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Hi all!

A couple of weeks ago I asked about the reliability of blood tests & also
about anybody who found gluten made them hyper.  My reasons were that both my
son and I have various CD symptoms but whereas one of mine has been fatigue,
he is *very* active.  We have both had negative blood tests, which made me
wonder if there cld be a family trend.  Thomas's activity level made the
paediatrician (originally) do nothing following the original blood test.

I received many replies - some time I hope to finish writing personally to
everyone <G>.  Here's a *brief* summary, first answers about "hyper"
activity:

*******

along with my celiac, I have attention deficit disorder. I
know that when I get gluten it worsens my ADD symtoms.

*******

Often celiac can mimic attention deficit disorder with hyperactivity - we
can always tell when my son (now 7 1/2) has had gluten because his activity
level goes way up - he cannot stay in his seat, etc. (his eyes dilate too).
When he is gf, he does not have this problem.  His teacher has charted and
confirmed this.

******

Sue - the only thing I can tell you is that my 20 month old son was
dioagnosed with CD (he had a biopsy after numerous other tests showed
nothing - cat scan, ultra sound, berrium enima, antibitocs . . ) and the
main symptoms he had were the foul stools, fair skin, huge pot belly and
his growth had slowed incredible down.  NO ONE in my family
could have believed he was sick at all - he was the happiest
most active energetic child around.
So don't think for a minute because your child is active he is safe from CD

******

It is the gut aches that seem to make my daughter feel fatigue.  When
we give her Levson (for cramping), prescribed by her doctor, the pain
subsides and she is *very* active again.  If your son is not suffering
gut pain then it makes sence to me that he can be active and still
have other celiac related problems.

******

I would become quite hyper after ingesting gluten.  Late at night I would
clean house, excercise, etc.  until I would finally crash (overcome with
tiredness) and go to sleep.

******

My son (diagnosed at 15 mo.)  was also fairly energetic, especially in the
doctor's office for quite a while when he was "sick" (vomiting every day).
He also was a large baby and continued to grow a little, before it tapered
off.  The doctor assured me he "couldn't possibly be sick - he hasn't lost
enough weight and besides, look at that BELLY" (as if a very bloated belly is
a sign of health).

******

As far as activity is concerned, I don't think that is a determining factor
with celiac in children.  My 6 1/2 year old is the most athletic child in
our whole family of six children.

******

Maureen has always been very active, and particularly loves sport. Most
of her friends at school have been boys because she loves playing "rugby
and soccer" (informally) at lunch break. She was also in one of the
school's miniball teams (like indoor basketball) and kept up remarkably
well considering her small size and that this was during winter just
prior to her CD being confirmed.

******

My daughter never sleep at noons, and would go until 10pm at some days.  And
she was active during all this time.  I would not say that she was hyper, but
sure much more energetic than our son at the same age.  After she went GF,
she started to have rests at noon, but no naps.

******

My son is very active and doesn't really have any of the typical outward
symptoms.  I don't think gluten makes him hyper, but the intolerance has not
affected him that way.  (We started seeing the GI doctor because he kept
throwing up, but that had actually stopped before we got the diagnosis.)  So
in my opinion, not all Celiacs are "lethargic" like the doc kept asking me!

********

This reply dealt with both -ve blood tests & hyperactivity:

Our 5 year old daughter sounds like your son.  She was very allergic to milk,
so when we stopped it, we thought the "hyper" child would go away.  It
didn't.  She was negative for celiac in all 3 types of blood work, and an
intestinal biopsy.

After stopping glutens on our own, our child is much "calmer" until she
sneaks gluten - then she becomes a "holy terror."

I have celiac, and so does our son.  Even though our daughter tested
"negative", we find that glutens make her very hyper.  So we have one more to
cook gluten free for, and it's worth it.  She's a pleasure to have around
now.

***********

And now comments about blood tests:

*******

from what I have learned, a "positive" blood test is almost
100% accurate, but a "negative" blood test is not.  ....  I do know a
family who had negative blood tests (mother and daughter), but positive
biopsies.

*******

The IgA antigliadin antibody test can be a false negative if your child and
you are IgA deficient.  This is why the IgG test is usually run along with it
as this one will pick up on Celiac as well as many other completely unrelated
conditions such as lactose intolerance.

*******

My son had identical symptoms, but  his blood tests were negative too.  We
did not even try the biopsy.  Our pediatrician (practices in the US,
trained in Great Britain and Canada) diagnosed him (at age 2) as celiac
anyway - because he has seen it happen before.  His bottom line is - the
diet works.

*******

Here in Canada, the blood test is rarely done as there are a high number of
false negatives.   A gastroenterologist told me that even if it's negative,
they will do a biopsy anyway in most cases.

