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RE: [IPk] Re: ip-uk-digest V3 #506- A coeliac question



Kirsty


I have two daughters (twins) with coeliac, one also has type 1 diabetes.

I would ask your GP which blood test was carried out.  The TT glutaminase test
is the one that it most accurate.


 This explains the basics of coeliac disease testing. Most importantly for you
is that the AGA IgG test is the LEAST definitive test for Coeliac disease and
could mean other things are going on. If your daughters total Serum IgA is low,
you will also need another test - the Ttg IgG. If that comes back positive, a
biopsy is indicated.

There are a total of 6 tests that can be run for Celiac disease. These are:
(1) Anti-Gliadin AGA IgA
(2) Anti-Gliadin AGA IgG
(3) Anti-Tissue Transglutaminase tTg-IgA
(4) Anti-Tissue Transglutaminase tTg-IgG
(5) Total Serum IgA
(6) Endomesial Antiobody IgA (EMA)

The ones with IgA test for the IgA antibody in the system. These are the
preferred ones to test for Coeliac disease. The IgG tests test for IgG
antibodies in the system, which are not as indicative of Coeliac disease as the
IgA ones. The most indicative test of Coeliac is the tTg-IgA one (number 3
above).

Total Serum IgA will tell you if your 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 IgA antibodies, the IgA tests
above (number 1, 3, and 6) will never come back positive for Coeliac disease,
even if you have Coeliac disease. Therefore, they rely on the IgG numbers. So,
without knowing if your daughter is IgA deficient, you can't interpret the
results.

They sometimes recommend the standard 4 tests (above they are numbers 1, 2, 3
 and 5). They ONLY run #4 if total serum IgA indicates a deficiency and/or if
the
AGA IgG (number 2 above) is the only one that is abnormally high.  Because your
daughter is  young, total IgA may not be accurate. They only definitely
diagnosis IgA deficiency in kids 4 years and older.

Finally, EMA test and the tTg-IgA test are positive/negative tests. You get a
yes or no. It is my understanding that the EMA test is the "older" test that
used to be run. It is more expensive and also 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. You can have both done, but it isn't necessary.


 I would check again which tests were actually done. I requested tests for my 18
year old daughter this year and twice the wrong tests were asked for.  It was
only because I knew where to ask and which tests should have been done that I
 realised that the incorrect tests were asked for. My daughter phoned up and was
told that the tests were negative when the wrong tests were carried out.  Then
 the second test results were lost!. Is your daughter eating enough food with
gluten in? Just asking in case you have all switched to a mainly GF diet with
your husband.  If your daughter was to start going gluten free then the tests
would come back as negative and you would not have a correct diagnosis.  It is
possible to go on the develop coeliac at any time.  For instance, it is
recommended that all children with type 1 diabetes should be tested for coeliac
 at diagnosis and if negative they should be re tested at 2 -3 yearly intervals,
or sooner if there are symptoms.

As your husband has coeliac, an autoimmune disease and you have type 1 diabetes
 your daughter is likely to be at an increase risk of developing these
autoimmune
conditions, so its certainly right to keep and eye on the situation.  One
negative tests for coeliac doesn't mean that one will never develop it
unfortunately.

Though the twins have coeliac and one has diabetes too, there is no one in mine
or my husband's near or extended family, who has either condition.  Though I
have rheumatoid arthritis  (no one in my family with that either) which began
causing problems in the same months as Sasha started getting the first symptoms
of diabetes.

Many young girls do have low iron levels, this could be due to a number of
reasons.  Perhaps she doesn't like or eat much iron rich food.  One of my
daughter ate little meat at one time but did eat lots of iron rich vegetables.






Jackie Jacombs mum of Sasha aged 12, diagnosed 1999, twin sister Rebecca both
coeliac, two older girls, Nicki and Danni, husband Terry




> Hi
>
> I know this is off topic, but I noticed a few of you either had coeliacs
 > disease/ parents of a child with it and I wondered if I could ask a question?
> My
> daughter has just had a blood test to check for coeliacs disease (my husband
> was  diagnosed this year) as she has been showing signs of it.  The test has
> come back negative, but her iron levels are low and our G.P wants to
> start her
>  on medication to correct her levels (Sophie is almost 5yrs old). Is it
 > possible to have a false negative test for coeliacs disease? Now that she has
> had
> a  negative test is it possible she may develop it later on? I do not
> know why
> she  has low iron levels and thought this in itself was suggestive of
> coeliacs  disease?
>
> Any advice/suggestions are gratefully accepted.
>
> Kirsty
> Type 1 33yrs (pumping 3.5yr)
> .

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