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Karen Mahoney" <[log in to unmask]> wrote:

> I have a daughter who was diagnosed with CD at age 4 last april...She
> had a biopsy done in april, and another in august..in between that
> time, she thrived, gained 7 to 10 pounds, grew 2 inches, and has not
> been the least bit sick since april..The second biopsy came back
> totally normal, and I was told to keep her on the diet, and she would
> be a normal healthy girl..NO GLUTEN..So that is what I have done..But
> in reading some of the other letters here, I can't help but wonder if
> she really has CD..

I am not a medical professional.  I speak as the parent of two celiac
children (ages 5 and 8).  So keep that in mind.

My understanding is that there are two steps in diagnosing celiac
disease (CD).  The first step is to do a small bowel biopsy, where you
look for abnormalities including damage to the villi, elongated
"crypts" under the villi, increased concentrations of lymphocytes, and
damaged epitheleal cells<1>.  If these abnormalities are found, then
you put the patient on a GF diet and see how he/she responds.  If the
patient recovers, then the diagnosis is considered complete.

Considering the child's growth, apparent health, and favorable results
from the second biopsy, I think the diagnosis of CD is right on target.

> ...I know I have made mistakes in her diet..and she has never shown
> another symptom since april...I try to make sure that everything is
> gluten free, but I find later that I have made a mistake.

If her diet has been mostly GF, with only an occasional mistake, then
it is very likely she would almost completely heal.  Each mistake would
have caused some damage, but if a small amount of gluten is involved
then the amount of damage is likely to be small and concentrated in
small areas.  A biopsy would likely miss these small areas since most
of the intestinal lining would look normal and healthy.

This would explain the apparent paradox of a normal second biopsy when
the diet was not entirely GF.

> I am just hoping that maybe she could have a mild case.

I don't believe you can have a "mild case" of CD.  Either your immune
system reacts to gluten, or it doesn't.  It is true that some celiacs
have a noticeable and immediate reaction when they eat gluten, while
others (including my children) do not.  But regardless of whether or
not there is a reaction, the ingestion of gluten is going to cause
damage in the small intestine.  So don't let the absence of symptoms
lead you to thinking the diagnosis is wrong.

I would venture to say that most newly-diagnosed celiacs make some
mistakes on the diet, which they gradually learn about over time.  But
even with the mistakes, the diet is so much lower in gluten they still
tend to improve and heal.  However it is important to keep striving to
be as GF as possible; because even a little damage, if it is continual,
can lead to problems in the future.

> I am just hoping there could have been a mistake made, and she had
> something else in april, and it is now gone.

I don't blame you for hoping that it is a mistake, because it certainly
would be easier to not have to deal with a special diet.  And I won't
say that a misdiagnosis is impossible.  But from what you've described
I think the diagnosis of CD is almost certainly correct.

Just one layperson's point of view.

Jim Lyles ........ <[log in to unmask]> ........ Holly, Michigan, USA