<<Disclaimer: Verify this information before applying it to your situation.>>
OK guys, First of all, thank you sooooooooooooooo much for all of you
who responded to my initial inquiry and the addendum. I received some
truly useful info as well as some much needed encouragement/cheerleading :)
OK for the info:
Results on blood tests are varied. Some do indeed have only
elevated IgG, and are later confirmed celiacs. However, there is the
potential to have elevated IgG and not have CD. Here I am dealing with
IgG-AGA, or IgG anti-gliadin antibodies. IgG is an immune system
response to various substances, thus my clarification.
IgG is the principal immunoglobulin in human serum. (I think serum
is the same thing as blood. Someone correct me if I am wrong.)
Obviously it is good to have IgG - against the right things. As far as
I can tell there is little or no evidence of IgM, IgE, or IgD, playing
any role in CD. IgA I'll get to in a minute.
Responses to damaging foods is also varied. From the people on the
list, I had always gathered that most felt sick when they ate the
offending foods, to the point that most of them learned to self-select
AWAY from gluten-containing foods. However, I had read, in my autism
research that there were kids who self-selected to the very foods that
were damaging them, so that is why I questioned my daughters love of
bread. It is from this tendency that the "opioid excess" theory of the
onset of regressive autism comes. Oddly enough, one respondent
mentioned that when on e eats foods that one is allergic to, the body
mounts a response and that in turn creates an adrenaline rush to
compensate, and it is that rush that your body craves, therefore you
desire certain foods because they lead to the "rush." This isn't
exactly like the opioid excess theory, which states that the intestines
fail to completely break down gluten and casein into benign substances
as they do in most of us, leaving them partially broken down. The food
substance is then leaked in to the body, via the leaky gut. normally
this would do nothing more than create autoantibodies to it, however, in
the case of gluten and casein, their partial broken down states are
opioid in nature - gliadinomorphin and casomorphin, with chemical
sequences that are nearly identical to that of traditional morphine.
Thus the child literally gets high when eating these foods, and thus
craves them. And as daily exposure to morphine would result in brain
damage, particularly in a developing toddler, so does daily exposure to
casein and gluten, hence the autism. It clearly isn't the sole cause of
autism, but as evidenced by those children who have recovered from
autism via dietary interventions, it clearly is one of them.
Regarding the former point, many people offered me pointers in the
direction of the many sites and listservs that deal with autism, and
dietary interventions for autism, particularly Karyn Seroussi's article
in Parent's Magazine in Feb. 2000, which is an excerpt of her book ( I
have it, thanks!) written when her son recovered from autism, due to
dietary interventions. Thankfully I have been fairly on top of things
when it comes to researching autism, that is where most of my time has
been spent since my son's diagnoses (autism and CD diagnosed 2 weeks
apart). It is only now, after I am sure that his recovery is definitely
in progress (due in large part to dietary interventions) that I have
allowed myself to focus on his CD - and the possibility that others in
the family may have it as well.
