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Hi -
Once again our family has learned the hard way that constant vigilance 
is the price we must pay for staying healthy.  Listen to our tale of 
woe and remember it is up to you and you alone to always, always read 
the labels and check with the manufacturer.

We recently saw a new doctor for my 15-year old daughter (who, in 
addition to having celiac disease has other health problems - acid 
reflux, nausea whenever she eats, joint problems, headaches, chronic 
sinus infections, etc.).  After meeting with this doctor, we were very 
encouraged that the doctor understood our daughter's problem and she 
set our daughter up with enzymes, herbs, and probiotics which she sold 
us.  Her remarks about the supplements indicated that she was 
particular about which brands she carried and she seemed to know quite 
a bit about them.

Our daughter began the new supplement regime and her constant nausea 
lessened, but she started having other symptoms.  At the same time she 
started school so we attributed the new symptoms to carrying a heavy 
backpack, stress, menstrual cramps, etc.  It was only after she had 
taken the new supplements for two weeks that I happened to scrutinize 
the bottle for the enzymes she had been taking with every meal and 
noticed two suspect ingredients:  malt diastase and starch. Yikes!!!!

  When I called the distributor (the pill is Total Enzymes by Micro Tech 
Pro in Mesa, Arizona), he couldn't tell me the source of the starch or 
the malt diastase.  He said people with allergies to barley aren't 
allergic to organic barley, only to hybrids.  I had to explain to him 
twice that celiac disease is not an allergy and that people with celiac 
disease react to a protein that is found in even very ancient forms of 
wheat and barley, not just hybrids.  Ultimately he gave me the phone 
number for the person who formulated the supplement and said perhaps he 
could answer my questions.  I called the formulator and left a message. 
  When he called back he spoke to my daughter (I wasn't home) and was 
very defensive and hostile, claiming there was no starch in the 
product, insisting she must not be reading the label correctly, etc.

So we still don't know definitively what is making our daughter sick, 
although her symptoms are consistent with gluten exposure.

The only information I have been able to find on malt diastase was in 
another celiac list (glutenfreeforum.com) - one person quoted an 
unspecified source as:
Malt diastase is a carbohydrolytic enzyme useful for digestive support 
and general nutrition support. Malt diastase is characterized by the 
ability to break down amylose and other polysaccharides. The enzyme 
works with amylase and glucoamylase to digest carbohydrate rich foods 
such as grains as well as malt, maltose, and sugars. Malt diastase is 
also known as maltase. It is produced by the cells lining the small 
intestine.

Another quoted a source (also not specified) describing how malt 
diastase is made:
Malting - Steep barley in cold water for 2 to 3 days, draining water 
roughly once a day. The slowly stir the barley. As the wet grain comes 
in contact with the air, germination begins. This process creates 
enzymes, malt diastase being one of these, is responsible for turning 
starch into sugar. After about six days of germination, the barley can 
be considered as malt.

The discussion at glutenfeeforum.com went back and forth and ultimately 
the conclusion was murky.  Some supplements that contain malt diastase 
call themselves gluten-free, and perhaps they are.  Some folks with 
celiac disease take these gluten free supplements containing malt 
diastase and have no ill effects.  Some people with celiac disease 
react to supplements that contain malt diastase (that may or may not be 
labeled as or actually be gluten free).  There is no simple yes/no 
answer as to whether malt diastase is safe for celiacs.

For our family, we will be avoiding malt diastase and also all 
supplement companies who can't tell us what is in their products.  We 
are sticking with the doctor, but we will no longer accept her 
supplement recommendations without doing our due diligence.  Our 
daughter is still feeling poorly, but we are hoping that now that she 
is no longer taking the questionable pill, she can start healing and we 
can move on.

Our conclusion after all of this:  Don't ever get lulled into 
complacency because you think you are in competent hands.  Even health 
professionals make mistakes.

Jackie in AZ

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