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Subject:
From:
Jim Lyles <[log in to unmask]>
Date:
Sun, 20 Oct 1996 00:01:00 EST
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<<Disclaimer: Verify this information before applying it to your situation.>>

Sharon asked how much damage is done to the villi when a celiac consumes
gluten, either intentionally or by accident.

I'm not a doctor, so take what I say with a grain (er, crystal) of salt.

Perhaps the best way to answer this is to look at how a gluten
challenge is handled.  A gluten challenge can sometimes be necessary
when someone has been on a gluten-free (GF) diet without ever getting
a biopsy-confirmed diagnosis of celiac disease (CD).  My understanding
is that a gluten challenge must go on for several months before a
biopsy can be done.  In this situation, you would of course be trying
to eat gluten and would get much more of it than you would from an
occasional accident.

That means several months (at least) of a diet heavy in gluten may be
necessary to sustain enough damage in the villi to be detected by a
biopsy.  So I think it is safe to say that a "slip" would not cause
immediate total villi damage.

Now, before you start thinking, "Ah, that means I can cheat now and
then," let me point out that many of the problems associated with
untreated CD can occur with only minor damage.  Continual damage, even
if only minor, to the same area of the body increases the risk of
lymphoma.  Thus, those that get too much sun for too long may get skin
cancer; those that smoke may get lung cancer; and celiacs that cheat
may get lymphoma in the small intestine.  The risk is still relatively
low, but decidedly higher than for celiacs on a strict GF diet.

Continuous low-level villi damage could affect absorption enough to
deplete stores of vitamins and minerals without you really noticing.
For example, you might not realize that you haven't been absorbing
calcium until osteoporosis sets in years later, so a strict GF diet
could help you avoid bone problems.  You may become slightly anemic,
and gradually start to feel run down all the time, and just attribute
it to older age.  A woman of child-bearing age might not be absorbing
enough folic acid, and only discover it when her baby is born with
spina bifida.  (PLEASE, if any of you have had this happen before you
were diagnosed, DON'T blame yourselves for something you didn't know
about!)  The list of possible and obscure maladies goes on and on, and
many of them don't show up until years later.  And all that time, if
you've been cheating on the GF diet, your villi have never gotten the
chance to fully heal.

I don't want all this potential "gloom and doom" to sound worse than
it is.  The fact is that no matter how hard you try, you will
occasionally eat gluten by accident.  As long as those occasions
aren't too frequent it won't matter much.  How frequent?  This is what
Dr. Murray had to say at a conference hosted by the American Celiac
Society in June 1994 (as reported in the March 1995 issue of _The
Sprue-nik Press_):  "How gluten-free should the diet be?  Dr. Murray
believes that celiacs should treat gluten the same way they treat rat
poison.  Celiacs should never eat food if it is known to contain
gluten.  Accidental ingestion of gluten should be avoided as much as
possible.  For a celiac, it is unacceptable for gluten to be ingested
more than once a month, accidentally or otherwise."

Sharon also wrote, "Sometimes, my lack of feeling anything leaves me
questioning my diagnosis; however, the tests were positive."

I don't know how sick you got before you were diagnosed, but perhaps
my daughter's experiences will be of interest.  She is like you:  The
few times she's gotten gluten by accident she did not react at all.
But we've never doubted her diagnosis, due to her experiences before
she was diagnosed.  She basically stopped growing at age two, and was
not diagnosed until she turned four.  By then she was anemic,
lethargic, thin in the limbs, and had a bloated stomach.  She no
longer had the energy to play and always wanted us to sit and read to
her.

At this point, we were in the midst of a month of testing, during
which time such lovely problems as cystic fibrosis and leukemia were
being ruled out.  Finally, a biopsy showed that she had CD.  When we
learned that to treat it we "only" needed to change her diet we were
ecstatic!

She grew so fast on a GF diet that we had to buy her new shoes every
month for four months.  Eighteen months later, she had grown 12 inches
and gained 25 lbs.  She is now one of the biggest kids in her 3rd
grade class, and is a picture of health and vitality.

Because she got so sick and then responded so well, we have absolutely
no doubt of her diagnosis.  We've saved her "before" and "after"
pictures for her teenage years, when she's likely to question the
diagnosis.  She may not react to accidental gluten ingestion, but with
her history we KNOW her diagnosis is correct.

I guess I'm trying to convince anyone who is a biopsy-confirmed celiac
to accept the diagnosis even if you don't react to eating gluten.
Don't let a natural wish to be rid of this somewhat troublesome diet
color your judgment about the diagnosis.  If you start to convince
yourself that the diagnosis may be wrong, then you will find it easier
to cheat on the diet.  For your own future health and happiness, if
you have a biopsy-confirmed diagnosis then accept it!

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