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From:
Alex Levin <[log in to unmask]>
Date:
Sat, 9 Oct 1999 01:55:33 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

Wow!  After dealing with my problems for so long all my lonesome, what a
blessing it is to receive so much support and information so quickly. I
received 41 responses to my inquiry  about joint inflammation, ankylosing
spondylitis and prednisone. And am still receiving them, but as time has
passed I thought I would summarize.

PREDNISONE
With regard to prednisone, only one individual talked about having a
possible gluten reaction; however, several did recommend calling the various
suppliers to find out whether it is gf or not.   Seven people said that they
or their gf relatives responded well to prednisone;  that it did get
inflammation under control.  A few commented that it was bad stuff and to be
avoided at all costs, citing that it causes bloating and weight gains, and
makes one susceptible to infection and osteoporosis. Gastritis is also
another problem. In conclusion, as I suspected from my own experience
prednisone is a great soldier in the war against inflammation, but like an
over-trained soldier, it doesn1t know when to let up.  Significant
osteoporosis can occur after just a few months of use and is almost a
guarantee if it is used indiscriminately over long periods of time. Also,
don1t let blood calcium levels fool you into thinking you1re not calcium
deficient.  The blood will get to a normal calcium level at the expense of
the bones.   For one lead on GF prednisone a writer referring to the Stokes
Pharmacy Book suggested Mutual Pharmaceuticals - 800-523-3684

OTHER MEDS:  GOOD AND BAD
Just about all those who wrote of  NSAIDs complained of unacceptable side
affects. One woman recommended a NSAID called Voltaren.  3It has worked
wonders,2 she said. One person suggested celebrex -- the new  wave of NSAIDs
which are supposed to be kind on the gut -- but my personal experience with
such was no different than Motrin, Napryson, Indocin, etc. -- more pain than
relief.  One person wrote that 3For Arthritis, my doctor ordered me Zorprin.
This is a form of asprin that bypasses the stomach and dissolves in the
intestines.  It is gluten free.  And it works for me a celiac.2  My own
negative experience with Ecotrin suggests that people try this with caution.

Other alternative drugs were suggested.  They included
glucosamine/chondroitin.  A few people wrote about having great result with
arthritis relief with this combo over the counter med.  One person
reccomened a product from Melaleuca 3called Replenex which is glucosamine
HCI (the most absorbable kind).  The dosage recommended by Michael T. Murray
is 3000 mg until you get relief, then reduce to a maintenance dose of 1500
mg daily..  Another brand reccomended by two people is Pain Free by Schiff
which the writers claimed to be gluten and lactose free.   I have personally
tried glucosamine chondroiton with little result which made me find the
following comment interesting.

My ortho doc told me that the stuff from  the health food store was not
regulated, and may have half or even none of  the advertised ingredient. He
told me to get Cosamin DS, and after a month and half it started to help a
lot. It made my arthritis about eighty percent better.

So many people are taking this drug with such success, and as it has no
downside, I'll probably try one of these brands.

Others wrote:

I usually take L-glutamine when I get an inflammatory attack. I take one
with each meal and then taper off to one a day and then none. It seems to
help heal the inflammation.2

. . . glucosamine/chondroitin and SAM-e, both make the
arthritis get better over time. They are reported to actually cause people
to start growing back some of the damaged cartilage. Newsweek has had two
long articles about SAM-e, and CNN has had stuff on it three times.
(I did a little research on SAM-e and if this natural product is half as
effective as people claim for depression-- not for bi-polars-- liver
problems and osteoarthritis, we1ll be hearing a lot more about it.  Check
out .http://www.immunesupport.com/product/same_offer.cfm)

I have been taking Priloec for year and a half.  Astro Merch at
1-800-336-9933 says the product is GF.

  I control the arthritis with occasional ASA or Advil.

