<<Disclaimer: Verify this information before applying it to your situation.>>
I found from all the responses I received for my questions - when to test
children, what tests to use and when to introduce gluten to a baby, to be
all over the barn yard. The bottom line from what I can gather is there is
no research that spells out a definitive answer to any of those three
questions. People have shared their opinions and I am copying them into
the summary. Thankyou to all who took the time to answer my email. (If you
don't see your response here it is due to the computer crashing before I
could save it.) Carol Connolly
- I just found nice information at www.prometheuslabs.com
Click on products, specialty, gasteroenterology..
Direct link is http://www.prometheuslabs.com/221d.asp?nav=products
You can ask to have Prometheus do the testing. Since they do lots of testing
for celiac, they are better at what they do than labs that don't do much
celiac testing.
- I'm not an expert, but a mother with celiac who is concerned about her
children.
By the time I figured out that I had celiac, my first son was already eating
gluten. Since he wasn't showing any symptoms, I decided to let him continue
eating gluten and think I will ask his doctor to run bloodwork screening
when he is 5. I picked 5 because I've read that by age 5 all children in
Italy are tested. If he starts showing signs, I'll push for testing
earlier.
For my second son, I was cautious with food introductions and withheld
anything containing gluten until 9 months. So far, I'm not seeing any
clear signs, and will also continue to watch him. He did have the celiac
blood panel run and it came back normal.
- I've heard a wide range for the chances that my children have it. They
ranged from 15% to they have to have it because I do. It gets very
confusing and I don't really have a good source of information. My youngest
has been referred to a ped. GI because of reflux, so when he has that
appointment in a couple of months, she'll be getting a lot of questions from
me on this topic.
It is recommended that the children be tested every
1-3 years even if there are no symptoms.
As far as your 15 month old - I have a 6 month old who I intended on not
given gluten, however, I was told if they don't get gluten ( a significant
amount)
they will not test positive. They want to test my baby at one year. There is
no study that shows if you keep your child away from gluten they won't get
it.
The problem with this theory is the child may have Celiac and not be showing
enough outward signs, because they are not getting enough gluten. I have
been
told you can actually be harming your child by keeping the gluten away. I
hope
that makes sense. I am still confused on what to do with my 6 month old.
The blood test is a "Celiac Panel".
IgA serum
Gliadin Ab (IgG,A)
Gliadin Ab (IgG,G)
Tissue Transglutaminase Ab IgG
tTG-IgG Ab
Tissue Transglutaminase Ab IgG
tTG-IgA Ab
1) What age to test an asymptomatic child of a parent with CD (four yr.
old that eats gluten foods)
Anything now. Make sure child is eating enough gluten. Usually the amount
of gluten consumed in a celiac household is less than normal just because
gluten is used "around the edges"--bread, pasta, cereal etc. Thing that are
made from the whole family--gravy, filler in meatloaf, coating on chicken,
soup base, etc. are g.f. to make life easier for the cook.
New research (within the last couple of years) says small amounts of gluten
should be introduced while mom is still breast feeding. Before that, gluten
should be introduced gradually at 12 months. Symptoms for celiac between 1
& 2 years are most likely to be limited to 4 symptoms--diarrhea, vomiting,
failure to thrive, and vomiting. I'm attaching a chart from the U/Chicago on
the symptoms. By 5, these symptoms are less prevalent and the others
increase, making dx harder. Keeping the child g.f. for the first year gets
him/her off to a good start and it's easier to identify any other
sensitivities. Blood tests for celiac are most reliable for kids 3 & older,
but will probably catch celiac in those over 12 months.
3) What tests to ask my pediatrician for.
Research has suggested that the tTg is most reliable when there is lots of
damage.
Probably best to run the celiac panel--AGA for IgA & IgG, anti-Ema, & tTg.
False Negative Serological Results Increase with Less Severe Villous Atrophy
Dig Dis Sci. 2004 Apr;49(4):546-50
Celiac.com 08/27/2004 - Dr. Peter Green and colleagues at the Department of
Medicine, Columbia University College of Physicians and Surgeons, New York,
New York, conducted a study designed to determine the sensitivity of the
various serological tests used to diagnose celiac disease. To do this they
looked at 115 adults with biopsy-proven celiac disease who fulfilled strict
criteria which included serological testing at the time of their diagnosis,
and a positive response to a gluten-free diet. Out of those studied, 71% had
total villous atrophy, and 29% had partial villous atrophy. Serological
results indicated that only 77% of those with total and 33% of those with
partial villous atrophy actually tested positive for celiac disease, and it
did not matter whether the patients presented with classical or silent
symptoms. All patients who were positive for anti-tissue transglutaminase
had total villous atrophy. The researchers conclude: "Seronegative celiac
disease occurs. Endomysial antibody positivity correlates with more severe
villous atrophy and not mode of presentation of celiac disease. Serologic
tests, in clinical practice, lack the sensitivity reported in the
literature." from www.celiac.com Copyright © 1995-2004Scott Adams
The antibody tests seem to be unreliable for children under the age of 2-3
because of their immature immune systems.
The doctors say that breast feeding does give some protection to babies.
However, they want parents to feed their children normally after they are
weaned. If a child is not eating gluten, all the tests will be invalid.
Go to our chapter website under "Testing"; double click on the topic and
read the details.
www.houstonceliacs.org
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