*******

My daughter came back negative on all three tests IgG, IGa, and Endomysial.
We insisted on having a biobsy test.  Our doctors' office was cooperative
although I'm sure they are sceptical.  They also have great confidence in the
blood tests.

*******

yes, it is possible to have a negative blood test and still have celiac.  My
son tested negative at 11 months.  He had many of the similar symptoms your
son has had, diarrhea,(lots) and poor growth and pale complexion and somewhat
on the irritable side.  A biopsy was done when he was 13 months old because
all other recommendations (changing formula, etc) did not help his diarrhea
or help him gain weight.  The biopsy confirmed damage to the villi...and CD
was suspected though not 100% confirmed because he also showed an inability
to process disaccharides, that is, he could not process foods with sugars,
starches and lactose in it well at all.  He was placed on a highly
specialized formula and a very restricted diet...until his diarrhea improved
greatly.  He didn't really start to respond until about a year after being
diagnosed...now he's doing well and he's 2 1/2 years old...

*******

There was a long response about blood tests by Tom from Technical
Service on Oct 28 1998. I presume the full text is in the archives.

According to Tom "IgA antibodies are less sensitive (than IgG
antibodies) but more specific...In clinical trials 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 THEY DON'T HAVE IT. False
positive results are uncommon but false negative results can occur....
on the other hand, the IgG antibodies are 91% specific and have an 87%
sensitivity...This test might yield false positive results but is less
likely to yield false negative results."

*******

Our son is 3 1/2, and dropped from the 75th percentile to below the bottom
very rapidly once my wife stopped breast feeding and we started to introduce
normal food.  He had all the symptoms of CD, but failed all the tests.  We
have had them repeated twice, both times negative.  .........  On the
irritability we are now GF for him totally, but even the slightest mistake
changes his humour noticably.  Basically, CD is only a recently discovered
disease (late 50s), so the medical science groups only know a little.

And without their tests they have no answer.  There are many people on this
list who seem to be atypical CDs.  So forgive my cynicism, until medical
science catches up with common sense you may have to assume CD or some such
judgement.  We have done so and in the past 3 weeks have gained .4 kilos.

*******

Have your doctor do a blood test to determine the child's IgA level (this is
a blood test for an immuneglobulin level----not the IgA anti-gliadin level or
the anti-endomysial level which is believed to be specific for celiac
disease).  If it is below 5 he is IgA deficient and the celiac blood
screening test will not be valid.  The child will not have enough circulating
IgA to make the test positive.  Even if the level is over 5 but is low for a
normal for his age--it may be too low for the test to be valid.  Often
celiacs have low circulating IgA levels.  I have this and so do three of my
daughters.  Blood tests were negative, however, my biopsy was positive and so
were the biopsies of two of the girls.  One daughter seems to have escaped
this diagnosis.  Many doctors are not aware of this--it took Dr.  Joe Murray
and Dr.  Fasano here in the US to tell us this.

*******

End of summary, now an update:

Well, that's a much shortened version of most of the replies I received.  I
was overwhelmed not only by the response, but also by the support and the
number of people who had similar experiences - Thank you all.  I included so
much of the original msgs because they contained a lot of info which I felt
you don't get from the books or the doctors (no slur on either here, just
that people's personal experiences say a lot).

What have we done?  We saw the paediatrician on Mar 22nd and Thomas had the
blood tests & bone x-ray repeated on Wed 31st.  They even wanted a stool
sample this time, tho that may have been to keep us parents quiet <G>.  the
paediatrician seemed disappointed that Thomas hadn't had a growth spurt & was
still having diarrhoea - her attitude this time seemed to be "This has been
going on a long time, we'd better find out why" ...  or maybe that's just my
interpretation.

We should find out the results in the next 4 weeks - I told the paediatrician
that if they're negative again I want to try a GF diet anyway.  She seemed OK
about that but the dietitian (who in spite of trying a milk-free diet has
always seemed to think it was CD) wants them to just do a biopsy before
changing the diet.  *If* the tests are negative again I'll let them argue
about it for a few days & then demand action of some sort (this has been
going on long enough!!).

BTW the paediatrician referred to the endomysial test as the "Gold standard"
wihtout even seeing my printout of the document about non-invasive tests (as
detailed in the welcoming msg).  They also did a blood count this time, to
test for anaemia (I grilled the pathologist before she got away!).

Thank you all for so much support and information - it was very helpful and
gave us a feel for what we should expect and how we could argue (tho I didn't
actually need to argue in the event!).  I may have to unsub for a short
while, but I'm sure I shall be back and will let you know what has happened
to both Thomas and me.

Sue O <[log in to unmask]> in England