  MSM is sulphur for inflamation

. . . ProVex and ProVex Plus.  The ProVex product is grape seed extract and
the Plus' has added grape skin extract along with gingko biloba and bilberry
and citrus bioflavonoids.  I have done a lot of research about these
ingredients and they do a lot of wonderful things for your body naturally.

They are natural anti-inflammatories, circulation enhancers,
anti-histamines, etc.I have had great results. . . .

DIET & INFLAMMATION
As we all too well know diet is always a consideration in dealing with
illness.

I recently had a bout of serious illness due to taking vitamins that turned
out to have microscopic amounts of gluten in them.

I believe nightshade vegetables are a culprit - something to look into.

You might consider joining the low carbohydrate diabetes list and/or the
paleolithic diet list, both at StJohns where this celiac list is.  Yeah, the
people are a bit strange and opinionated, but many of them are healthier on
these extreme diets than they ever were before.

A second writer  also suggested the Paleolithic diet and I must say I was
skeptical until I read the information and discovered that its
reccomendation of high proteien, low carbohydreate with plenty of fruit is
exactly the diet that works for me when flare ups threaten to take me over.

The Paleolithic diet is based on the notion that our guts have not evolved
fully from our hunter gatherer days. meaning we have yet adjusted to the
ingestion of cultivated grains of any kind. Worth a look at
http://www.PaleoDiet.com/

Remove all polyunsaturated oil from your diet immediately.  Dr. Andrew
Weil's latest newsletter recommends eliminating them because they cause
inflammation.  Use only a little olive oil (mono fat), butter (if you can
tolerate dairy)...if you can't tolerate butter you may want to use a small
amount of ghee (butter with the milk solids removed).

I read Eat Right for Your Type by Peter D'Adamo. Basically he said that
one's blood determines one's immune system. It reacts to proteins, not only
in bacteria & viruses but also the proteins in foods.  One line caught my
attention & has changed my life.  He said in blood type O, the protein in
potatoes can cause inflammation on the surface of the bones and cause bone
pain.    In my years of being g.f. I ALWAYS had bone pain. . .  Within one
week of eliminating potatoes, the bone pain was gone. . . . I have
challenged a couple of my Type O friends to try it. . . . Both found
improvement.

I find that fresh mango by itself or fresh papaya with orange juice and
honey does wonders for your insides. It feels like a healing ointment.  I
eat about 6-10 pecan halves daily.  I read that it helps to keep your joints
oiled.

You may look for food allergies. A food elimination diet, then add things
back very gradually while looking for recurrences of symptoms.  That is
assuming after 1-4 weeks of elimination diet has improved problems.

I had to give up all grains.  I now use a little mung bean thread or
garbanzo flour occasionally to vary my menu.


OTHERS PROBLEMS

.  According to an MD who responded

Most likely, you are absorbing incompletely digested proteins called
peptides which  normally are not absorbed and pass out in the stool.  This
is called a leaky  gut.   In the blood, these peptides are attacked as
foreign bodies by the immune  system.  The resulting battle causes things
like ankylosing spondylitis, arthritis, chronic inflammation  of the whole
body. and others.  You will need an expert to help  you with this.  Dr Peter
Green in NYC on one coast and Dr joseph Murray at the  Mayo clinic in
Rochester MN are the only ones I know of specifically expert inCeliac
disease.

Two other writers wrote about the sketchy link between celiac disease and
other auto-immune diseases.

Sarcoid and celiac are genetically related, and are often found in the same
families and sometimes in the same people. It usually manifests itself
primarily as a lung problem, but can occur anywhere.

Both Chlamydia and Mycoplasma are organisms which are being looked at as
causes of arthritis. They are also very small and overlooked in villi
biopsies. Perhaps your problems now are because of a chronic infection????

I apologize for the length of this summary but just too much good stuff to
leave out.  I was totally amazed by the volume of good information that
people sent me and especially touched by people1s understanding and
campassion.  Thank you.

Alex
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