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From:
Allen Brown <[log in to unmask]>
Date:
Thu, 7 Jun 2001 19:26:47 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hi Folks,

Thanks to you all who took the time to write, I truly appreciate it.

The consensus is that lactose intolerance does indeed cause pain. The
good news is that I have been lactose free for about 4-5 days now,
(since finding out Allegra had lactose in it :) and I am already feeling
a lessening of the pain in my hip and back. The muscles around the area
seem to have loosened up and not in such severe spasm.  This is very
encouraging to me because I have been in pain for so long and therapy
didn't seem to be helping.  There have been a number of enquiries lately
about pain and there are some good suggestions here.

Some web sites were sent along to me as well which I am posting  below
in the summary.

**************************************************

I would suggest you to go to this other good site:
http://forums.delphi.com/n/main.asp?webtag=celiac&nav=messages
Very caring and knowledgeable people to asnwer your questions.

***************************************************

The site is
www.darifree.com.

Also listed was www.glutensolutions.com (GF, dairy, egg, soy and nut
free).

For cookbooks, the allergist herself (who is allergic to everything
including rice!) swears by:

Allergy Cooking With Ease - The no wheat, milk, eggs, corn, soy, yeast,
sugar, grain and Gluten Cookbook.

For hidden sources they listed what seemed sort of obvious but they
were: butter, buttermilk, casein, cakes, candy, chocolate, cheese,
chowders, cookies, crackers, cream, half & half, lactaid milk,
margarine, non-dairy products, sour cream, tuna (may contain casein,
whey, yogurt.

**************************************************

If you have  probs with cheese, which has almost no lactose if it's aged
cheese like cheddar, then you're are probably casein allergic as well as
lactose intolerant, as I am. Bummer.

*************************************************

Oh yeah - my lower back is aching some today (and it isn't because of
the rain).  I had a few shreds of cheese on my psuedo pizza last night.
If I keep eating it my muscles ache, my elbows, shoulders, hands, I feel
like an old rheumatoid athritic patient that has trouble opening door
knobs.  It hurts to carry a gallon of milk.  After I stopped all dairy I
was feeling improved within a week.  It is simple to try and stop dairy
and find out.  Doesn't cost a thing.

************************************************

Yes.  When I refrain from eating Publicks, a grocery chain in Fl.,
Premium Ice Cream my cramps in my legs disappear, plus the swelling  and
stiffness in my wrist.  Hope you will  have a good result, give it a few
weeks.

***********************************************

Go to:www.gfcfdiet.com/foodlist.htm  It HAS everything and yes, dairy is
hidden in many foods.

***********************************

I know that Kinnikinnick foods in Canada now carries a GF-CF food
line...it is their Alta line.  Their food is great, in case you haven't
tried it.  And shipping right now is really reasonable.  $10 for all you
can order.

*********************************

My daughter has experienced a remarkable absence of pain since going
strictly lactose free.  My reaction to it is not so severe, but it
certainly is the first year I have been free of allergy symptoms!

**************************************************

RE: Dr. Christiane Northrup's new book:  The Wisdom of Menopause...page
214:

Some women are sensitive to the arachidonic acid found in dairy foods,
eggs and beef.  It contributes to a larger amount of series 2
eicosanoids in these individuals, and they suffer from menstrual cramps
and arthritis when they eat these foods.  The symptoms go away when they
eliminate these foods.

I may or may not be celiac, but I don't tolerate grains very well.  I
have severe pain in my left hip...xrays show severe degenerative changes
in my left hip plus osteoporosis.  I increased my consumption of beef
and eggs the last couple of years and the hip got increasingly worse.  I
have not eaten very much dairy, in fact almost none in about the last 15
years.  I think the beef and eggs caused the arthritis to get worse.
Once I made certain that I was eating absolutely no dairy, beef or eggs
the pain is just about gone.

Pay attention to arachidonic acid and consider eliminating foods that
contain it for a while....see if the pain goes away completely.  I read
that corn oil and peanut oil contain arachidonic acid....I don't consume
either oil.  It may be the arachidonic acid in dairy that is causing the
problem NOT just lactose intolerance.  Good luck!

****************************************************

I am having muscle pains when eating anything I am allergic to, dairy is
one of them, lactose and casein, eggs, beans make similar reactions.  I
have mainly strong pains in the shoulder area and neck, it "blocks" my
neck when I have a full blown reaction. and yes, it completely
disappears after the rection fades away 7-10 days usually.

**************************

Try www.nomilk.com
It contains tons of info on lactose free stuff.

I did some checking on lactose free foods for a couple of people in my
celiac support group who must also be lactose free.  It is a bit
tougher, but not that bad.

Many of the GF mixes that you buy can be made without lactose.  The
Gluten Free Pantry chocolate truffle brownie mix can be made with
Fleischman's unsalted margarine (lactose free) in place of the regular
butter.   I also made a Sylvan Border Farms Lemon cake lactose free by
making it with orange juice instead of milk.  Most of them have info
right on the package.  PS  I think that Gluten Free Mall has a way that
you can put in all of your sensitivities and then you will only get up
foods that fit your profile.  A lot of the websites are like that.

******************************************

> Do they hide dairy like they hide gluten in food?

Yes they do.  And they even have the nerve to call it non-dairy.  For
example, cool whip is advertised as "non dairy whipped topping," but
it's loaded with casien.  Whey, casien, sodium casienate are all milk
derived proteins & in everything.  However, whey is the protein that is
better tolerated, so many on the GF/CF diet use margarine with whey in
it without any problems.

