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I got so much support and validation when I posted my "Is this real"
post. So many folks put faith into Mom know's best. So many folks were
frustrated by medical experts ... only because they lack
information (not because they're bad people). I suspect doctor's are
restricted from relying on intuition by our legal system and
liability issues ... and they don't have enough science here to
back them up.

Here are a few of the MANY responses I got. They represent the majority.

Anyway ... I guess I really want an official diagnosis, but I can't live
through three weeks of gluten eating. My son doesn't sleep and is
miserable. I don't feel right putting him and my family through that.

Thanks everyone so much for the infor an support!

Happy Holidays,

Paris in Cleveland


1) Paris, You love your child. Why be forced to march in lock step with
everyone else? Gluten and wheat are used because they are cheap! do the
research and put forth the effort! I eat fresh Foods and have quit the
gluten containing items totally. My health has improved drastically in 7
months. I say screw the experts, wheat and the rest  cause bloating and
mess up digestion. If you still feel that breads/pies/cakes etc are
necessary as a component of diet, It is best to use other flours if you
are willing to make the effort ....Start doing your homework and take
good care of that little boy!  Chuck


2) Paris--when reintroducing a food--always do so very, very slowly.
Start with a small portion the first day (like 1 Tablespoon) and go up
from there--slowwwwwly.  The body is not used to processing gluten--so
it needs time to adapt.   Lorri


3) First of all blood tests for CD are only usefully if the patient is
eating gluten.  After 10 months GF, the fact that the blood test is non-
indicative of celiac disease is just as likely to mean he is a celiac
responding to the diet as it can mean that he is not celiac.  The real
problem is that there is no pre-gluten-free baseline blood test for the
pediatrician to compare the results to.

When my daughter was diagnosed (3 years ago at age 3) she was given the
endimysial(sp?) antibody test.  She tested at 2560.  Normal is less than
20.  After one month on a GF diet the same test was at about 200 and
within 3 months was normal.  She has been tested every 6 months ever
since and is testing in the normal range.  Her pedi-GI says this is
indicitive that she is responding to the diet AND that the original
diagnosis of CD was correct.  I should note that she was biopsied after
that blood test and again before she was GF.

As far as symptoms go, when my daughter eats gluten she has an immediate
reaction (within a couple of hours) and it lasts about 2 -3 hours.  It
generally wipes her out so much that she is down for a day.  Her
reaction is vomitting.  It does not last.  BUT, this is only a single
ingestion of gluten.  (Like one pretzle or one item that we thought was
GF and was not) This is not a gluten challange where she keeps eating
gluten.  I would imagine that if she kept eating it she would stay
sicker longer.

Here's my suggestion for what it is worth. Can you ask your pediatrician
how long you would need to do the challenge to get an accurate blood or
biopsy test done? If you choose to do the challenge I would ask them to
do both the blood test and the biopsy, it gives you a little more to go
on. Once you start the challenge, keep it quiet. Don't say anything to
your son, but do keep some objective type charts both before and during
the challenge, # of complaints of pain a day, #'s of BM's, hours awake
at night. As hard  as it might be, I would do the challenge rather than
risk raising a child on a gluten free diet only to have him find out
some day it wasn't necessary. If you do the challenge and find out he
doesn't have Celiac, perhaps you would only have to eliminate certain
foods, rather than all the Gluten containing foods.


4)   I have a two year old daughter who suffered from diarrhea and
sleeplessness for quite some time.  She did not gain any weight from the

time she was 10 mo. old until she was two.  I became concerned because I
had been on the gluten free diet and I felt she may have celiac as well.

  I tried to mention this to her doctor but of course she told me Celiac

disease is rare and that my child would look like a stick figure with a
bloated belly if she had Celiac.  I persisted saying I don't want my
child starving to death before I do something about this!

  Celiac disease is not rare, read the studies being done by the
University of Maryland.  They have found it to be in as many as 1 in 100
to 1 in 250 people.

  I had my daughter tested by Dr. Fine and her test results were
shocking.

They were not only positive for gluten sensitivity her levels were
extremely high.  Once I put her on the gluten free diet the diarrhea
stopped the sleepless nights stopped and she gained 3 pounds in two
months!  My opinion is "Mothers Know Best!"


6) When my gastrointerologist wanted to test me for celiac disease at
age 20 I never returned the call to a schedule the intestinal biopsy.
Why? I was 20 years old and had no health insurance. A couple weeks
later  I received a call form the secretary urging me to schedule. I
told her i could not afford it. Then another week later i got a personal
phone call from the doctor himself. He said if you dont have this done
it could lead to cancer. I asked him if i could follow the diet and just
see if i got better and he said it is to strict of a diet to simply "try
it", I now agree. This is a very restrictive diet and the diet itself
can cause problems because it is difficult to get the proper amount of
dietary fiber needed. I would be very concerned for a growing child to
be on this diet if it was not necessary not only for dietary needs
reasons but for emotional reasons also. How is he going to feel being
the kid who cant eat the cookies or cupcakes brought to school on some
kids birthday, and there will be many more similar and awkward
stiuations as he gets older.

 I am under the understanding that the biopsy is still the only accurate
way of detecting celiac. You need to have him properly tested for celiac
and if they find he doesn't have celiac you need to find a doctor that
CAN find out what is wrong. Good luck.

Katherine


8) My advice: follow your mother's intuition and stick to your guns. Of
course you can have gluten symptoms the day after (mine are ALWAYS the
day after and I am a diagnosed celiac). Get rid of this person who is
telling you things that are just plain wrong. Your child's life is
hanging in the balance and he has to depend on you to keep him our of
harm's way! (I have two celiac kids and it's not easy but it is the same
thing I would do if they had heart disease or anything else: protect
them from getting sick or worse.....).


9) PLEASE  DONT LISTEN TO THE DOCTOR!!!!!!  She knows not of what she
speaks.  Listen to yourself and your child.  Have faith you are doing
the right thing, your child will be the better for it, do not doubt
yourself. I am not against doctors but in this area they are lacking and
some dont want to learn.  A gluten sensitivity is not rare, my doctor
told me they are diagnosing more and more people with it.  He also told
me the real test is the "eating test".

Maybe the best thing you could do for your child is to stay away from
the doctor.

Please let me know if I could be of any help.


10) I'm so impressed with the way you take things into your own hands to
help your son.

My symptoms of a gluten slipup anytime during the day usually start in
the middle of the night (the night of the slipup).  Next morning is
rough and during that day.  It usually ends there because my slipups are
so minute.

Many years ago in my early days of gluten reactions it could last for
days but always started within 24 hours.

I'm sure you must know that the blood test does not tell you anything
because he was gluten free for so long.

You could either keep him on a regular diet for awhile and have him
tested or just do what works.  It's a tough decision.

Again, you are doing a great job.


11) I have a 12 year old who is gluten free since august 2000. I also
self diagnosed him and implemented the diet my self as I have celiac
disease and his peditrician did not believe me when I suggested he be
tested for it also. His symptoms drastically improved and academically
he has made leaps and bounds (amazing the change in learning!). Anyway,
I felt like I was depriving him and he was frustrated with the diet so I
gave in and let him have pizza one night. The next day he was horribly
sick. Stomach pains, fatigue, just miserable. So yes I believe you can
have symptoms the next day. I often wonder (now more than ever) just why
do doctors get paid so much? Seems like we know our own bodies the best.
Personally I haven't found any doctors yet that can understand.