I got a lot of info corroborating that many US doctors are about as
useless as my cat is when it comes to diagnosing CD. Unfortunately, the
truckload of info I had prepared to give to my son's, and now my,
daughter's GI did not get there as I spent that morning dealing with my
(and my husband's) doctor. That was the kicker! WE had requested long
ago that my husband be tested. She said she would have to check with a
doctor she knew, an immunologist before she'd authorize the test. While
I hated being patronized this way, I thought she'll talk to the doctor
and he'll say, yes, have him t ested and that would be that. Well we
got the green light, and they drew blood. A week later we got the call
saying that the lab had made a mistake and would he come back for
another draw. My husband, who has been known to faint at the sight of a
needle coming at him, was a very brave boy and went back in :). While
we waited for those results to come back, we had my daughter tested by
her pediatrician who gave us no hassle. He ordered a tTG based on IgA,
and anti-gliadin IgA and IgG. Her IgG ws sky high and her IgA was
positive. Then we received my husband's results - and they had
performed the WRONG TEST! Grrrrrrr. So we called in, and told the
doctor that not only did he need to be re-drawn again, but I would also
like to be tested. We traipsed in that day only to wait around for the
lab slip no one could find and then have her appear with only one, for
him. It included ONLY testing for IgG. I pointed out to her that this
would not be an adequate diagnostic tool and she told us she isn't
trying to diagnose us, rather screen us. I attempted to give her the
wealth of material I had with me that day for the GI and she refused to
look at it. She insisted that she had spoken to the GI on the floor
above her, or as she referred to him, her "expert" and he had said that
this was all they needed to do. I insisted that at the very least she
allow me to be tested as well, and she angrily provided us with one. We
have since gotten our results, which were negative for IgG, after which
she pronounced us free of CD, and declared that the fact that our 2 kids
have it is a "mutation." On Monday, I'm calling member services of our
insurance company to switch my primary care doctor. I have also mailed
her the info she refused the other day with a nice little letter for her
to peruse regarding CD stats, including the rate of underdiagnosis in
America.
Similar experiences have happened to many others on the list,
unfortunately. According to a 5th year student doctor in New Zealand,
there is much more education given to them there than here. Further he
said they no longer even use the AGA tests due to it's low specificity
and sensitivity. Their standard tests ar the anti-endomysial antibody
(AEA) test and sometimes tissue transglutaminase (tTG). He also
mentioned the lead article in the latest NZ Medical Journal dealt with
the city of Christchurch where 1% of the population is celiac -
specifically the lack of accuracy of the AEA and AGA tests in children
with risk factors. I would love to have a copy of this article. If
anyone can locate a copy, please email me privately so I can obtain it
for myself.
Regarding the specificity and sensitivity of these tests... I will
just copy and paste the info I received from Vance, as it is extensive,
and well worth reading.
ANTI-GLIADIN ANTIBODIES:
Both IgA and IgG anti-gliadin antibodies (AGA) are detected in sera
of patients with gluten sensitive enteropathy (celiac disease). IgG
anti-gliadin antibodies are more sensitive but are less specific markers
for disease compared with IgA class antibodies. IgA anti-gliadin
antibodies are less sensitive but are more specific. In clinical
trials, the IgA antibodies have a specificity of 97% but the sensitivity
is only 71%. That means that, if a patient is IgA positive, there is a
97% probability that they have CD. Conversely, if the patient is IgA
negative, there is only a 71% probability that the patient is truly
negative for CD. Therefore, a positive result is a strong indication
that the patient has the disease but a negative result doesn't
necessarily mean that they don't have it. False positive results are
rather uncommon but false negative results can occur. On the other
hand, the IgG anti-gliadin antibodies are 91% specific and have an 87%
sensitivity. This means that they will show positive results more
readily but there isn't as strong a correlation with CD. It is less
specific. Patients with other conditions but not afflicted with CD will
occasionally show positive results. IgG anti-gliadin antibodies are
detectable in approximately 21% of patients with other gastrointestinal
disorders. This test might yield false positive results but is less
likely to yield false negative results. A sensitive testing protocol
includes testing for both IgA and IgG anti-gliadin antibodies since a
significant portion of celiac patients (approx. 2-5%) are IgA
deficient. This combined IgA and IgG anti-gliadin antibody assay has an
overall sensitivity of 95% with a specificity of 90%. The type of test
used to detect the anti-gliadin antibodies is called an ELISA. This is
an acronym and it stands for Enzyme Linked Immuno- Sorbent Assay.
"ELISA" is not a test in itself. It is a method of testing and it is a
relatively simple test to perform. It involves putting a measured
amount of diluted patient serum into the wells of a specially
constructed and prepared plate and incubating it for a period of time
with various chemicals. The end result is a color change, the intensity
of which is dependent upon the concentration of anti-gliadin antibody
(or other protein being measured) in the patient serum. The ability of
this colored solution to absorb light at a particular wavelength can be
measured on a laboratory instrument and mathematically compared with
solutions that contain a known amount of anti-gliadin antibody to arrive
at a number for the amount of antibody present. The sample can then be
classified as negative, (0-20 units); weak positive, (21-30 units); or
moderate to strong positive if greater than 30 units.
