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

Dear Listmates,

Thank you so much for all of your suggestions and reassurances at a time
when I really needed it.  Several people had similar concerns and I sent
them reassurances privately until I could get a chance to summarize.  In
the interest of brevity, I have included only those comments of global
interest but I really appreciate each and every response I received.

Brief summary of original message:  My daughter was diagnosed in January
and had an EMA antibody level of 230.  We thought we did a great job
handling the GF diet and cleaning up our cooking procedures but in
August her repeat antibody level was 70 (much lower but not zero). Then
we went totally nuts, severely limited her food, and called every
company personally.  Her December repeat level was hardly different at
55.  In desperation, I posted the message asking for suggestions.
During this 11-month period, my daughter has gained weight, grown, and
looks great.

********************************************************************************

Suggestions (special thanks to Dennis for his many ideas):

Check for contaminated pots & pans, cookie sheets, serving ware &
utensils.  Nonstick, ironware, glass & Corningware that was previously
used for gluten items can have crusted-on gluten that is difficult or
impossible to remove.  Replace pans, cover old pans with foil or
parchment paper, or completely remove the gluten if possible.  To clean
gluten off glass pans, try Easy off oven cleaner.  Spray them, let them
sit in the sink for a couple hours, then rinse and wash (using
throw-a-away gloves).  If there is a lot of buildup, you may have to do
it a couple times.  To clean gluten off Corningware:  Try Dip-It.

Watch out for contaminated baking ingredients (such as cornstarch &
sugar) from when your house was not GF (or from someone that lives with
you that uses gluten ingredients).  If a spoon goes in the GF item after
going in regular flour, the baking ingredient is contaminated.

Make sure you have your own toaster, frypan, butter/marg container,
jams, etc.

When buying cold cuts,  request that they wash/wipe down the blades and
area.  Watch out especially at delis where they also make sandwiches.
Consider buying prepackaged deli meats

Check out her shampoo, soap, toothpaste and lotions.  Also, make sure no
one else's toothbrush touches hers.

Watch out for restaurants where the grill or cooking area may be
contaminated.

************************************************************************

Antibody Level Experiences:

Of 13 people who had similar experiences,

   7 still have high levels after about one year,
   1 person's EMA level took 18 months to go down,
   3 still have high levels after 2 years,
   1 person's level took 5 years to go down (they were very sick when
diagnosed)

   1 person knows someone who cheats regularly and who has levels within
normal range

The above people mentioned that their physical symptoms were greatly
improved.  They (except the cheater) followed the GF diet very carefully
and some even had a totally GF household.  It seems that everyone heals
at a different rate.

************************************************************************

Reassurances and Comments of Special Interest (edited):

A pediatric GI doctor spoke at our support group recently.  He said that
the levels may not go back to zero, but you should definitely see an
improvement.

*****

I have heard of antibody levels taking a long time to go down to
"normal." I don't think you should get yourselves crazy over it.  It
seems like you're doing a fine job of keeping your daughter gf, and as
you yourself said, she's put weight on and seems to be doing fine.

*****

I remember my son's gastro saying that one set of antibodies goes down
quickly and the other much more slowly.  Of course it has been some time
and I can't remember which is which.  But that may be what is going on
with your daughter.

*****

MIne has gone done 50% so far in 6 mo.  It just may take some time to
get out of her system.  The blood levels measure auto-immune reaction
not gluten presence.  As long as they are decreasing and not increasing,
you are on the right track according to my GI.

*****

I think it takes time for levels to drop in some individuals and would
not be too distressed with your daughter's results.  Continue doing what
you are doing but don't let it overwhelm you; it's no fun being afraid
of your food.

*****

Her GI doc said the anti-gliadin IgG antibodies can remain in the blood
up to 1 year after the last exposure.  Since it is moving steadily down,
I would not worry.  More importantly, since you say you are both very
strict with the diet, is - how does she feel?   Worry brings its own
troubles.

*****

Look at the important things:  does she have an appetite, is she in
pain, is she doing ok in school - those are better than serology tests
in many ways.  Don't lose sight of the big picture.

*****

The consensus seems to be that we all heal at individual speeds and as
long as we feel well and are moving in the right direction, don't sweat
it.

*****

Keep on doing what you are - never feel you are being "too fussy" or
"too difficult". To become totally healed we need to be as much 100% GF
as possible.

Thanks again to everyone!  I would not have made it through the holidays
without you!

Cindy in MA