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    I got interested in celiac disease as a result of my interest in cystic
fibrosis.  I am a massage therapist  interested in causes of FMS and chronic
pain.  This is one of my hobbies.  I read in Dr. Devin Starlanyl's book on
FMS that she'd noticed that a lot of FMSer's have trouble with "thick
mucus".  I got out the Merck Manual at that point, and found that the
carrier rate for Cystic Fibrosis is 4% of the US population.  Hence my
interest in CF.  So I hung out on online CF support groups, and there found
a local email address, sent her my phone number, and we talked on the phone.
Her daughter was diagnosed with CF at a few weeks old.  She was being
treated through Vanderbilt.  At some point Vansy wanted her for their long
term study, so they did a genetic test on her.  When they went back, the
research doc told them she had only one gene for CF, though she did have
another "unknown" abnormal gene.  He said, "she's normal, take her home".
The mom protests that she has all the symptoms of CF.  The doc says he
doesn't care, she doesn't have it.  Then they found out that the kids'
grandfather has celiac disease.  They tell the Vandy doc who actually TREATS
her, and he shrugs and says it's very hard to tell CD and Cf apart.  Both
can have abnormal readings on sweat tests, and as far as he is concerned the
tx is the same, lots of digestive enzymes.
    When I brought this up on another CF group, one person said they are
probably the most diagnosed CFer on the planet, yet had one doctor who
insisted it was only Celiac, got him to GF for a year, it didn't help any so
he quit the diet and his doctor had a fit.  I sent some of my massage tricks
for tight chests to a young man I correspond with who was diagnosed with CF
some 25 years ago, as a small child.  He told me he eats gluten and dairy
free, and that he has coughed up gallons of mucus in his lifetime.  I ask
myself, has he got a CF gene with a "bad modifier" and a CD gene?  Two CD
genes and one CF?  Hard for me to imagine that he has double genes for CF
plus one for CD, I don't think he'd even be alive now.
    When you look into the absorption problems of CF, you find that they,
like celiacs, have poor absorption of EFS's and fat soluble vitamins.  They
absorb zinc poorly, and lose lots of salt.  I believe that CF carriers have
some problems with these as well.  A CF carrier is considered "normal" but
actually has only half as many "salt channels" in his cells as normal
people.  Researchers suspect that CF carriers may have modified reactions to
many environmental effects.  Some suspect that carriers are protected from
cholera and other forms of diarrheal diseases.  One study shows that among
chronic sinus sufferers, the CF gene is 5X more common than the general
population.
    So some of you celiacs with only one of the known genes, especially some
of you who don't respond all that well to the GF diet, may want to consider
the possibility that you are a CF carrier.  Maybe supplementing EFA's and
fat soluble vitamins and taking digestive enzymes would help.    Donna

P.S.  I went GF as a result of my research.  My chronic diarrhea of 18
months duration quit in 4 days.  I have terrible gut pain the next day if I
eat gluten.  I have not been tested.  If I spend money on tests, it will
probably be on Dr. Fine's  test for my grown offspring.  Too may false
negatives on the blood tests.   My grandmother and her uncle shrank from
osteoporosis, and my aunt has NH lymphoma, which I read is the number one
cause of death in untreated celiacs, in Italy at least.

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