<<Disclaimer: Verify this information before applying it to your situation.>>
 
Michele Kratzmeier <[log in to unmask]> wrote:
 
M? 1)  Since it is an inherited disorder -- does that mean that my
M?     husband or myself have it and (a) don't know it (ie. symptoms
M?     are mild) or (b) haven't been exposed to the trigger yet?
 
The following comes from the FAQ, which you can get by sending a
message to [log in to unmask] containing "GET CELIAC FAQ":
 
FAQ> The onset of the disease seems to require two components:  genetic
FAQ> predisposition (two specific genetic markers, called HLA
FAQ> subfactors, are present in well over 90% of all celiacs in
FAQ> America), and some kind of trigger.  The trigger may be
FAQ> environmental (as in overexposure to wheat), situational (perhaps
FAQ> severe emotional stress), physical (such as a pregnancy, an
FAQ> operation), or pathological (a viral infection).
 
I believe either (a) or (b) is possible.
 
M?     Should we all get tested or will the antibodies not be present
M?     unless the celiac is active?
 
In a post to the list on June 13, 1995, Dr. Alessio Fasano answers this
question:
 
F> Different story would be if he is a first degree relative of a
F> proved CD patients.  Since the prevalence of CD among first
F> relatives of celiacs is higher then in the general population, it is
F> now general recommendation to screen them for the presence of
F> antigliadin and antiendomysium antibodies in the blood, despite the
F> [absence] of symptoms resembling CD.
 
M?     Is there a way of telling if
M?     we are prone to developing this disease?
 
The following comes from a speech by Dr. Martin Kagnoff, at last year's
CSA Conference in San Francisco, as summarized in the December issue of
_The Sprue-nik Press_:
 
K> Next we need to look at HLA Class II DQ gene typing tests.  These can
K> be useful in eliminating the possibility of CD, as CD is virtually
K> unheard of unless you have one of the two DQ markers we discussed
K> earlier.  Of course, the converse is not true:  The vast majority of
K> those which DO have one of these markers also don't have CD, so all
K> you can say in that case is that CD remains a possibility.
K>
K> The HLA typing tests are also useful in determining for the siblings
K> of a celiac if CD can be eliminated as a potential future concern.
 
 
M? 2)  Are there varying degrees of being celiac?  What I mean is
M?     could something like toaster crumbs affect one person and
M?     not another?
 
I think there are varying degrees of symptoms, and varying reactions
to accidental ingestion of gluten; but I don't think there are varying
levels of "being a celiac".  Regardless of whether or not any symptoms
are apparent, or any reaction occurs, gluten causes villi damage in
celiacs.  There is some disagreement as to whether or not there is a
minimum level of gluten consumption that is safe for celiacs, but no
hard evidence as to what that level might be.  My local support group
advises our members to avoid ANY actual or suspected source of gluten,
advice that I agree with wholeheartedly.
 
M?     My son doesn't have any the classic symptoms.
M?     In fact, his diagnosis was a result of trying to rule out
M?     what he did not have -- the doctors were trying to figure
M?     out why he hadn't gained any weight for over a year.
 
More and more people are being diagnosed with symptoms that are not
the "classic" symptoms (though I believe CD is still woefully under-
diagnosed).  One of the questions in the FAQ file I referred to above
is, "What are the symptoms of celiac disease?".  The answer gives a
long list of symptoms.  "Failure to thrive" is one of the symptoms
listed for children.
 
M? 3)  How harmful to the villi is it if he slips occasionally,
M?     like me allowing him to eat McDonald's french fries once or
M?     twice a month?
 
You'll get different opinions regarding this.  The problem with fries
at most restaurants is that they are often cooked in the same oil
breaded foods are cooked in.  There will be some cross-contamination
from the breaded foods.  My reasoning goes like this:
 
   1. There is no established "safe" level of gluten consumption for
      celiacs.
   2. No matter how hard we try, we will consume some foods that
      contain hidden gluten.
   3. Therefore, always avoid foods that you KNOW have gluten, or that
      you suspect could have gluten.
 
Since McDonald's french fries are cooked in the same oil as their
breakfast hash browns, and their hash browns are not GF, we avoid
McDonald's french fries.  When they have a real hankering for french
fries, we go to one of the Wendy's or Burger Kings where we KNOW they
cook their french fries in a separate vat.
 
I believe our "no-tolerance" GF policy has reaped its reward with our
celiac daughter.  She did not grow AT ALL the two years prior to her
diagnosis at age 4.  She promptly grew 12 inches and gained 25
lbs. in the 18 months following her diagnosis.  (It gives me the
shakes to look back at pictures of her at the time of her diagnosis.)
I've heard of similar turnarounds by other celiac kids in our support
group, when on a strict GF diet.  I can't emphasize enough how
important I think it is to avoid gluten as much as possible.
 
Jim Lyles ........ <[log in to unmask]> ........ Holly, Michigan, USA