******************************************

I am also lactose intolerant.  A small amount of any dairy will lay me
out for a week or more in severe pain.  It goes through my system like a
really nasty two week virus!  It also strips out my insides like the
gluten does.

I have an even worse reaction to the milk dirivatives; casein,
casenate, whey, etc. than I do to just dairy products.   Please read the
labels and do not ingest any of these either.  Cool whip is one of the
worst for the milk dirivatives!

I am also mold intolerant (yeast).  I was still having many problems,
including being subject to pneumonia and having to use an inhaler in the
spring and summer, until my new doctor told me not to eat any YEAST,
MUSHROOMS, CANTALOPE, SPROUTS, or any other high mold content fruit or
vegetable.  I really miss these things but have not had pneumonia since
and am no longer considered subject to it.

The inhaler I had at the time is still in my purse and it has been over
3 years now.  I only need to carry it for when I walk into a moldy store
or area.  All because my new doctor knew enough to tell me to not eat
mushrooms, cantalope, sprouts, or any other high mold content fruit or
vegetable as well as yeast, which IS mold.

I am caffeine intolerant and MSG intolerant also, and sacharine gives
me bad indigestion.  All of these intolerances that I have can develope
later on in celiacs so watch out for them.  I am just now beginning to
suspect that soy may be starting to give me problems.  If this keeps up,
we will all just be eating dirt!  LOL

The pain:  I was having the same pain that you are having in my joints
and muscles until someone recommended taking more niacin.  I am no
doctor but along with the multi-vitamin I take an aditional 100 mg of
niacin per day.  After about a week of taking it, the pain stopped.  If
I go off of it, the pain comes back after a while, as well as the muscle
spasms.  So perhaps what you have is a vitamin deficiency or a niacin
deficiency.  Ask your doctor about it.

*************************************

Yes, I had the exact same pain after ingesting dairy products and it was
only because of this list that I realized 5 weeks after going on the gf
diet that I was also lactose intolerant. I've never been able to go back
to being able to ingest dairy products and have now been gf almost three
years. I was diagnosed late in life and now realize from all the
symptoms that I have had cd most of my life, but that the damage will
never be able to heal completely because U.S. docs did not know the
signs! Let me know if you find a "good lost, because i have also been
unsatisfied with the ones presently available.

**********************************

Boy oh boy, yes the dairy is hidden good.

I've been dairy free for about 7 years, faithfully at least 3.  At first
it was hard.  I learned most from going to my library.  I just kept
looking up dairy, allergies and other terms, cook books and such.
Trying to cook dairy free for myself was easy and then cooking soy free
for my son was easy, but cooking for both of us is where I ran into alot
of problems.  Some I just can't solve.  I must cook separate meals.

Through all this reading I found that there are hundreds of names.
Suppose-ably in the USA the FDA is going to help the average citizen get
the information from 'just reading the label', It's been better if
you've read some labels lately.  They may say 'This product contains
dairy products', frosting labels I believe are where I read that, this
past February.  I don't always feel comfortable with all the information
on the internet.

I've always, and still do, visit my local Library and look up and find
everything I can and read bits and parts, starting in the Table on
Contents and the index, and from there.  Some times I read the whole
book.   But I often consult several books and opinions before forming my
own.  Often the books can lead you to where you can get lot of
information.  Autism individuals are put on casein free diets along with
gluten free.  Casein being dairy, whey, there are more I just can't
think of them.  Even herbals, books on herbs and healing can offer
relief from pains or how to avoid.  And yes I get terrible cramping if I
eat dairy.  I don't eat dairy and I don't normally risk it.  I make my
pizza with out cheese.  I put the sauce on and pineapple, peppers,
olives and caraway seeds and other odd bits and pieces.  It's even more
wonderful because I won't get sick.  And it's the dough I always liked.
I use Bette Hagman's recipe from 'Gluten-Gourmet Cooks Fast and
Healthy', Even non-celiacs in my family love it, my son's and extended
family eat it with cheese, willingly.  If you double the recipe it's
thick and very filling.  My kids like it thin as possible.  I'm allergic
to the whole cow, beef and dairy.

**********************************

My boyfriend is lactose intolerant (but does not have
celiac disease.) He avoids products with milk, whey,
casein, butter, or butterfat, as all of these are
dairy-related.  He does use Lactaid milk as it is
completely lactose-free, however the Lactaid ice cream
causes him problems as it is only lactose-reduced
(i.e. it contains some lactose.)  He prefers to chew a
Lactaid tablet (actually Wal-Mart's Equate Dairy
Digestive Supplement) before consuming 'regular' ice
cream, as the tablet provides the same enzyme as in
the Lactaid ice cream, but at a higher dosage.  I
don't know if the Wal-Mart supplement is gluten-free,
though.

**************************************************

I have also found that potato/tomato/peppers and caffeine (at least tea)
can cause joint and muscle complaints for me.

**********************************

I don't have websites, but I have heard that there is at least one
website dedicated to people following the GF/CF diet.  GF/CF means
gluten free/casien free.  Gluten is the protein found in wheat, rye &
barley.  Casien is one of the major proteins found in milk that most
people are allergic to.  Gluten & casien are the two proteins that are
associated with allergies, celiac disease, and behavior disorders such
as autism, ADD & schizophrenia.

***********************************


Thanks again to everyone, and now I will go on to my treasure hunt of
finding  all the new foods I AM ALLOWED to eat, and be encouraged that I
WILL feel better! And of course I am grateful to have found all of the
information about Dr. Fine on this listserve, so that I could have the
test and find out that I was lactose intolerant  in the first place and
get a positive test result for Gluten intolerace.

Diana in RI

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