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Subject:
From:
Susan Smith <[log in to unmask]>
Date:
Fri, 7 Jan 2000 00:20:54 EST
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<<Disclaimer: Verify this information before applying it to your situation.>>

ok, holidays over, getting caught up again.  here's the results of my query
on blood test results for myself and sons, of which son #1 had high iga with
recommended retest in 6 months.

------------
#1 son should continue to eat a normal diet containing gluten until he is
retested at least.  If you take the gluten out of his diet and he is a
celiac--you will not get a positive test.  He needs to eat it, and lots of
it prior to  the next blood test.  Once the gluten is removed, the enzymes
begin to return to normal in a celiac.

Tell Dad not to change his diet yet.

If you and the other son have symptoms and feel there is a possibility of
celiac with negative enzymes--
You can request your doctor draw blood and do an IgA level.  This will tell
you if you have an IgA deficiency.

Everyone in our family had low levels of IgA and all the blood tests were
negative.  Once it was determined that everyone was low, biopsies were done
and 4 people were diagnosed.  Many doctors are not aware of this fact.

Good luck with your family.

Coralie
----------------
Do not put son no 2 on the gf diet until he is properly diagnosed by
intestinal biopsy.  If you think he has Celiac, then take him to a GI doctor
and have him biopsied.  If you put him on the diet before diagnosis, you'll
never be sure he has Celiac and since it is such a stringent diet, you really
need to be sure for his sake.  I have heard many doctors recommend this.

As far as if a person has an IgA deficiency, then only their IgG levels will
be high. When I had the tests done by Dr. Fasano's lab in Baltimore, they
automatically did the IgA deficiency test and they said my sons are not
deficient so the IgA blood tests should be accurate.  All my sons had high
IgG levels and the two oldest were biopsied but neither has Celiac disease.
The middle son has some food allergies such as canola and shrimp so this
might be why his is high.

Barb
--------------
You might not want to put your son on a grf diet if you want to know
for sure if he has CD.  If he has no symptoms and is doing well and
feeling fine, I would have him eat normally until tthe 6 mo test.
Then you will know for sure if he has it.  If you put him on a gf diet
now, you will always wonder....

Diane
----------------
Yes, if you have an IgA deficiency you will show false negatives. I have
that. I am on a g/f diet for 25 yrs now. I cannot eat gluten and get
sick when it sneaks in so that is good enough for docs and me.

Rosalie
-----------------
I'm a Dutch Ph.D. student working on genetics of celiac disease. I'll
try to answer your questions. Each laboratory has their own values of
what is normal and what is not. These values are specific for each
lab. They test a number of people that do not have celiac disease,
and a number that do have the disease. Than they can draw a
borderline, below which values someone is negative for CD, and above
which a person could have CD.

>the form they gave me says iga aga normal (by the elisa method (???)) is <18,
>iga igg normal is <24 and the antiendomysium iga normal is <1:4.
>
>My results:  aga iga 14.46 (after being mostly gluten free for 3-4 weeks then
>back on for the test for 3-4 weeks), igg 5.64, and ema iga is negative.
>their comment is that i have normal antibody levels

both aga iga and igg are below the bordeline, and the ema is
negative. Ema results come back "negative" or "positive", and are
negative in healthy persons. So, based on this test, CD is not
expected. Your were not long enough gluten-free to have an effect on
this test. That can take quite a long time in adults.

>#2 son:  iga 6.07, igg 21.56 and ema iga is negative.  their comment is that
he has normal antibody levels

Again, both aga iga and igg are below the bordeline, and the ema is
negative. So, same conclusion.


>#1 son: iga 24.39, igg 17.16 and ema iga is negative.  their comment is that
>his iga aga is elevated, repeat the test in 6 months.

They are right with their comments. The iga aga is the least
sensitive for celiac disease. It can be elevated without any signs of
intestinal damage due to gluten ingestion. The ema test is the most
sensitive for celiac disease. When this one is postive, then a biopsy
is advised, even when the others are negative. So, there is no reason
to worry yet. Keep your son on a normal diet, and take the test again
later. Het should eat gluten, otherwise it's impossible to make a
diagnosis, because the antibodies disappear en the intestines become
restored without gluten in the diet. But keep a close eye on him. If
he get's really sick, then you should go back sooner. I believe it's
important to be sure your son has celiac disease before you put him
on a diet. Because the diet is for the rest of his life, and it
should be a shame if it was for nothing. But that's my personal
opinion.

I hope this answers your questions. If not, or you have other
questions, you can always email me.

Kind regards,


Martine van Belzen
------------------------------
Martine was extremely helpful and replied forthwith to further inquiries by
me with this result:

About your question, an elevated antigliadin IgA level is not a very good
indicator for celiac disease. As I said before, the EMA test is the
best one. It happens sometimes that a person is only positive for
antigliadin IgA, for no apparent reason. It could be that your son is
in the process of developing celiac disease. If you would have a
biopsy done at this moment, the chance is big that it will be normal.

When you wait for some time, and take the bloodtest again, then you
can see if there are any changes. If the test comes back more
positive (all 3 antibodies positive, or at least a positive EMA),
then a biopsy must be taken. If nothing has changed, then he probably
doesn't have CD. We advice a biopsy in these cases only when a
patient has serious complaints and CD is likely, for example due to
celiac disease in close relatives.

To summarize, a biopsy should only be taken when there is enough
reason to believe that a patient might have CD. In your son's case,
it's better to wait a while a see how he does. It would be a shame to
put him through this procedure, and have to do it again over a year.
------------------
plus, two requests for results and one more message that basically mirrors
what everyone is saying above.

thank you all so much for the answers.  this whole issue is for some odd
reason not coming entirely clear, but i do at least have a very basic
understanding of the whole thing now.

thanks!
susan ;)
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