<<Disclaimer: Verify this information before applying it to your situation.>>

Dear Listmates,

Sorry this has taken so long to write, having company is a distraction!
Anyway, there are a lot of components to this summary, as I made a lot
of statements in my original post "For those who think they are GF".

First of all, I want to make it clear that Dr. Fine does not do testing
for "lactose" intolerance. He does testing for milk intolerance
(casein), which was positive for me. I discovered after eliminating the
milk and cheese that I was lactose intolerance, as many of the things I
was using (homeopathic remedies for example) were causing me distress,
which in my own conclusion, is lactose intolerance. I did speak to Dr.
Fine after I posted and he said you most certainly can be lactose
intolerant if you test positive for "Casein Intolerance". It stands to
reason for me. Anyway, several people wanted me to clarify that
statement. I also tested positive for yeast sensitivity, which I knew
would be the case, but I asked him if that meant I would have to stick
to a candida diet and he told me no, just stay away from nutritional and
dietary yeast. Hooray!

Since I have spoken to Dr. Fine, I wanted to let you all know that he
does not advise grains at all. He said a lot of people do not get well
until they remove grains altogether. He also does not recommend
processed foods (I don't mean junk foods, I mean something like beans in
a can for example). That follows the lines Kay Stence in Austin has been
trying to explain to us. I received a letter from Kay asking me to
publish a letter I returned to her. Basically in the letter I sent to
her, I explained that I was on a Candida diet for 16 years before the
Celiac was discovered. I stopped consuming sugar, went on a rotation
diet, discovered all of my food allergies, stopped eating processed
foods, and was still having problems until I discovered CD. I went on
the CD diet, thinking that it was not candida any more, and I didn't
have any flare ups of the candida. When I discovered the milk protein
problem, and was able to see the gluten still in my diet, it was in all
of those processed foods. I am not necessarily talking about junk foods,
just foods in general that you would think are safe. Things that had
been processed on the same lines as others.  I had a strange reaction to
Kinninikinnik chocolate chip cookies (Alta Line) that I ordered because
they were gluten and lactose free. I RAN to the bathroom all day. I
suggested it could be the sugar, Dr. Fine suggested it could be the
combination of flours! So.........I am now trying to get my diet cleaned
up even more without flours. Not easy, but can be done. There are still
lots of foods to eat. Check out the web site that Kay sent to the list
www.inform.dk/djembe/scd  . It is very helpful. Some people also
suggested to check out chemical allergies. I have been doing that also
for at least 16 years. I eat organic, use only safe cleaning solutions
in my home, and avoid chemicals (no perfume, bug spray, etc.)  I even
went to work in a health food store for 2 /12 years to be able to afford
all of this! The discount was great!  The bottom line is, I need to cook
everything from scratch, no processed foods, because it appears to be a
problem, contamination wise. I know this may seem excess to most of you,
but many of you may be still having many, many problems, like I have had
with the pain in my hip. It still continues to get better. I am willing
to do this to avoid the pain I was in and be able to go back to doing
the thing I love....volleyball. I HAVE even been able to do that for the
last 3-4 weeks. I had not been able to play since January, and when you
are used to playing 3-4 nights a week, that is very discouraging!  I
don't even have a problem sleeping from pain after playing anymore!

A comment was made that it was strange that I hated milk as a kid and
now I find out that I am allergic. In doing a rotation diet with myself
and my kids as well, over the years, I had found that if you HATE or
LOVE a food, you are usually allergic to it. Most of the books on food
allergies will tell you the same thing. I guess I missed that one (milk)
because I only ate hard cheese.

I also made a comment that I was having problems with Allegra, and
Benadryl.  At this point, I have made so many phone calls,and read old
messages on the archives, I don't know where I got the information that
Allegra is not GF, but several people informed me that Allegra in the
tablet form is lactose free. I reacted to the tabs, for whatever reason.
 I know from the phone call I made to the makers of Benadryl that they
do not guarantee any of their products to be GF. The upside of this line
of my conversation, is that I no longer need an antihistamine. I never
took them until this spring, because my body was so out of sorts, I had
to do something. I no longer need them (since removing the grains
altogether).

So.....here are some of the comments I received:

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Don't you mean casein intolerance?  Lactose is a sugar.  Dr. Fine
doesn't do a lactose test, as far as I know.  Casein is a protein, and
he does test for that. There is a lot of confusion amongst celiacs about
lactose/casein, and if you did indeed test positive for casein
intolerance, it would be helpful for you to post a letter to clarify that.

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Claritin, the Reditabs only, is free of both. That's what I take and it
really helps.

You might like to know that people who do not drink milk will
automatically become lactose intolerant in two or three years.  And
sometimes we become that way as we age.  But half of celiacs are, and
almost new celiacs are if they've had enough damage to show up on a
biopsy.

Do you have a copy of CSA's products listings? Saves a lot of pain and
effort.

Thanks for the help, Diana. That's what I've been trying to tell them
for some time now.

