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Hi everyone,

I received quite a few replies to my posting regarding my children's
antigliadin antibody tests all being positive and how high could these values
go and appreciate greatly all the support given to me.

The antigliadin IgG values varied from 40 (this individual had low B12 and
iron levels) to 100 (this individual had a false positive and was found to be
lactose intolerant and not Celiac) to 140 (no symptoms given) to 160 (this
individual's only symptom was weakness).  It appears from these answers that
symptoms are not necessarily related to how high the values are.  One
individual said his only symptom was the rash of DH, another had been
diagnosed as a baby and had been determined cured but only recently
rediagnosed after joint pain and anemia, and still another had constipation
more than diarrhea, canker sores and after being diagnosed and treated
noticed increased energy levels.  Another individual mentioned between the
ages of 8-18 there could be a honeymoon period where there are no symptoms
but damage is going on nonetheless.  Another talked about being a latent
Celiac where there are no full blown symptoms but will develop them someday.

Other replies addressed my unsupportive family members and a few gave
accounts of their attempts to have their family members tested.  This is a
reoccurring theme and is especially unrewarding with adults who do not want
to know.  You can only suggest they be tested, give them as much info as
they'll listen to and then back off.

With minor children it's a different story and it's the parent's
responsibility to have them tested.  One man wrote back it was simple - the
blood tests are first - the next step the biopsy - and if it's positive go on
the diet.  One of his daughters was positive and is now on the diet with him.

Other responders addressed the various blood tests.  Especially appreciated
was a response from Dr. Fasano who said the children should be tested further
for IgA and antiendomysium antibodies.  If these are positive then a biopsy
is mandatory to confirm the diagnosis.  If they are both negative they would
need to be tested for total IgA serum levels as low levels suggest an IgA
deficiency (a condition more common among Celiacs).  If this is so a biopsy
would also be required.

Dr. Vijay Kumar also recommended the two additional blood tests in order to
better interpret results.

A few people recommended if I was near Baltimore to take the children to the
first degree relatives blood screening.  I had already planned to go to hear
the two doctors speak so I just took my two youngest along with me to be
tested.   It was worth all the effort as hearing Dr. Horvath and Dr. Fasano
speak gave me the support I needed.  It also helped the 15 year old to
understand why he needed to be tested.  Dr. Fasano talked about the atypical
Celiac (which is more common in the US) and how important it is to find them
and treat them.

In four to five weeks the results from the screening should be back and
perhaps later I will report how it turns out.

Thanks to all,
Barbara