<<Disclaimer: Verify this information before applying it to your situation.>>

Dear Friends, Thank you to all who replied to my post regarding whether
to test my two boys for celiac disease. I am a celiac, diagnosed 6
months ago by bloodtest and biopsy. I think every single response I
received contradicted what my pediatrician and the pediatric gastro told
me (see my original post following this paragraph)  Hence, I decided to
send my question to Dr.  Fasano at the University of Maryland, citing
what I was told by my pediatrician and pediatric gastro told me. I also
cited the many responses I received via this listserve. You will find
our correspondence at the end of this message. Thank  you all for
educating me. I have hopes that this information will be extremely
helpful to many of you who also seem to be in the same boat. I am
positively convinced that it makes sense to do the bloodtest, for the
eleven year old. I will wait until my 18 month old is older (about age 6
or 7 unless symptoms appear sooner) for his blood test.

***Please note that I attempted to post a list of all the responses I
received via the listserv, but it was rejected because it was too long.
There is a limit to the length per post.

ORIGINAL POST:

Please offer your thoughts, if you have any on this subject. I was
diagnosed with celiac 6 months ago. I have two sons, one is 11 years the
other is 18 months. At the 11 year old's physical, I asked our
pediatrician about having him tested for celiac even though he has no
obvious symptoms. It took 10 years for me to be diagnosed (I  was  told
Irritable Bowel for 10 years), and it bothers me to think about how much
damage I unknowingly did to my small intestine. If possible, I'd like to
protect my son from that. However, after much discussion with the
pediatrician (who I might add, consulted with a pediatric
gastroenterologist), I am feeling even more confused than ever.  The two
outcomes of testing: a) We do the blood test and biopsy and find out
he's negative. That would rule out that he would not develop celiac
disease. Which would make me feel incredibly happy. or b) we do the
blood test and biopsy and find out that he's positive BUT he has no
symptoms right now. So then what? Do you force a child of 11 years to
adhere to a gluten free diet even though he's not technically sick
(yet)? My other major concern is this. If he has no symptoms, but does
have celiac disease, is there damage being done to his small intestine
even though he has no symptoms? The pediatric gastro says that there is
"no evidence" to support or refute that.

CORRESPONDENCE WITH DR. FASANO

      : Wednesday, December 20, 2000 7:41 PM

      Hello Dr. Fasano, I hope that you would be so kind as to offer me
some advice.  I was diagnosed with Celiac Disease six months ago via a
"celiac disease panel" (my # was 160) and then it was confirmed via
biopsy. I had been diagnosed with "Irritable Bowel Syndrome" ten years
prior. I am the first in my family to be tested for or diagnosed with this.

      I recently asked my pediatrician if I should have my two children, an
11 year old boy and an 18 month old boy, tested. She consulted with a
pediatric gastroenterologist and got back to me a few days ago with her
opinion. She recommended that we hold off on a blood test because both of my
children are asymptomatic. Concerned, I then asked her if an asymptomatic
celiac would still experience damage to the lining of the small intestine.
She told me that, according to her consultation with the pediatric
gastroenterologist, there is no scientific proof to support or refute this.
I don't understand what constitutes "scientific evidence" however, because
to me, it would seem that if a biopsy shows damaged villi in a suspected
celiac, there's your evidence of damage. When I pointed this out to the
pediatrician, she said that damaged, blunted villi could also be the result
of a stomach virus, not necessarily that of a celiac who has ingested
gluten. Further, when I posted this question to the celiac listserv, every
single person who replied said that whether or not my children have symptoms
 they should be tested for celiac disease because asymptomatic or
symptomatic, a celiac who eats gluten is damaging their small intestine.
Also, I read on your site that for every one symptomatic celiac, there are
four asymptomatic celiacs.

      I don't want to undermine my doctor's opinion, however, I want to be
certain that I'm doing what's best for my children.

      I hope to hear from you.

      Thank you very much.

      Deborah Clough

      : Thursday, December 21, 2000 10:35 AM

      Dear Deborah,

      I have to say that your argument to your pediatrician is absolutely
correct.  A damage is a damage, no matter what.  The serology test is indeed
aimed at establishing whether the intestinal damage is related to celiac
disease or to other causes (including viral infection).  Because of the high
occurrence of celiac disease among first degree relatives of celiac patients
(up to 10%) we always recommend to screen the entire household.  Only if the
test results positive an intestinal biopsy is indicated.  As concern your
case, I would screen your 11 years old son, while I would wait for the
younger one.

      Sincerely,

      Alessio Fasano, M.D.

      Professor of Pediatrics, Medicine, and Physiology
      University of Maryland School of Medicine


      : Thursday, December 21, 2000 1:38 PM

      Dear Dr. Fasano, Thank you very much for your prompt reply. I am
going to print out your reply and bring it to my pediatrician. I want to
have my 11 year old tested, and as you recommended, I will wait to have
the younger one tested.  At what age do you recommend? I have heard that
age 2 is appropriate. Is that the case?

      Also, one more question, if I may. If the bloodwork is negative for
celiac, do we need to retest, and if so, how often?

      I appreciate all of your help.

      Best regards,
      Deborah


      Typically we recommend to wait until age 6-7, unless the child starts
to experience symptoms compatible with celiac disease.