgA antibody in the system. The IgG tests
test for IgG antibodies in the system. The most indicative tests of Celiac
are the tTg-IgA(number 3 above) and the EMA(number 6 above). What is often
referred to as the “Celiac Disease Panel”consistes of the first 4 tests
above. These are the “standard” tests that should always be run to test for
Celiac disease. Number 4-Total Serum IgA is critical to include. This will
tell you if the body is able to produce IgA antibodies. Some people(10% of
the population) can’t produce the IgA antibodies and are considered IgA
deficient. If you cannot produce IgAantibodies, the IgA tests above(# 1, 3
and 6) will not come back positive for Celiac disease, even if you have
Celiac disease. Therefore, you have to reply on the IgG numbers. They
usually only run #5 if Total Serum IgA indicates a deficiency and /or if the
AGA IgG(#2 above) is the only one that is abnormally high. The EMA(#6) is
very sensitive for CD. However, it is a test that is more difficult to
read; meaning that you have to have an experienced lab tech reading the
results or there could be an error. The tTg-IgA
test is more “idiot proof” in the lab and cheaper to do, so it has become
more of the standard instead of the EMA. You can have both done, but it
isn’t necessary.
Guidelines for the Diagnosis and Treatment of Celiac Disease in Children
Learn the key elements the management of children and teens with Celiac
disease. ... Long-term Effects of Celiac Disease Screening and ...
Journal Article, Pediatr Nurs, November 2004
This came from medscape.com where the full text is available.
This is one of the best sites, from Celiac at Columbia:
http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C05-Testing.htm
This is a UK lab site (originally from Australia) but I think it also
explains the different tests quite well:
http://www.tdlpathology.com/index.php?option=com_content&task=view&id=36&Itemid=73
BTW the tests here costs £160 ($300) for the whole lot and genotyping alone
is £90 ($160).
Genotyping can have a good "negative predictive value" ie help rule it
out.It is often most useful in people with symptoms but negative blood
tests, to decide whether to proceeed to biopsy.
One caveat about genotyping the CHILDREN of a coeliac. There are 2 parts of
the HLA - you inherit one from each parent. If, as is likely, you yourself
have the usual "double" DQ2 genotype (shared by 95% of coeliacs and 25 % of
all Caucasians) then inevitably your children will have inherited at least
one "coeliac gene". Although this makes CD much less likely than having both
genes it is still possible - as in my case and that of one of my sons. About
4% of coeliacs have only "one" typical CD gene (ie "half" the DQ2) and about
1% have neither. What I am saying is that it is unlikely you can completely
rule out the genetic risk factor in the offspring of coeliacs whereas
genotyping the parents and siblings of coeliacs can sometimes do that. My
other son has neither so he has clearly not inherited my one gene.
Incidentally, although the tTG and EmA tests are very specific, the
sensitivity of any coeliac blood test is only about 85% ie about 15% of
coeliacs will test negative to antibody tests. Many doctors are not aware of
this. It is very possible to have "seronegative CD" and any child with
symptoms but negative blood tests should have a biopsy before CD is ruled
out. I have good clinical references on this if you want.
If it is an option, I would still advise having both gene and blood tests
(including IgA negativity): it will help determine if either child is at
particular risk. It may be of slightly greater value if you also know your
own genotype. If cost is an issue you might decide to do CD blood tests
first and then only genotyping if they are negative.
It is my understanding that 50% of "all" people have the gene sequence for
celiac. I don't believe they have identified the exact genes in this
sequence that would indicate a sure diagnosis of celiac. Only the blood
tests, biopsy, and improvement on the gluten free diet are the gold
standards for testing.
For more information on the standard testing procedures, please see the
Celiac Sprue Association website at:
http://www.csaceliacs.org/celiac_diagnosis.php
I've also attached a clinical guideline report on the diagnosis and
treatment of celiac disease in children. (****you can find this at the
NASPGHAN site listed below, great resourse.)
Go to Dr. Alessio Fasano's website www.celiaccenter.org (Center for Celiac
Research" and find a "contact me" link. He will answer questions. He would
be the best source for your question. He is an expert in CD and a
children's GI gastroenterologist.
we saw Dr. Fasano (The pediatric expert--U. of MD.) last week with my 2
grandchildren. The first thing we had already done---gene tests-- so we know
they have one or two genes for it. He then said the whole panel of celiac
blood tests should be done, but of all of them the tTg is very
significant.There about 5 of them that they did and if you need I can get
it for you. They can be done by Quest or Lab Corp according to his nurse
although did ours at his office--it takes a week for results.
Have you looked through The Gluten File?
http://jccglutenfree.googlepages.com/
Here are the guidelines from NASPGHAN published Jan 2005.
http://www.naspghan.org/PDF/PositionPapers/celiac_guideline_2004_jpgn.pdf
You may find more info on NASPGHAN's website
http://www.naspghan.org/default.htm
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