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Diana, typically the lactose problem is an intolerance and tends to
manifest as gastrointestinal distress, and often as sinus problems.
Casein, however, is typically an allergy may manifest in other ways. In
my case it's very frequent urination. Autistics will have problems in
behavioral manifestations.

But as to your question, if you have problems with casein, yes that
would also probably rule out your access to most dairy products.

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Hi!  I buy my tortilla chips from a local Mexican restaurant that makes
their own corn tortillas and chips, so no cross contamination problems.
You might call around where you live and see if you can find a similar
restaurant.  The Anchorage restaurant I use is La Mex and it is not part
of a national chain.

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You're absolutely right, Diana!  I don't think there's much out there
that's bottled or packaged that's not contaminated.  That's why I cook
everything I possibly can from scratch and am encouraging everyone on
this list to do the same.  With all this GE stuff, we're sometimes at
risk there, too.  I also find that rice, corn, potatoes, and sugar keep
many people from really healing (since the high starch feeds the bad
bacteria in the intestines and causes bacterial overgrowth), so that
when they do consume gluten accidentally, they get an even worse
reaction than they would if the flora in the intestines were healthier.

Eat healthy

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The thing is make everything from scratch , one can make potato chips in
the oven, eat fresh or some frozen veg , get all flours from authentic
foods as they are the only gf totally gf in USA

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FYI if you did not know lactose is the sugar in milk and casein is a
phosphoprotein of milk, which has a molecular structure that is
extremely similar to that of gluten.

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Howsomeever, one more thing you surely do not want to even conceive of
at this juncture, have you considered that you might also have other
food allergies/intolerances?? My sister is not diagnosed (yet) as
celiac, but is horribly, horribly intolerant of all, any, bits, smidgens
of corn or corn products....this eliminates a lot of foods for her. As
it is more difficult to wade through all items containing corn (yes,
possibly even harder than WORB), she gets sick more often than you can
imagine!

Then you probably don't care that my sister (above) and Mom
(self-diagnosed celiac, very reactive) are both HIGHLY ALLERGIC -
INTOLERANT OF GAS: COOKING GAS, HEATING GAS!!! Thus far, Mom has yet to
get a doctor to even consider multiple chemical sensitivity. Her
problems have escalated over the years, but she has them mostly under
control now.

The upshot of my 2-cents-worth is that you might need to monitor
everything in your life for a while to determine what might be your
problems. If Mom had only known to do that years ago, she could have had
fewer years of suffering.

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be very very careful with this!  i just found out the same thing from my
doctor about 2 weeks ago and, like you, have already noticed a dramatic
difference.  BUT, for me (and my understanding, most celiacs w/ this
problem) lactose has nothing to do w/ it.  it is the protein found in
mammal dairy products - caesin.  this is in so many different products
and is not listed as "dairy".  all lactose free cheeses, etc. have
caesin in them.  a good way to know for sure that something is dairy
free is by seeing if it is "parve".  this is a term that is used on
kosher foods b/c those who keep kosher to not mix meat and dairy
products and so look specifically for this.  i was lucky enough to grow
up keeping kosher and so I knew right away what to look for.

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some people have food allergies on top of celiac--just because a food
causes a problem to sme celiacs doesn't mean it has gluten

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I don't know any celiacs who eat prepared or junk food, because we don't
know what's in it. If you do you are asking for trouble. I cook for
myself and the few friends who cook for me know what to do or call me
and ask. When I eat out I order salads, my dressing, quiz the staff
about what's on the chicken, etc. You cannot eat like you used to. And
you'll be so much healthier without all that greasy, fatty, carbo stuff!!

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if you are still looking for a gf and lactose-free antihistamine, try
claritin kids (liquid).

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Do an online search for Rich's MSM.  The stuff is
great for almost whatever ails you, including
sinusitis, allergies, and skin problems.

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An interesting thing about Allegra - the capsules have lactose in them,
the tablets do not.  My husband is milk, egg, wheat intolerant - results
found when his allergist (seasonal rhinitis) suggested that people with
environmental allergies frequently have food allergies as well.

He is getting desensitization shots for the allergies but still gets the
best results from Allegra.  When I read on this list about the lactose,
I went to the company website and read the ingredient list for the
tablets - all are "clear" of milk and wheat.  I questioned the poster
who said it had lactose and he replied that the capsules had lactose.  I
have since seen lactose in other capsule preparations.

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Isn't it strange that you always hated milk, and now
you come to learn that your body hates it too.  I
always hated sandwiches as a kid (although the cakes
and pies were wonderful to me), and wasn't much for
eating bread products.  I just would not eat them, and
I loved cornbread.  I always wonder if there was a
connection there between the body and mind.  I crave
milk.  Can put down a gallon of milk in 2 days.  My
nutritionalist asked me to stop the milk products when
I was first diagnosed.  I refused.  I sure hope I'm
not lactose intolerant too.  I'd just die.
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Thank you all for your wonderful responses. I appreciate it, and again,
you have all helped in some way or other.

Diana in RI