The purpose of testing for anti-gliadin antibodies includes, in
addition to diagnosis of gluten sensitive enteropathy, monitoring for
compliance to a gluten free diet. IgA gliadin antibodies increase
rapidly in response to gluten in the diet and decrease rapidly when
gluten is absent from the diet. The IgA anti-gliadin antibodies can
totally disappear in 2-6 months on a gluten free diet, so they are
useful as a diet control. By contrast, IgG anti-gliadin antibodies need
a long time, sometimes more than a year, to become negative. The
reverse is also true. That is, a patient with CD who has been on a
gluten free diet and tests negative for IgA anti-gliadin antibodies,
will show a rapid increase in antibody production when challenged by
gluten in the diet. Approximately 90% of challenged patients will yield
a positive IgA anti-gliadin result within 14-35 days after being
challenged. The IgG antibodies are somewhat slower.
ENDOMYSIAL ANTIBODIES:
IgA class anti-endomysial antibodies (AEA) are very specific,
occurring only in CD and DH. These antibodies are found in
approximately 80% of patients with DH and in essentially 100% of
patients with active CD. IgA endomysial antibodies are more sensitive
and specific than gliadin antibodies for diagnosis of CD. (This test
uses an immunoflourescent based assay, which is subjective and results
may differ based on the skill and experience of the technician reading
the slides.
TISSUE TRANSGLUTAMINASE:
Recently, (1998) the endomysial antigen targeted by the
anti-endomysial antibodies was identified as the protein cross-linking
enzyme known as tissue transglutaminase (tTG). This has enabled the
production of an antigen specific ELISA assay incorporating tTG as a
reliable and objective alternative to the traditional and subjective
Immunofluorescence based assays. In clinical trials, the correlation
with the endomysial IFA assay has been shown to be close to 100%. This
is a test that has been very well received in the professional
community. It is an ELISA, like the anti-gliadin antibody test and, as
such, is not subject to interpretation like the IFA.
Vance ws also able to provide some info on reliable labs to
have blood tested through, and the University of Maryland study, which
many of you pointed me in the direction of when you referred me to
http://www.celiaccenter.org/ Thank you! I will be contacting them
tomorrow to get the whole family tested.
There was also a lot of mentions about children with autism or
add or ADHD, recognized by many now as on the same spectrum as autism,
just at the highest functioning level. It was nice to hear from those
going through similar behavioral issues as well as similar dietary
issues, especially when one of those people sees a well known and
respected developmental pediatrician for her daughter, Dr. Mary Megson.
it's good to know she is regularly screening her ADD and autistic
patients for AGA, etc. antibodies.
While not every child with these issues has gluten and/or
casein sensitivity issues, many do, and many of those parent s only
learn of it when talking with other parents, and doctors are behind the
times on this.
There were a few mentions of "what 5 year old child doesn't
have bad handwriting?" We just got my daughter's first report card.
Penmanship was a 69% from an experienced kindergarten teacher. So it
isn't just my imagination, but it is true that many parents are overly
critical. Dysgraphia was mentioned and we will investigate it, after
figuring out if there isn't a dietary cause.
Regarding her sensory issues: they are not interfering with
her life, so I am not overly concerned about them, but I think they
might be a part of the puzzle with her, a clue, though not a problem
in itself.
Well, I think I've spent enough time online today (all stinking
day!) so I will end this, but i received a wealth of info, and would be
happy to share any of it with anyone having a specific question. I
saved it all as a Word document so I can forward it to anyone requesting
it. Thank you all for sharing so generously of your time and knowledge.
I will let you know how my, my husband's, and my daughter's results come
out.
Catherine in AZ
|
