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Dear Listmates,

Thank you for your valuable suggestions and input.  Here is a summary of
responses to my post regarding Prednisone.  I'll warn you now, it's pretty
long......

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Just a thought -- any chance of learning what Prednisone does and trying to
accomplish some of that through diet and/or supplements? I'm sure you know
more about it than I, but I'm thinking of how some foods mimic hormonal
effects.

try a teaspoon of Metamucil every day until
you settle down ... it might save a few trips
to the bathroom.

Have you thought of going off milk?  Maybe it would help.
Also check and recheck your diet for gluten.  It took me a very long time to
find all the hidden glutens. Hope you feel better soon.

I am with you.  However, a second biopsy did say that I was healing but
still remained bathroom dependent.  I too have gone throught a round of
prednisone.  I am very concerned about being on prednisone because of the
side affects, so have opted to not take prednisone.  I feel like there is
something that we haven't discovered that is causing the diarrhea, so I
keep searching.  The protein in milk has definitely been a contributing
factor.  I had eased off, but am making numerous trips to the bathroom, so
guess I had better get with the program again.  I would be interested in
hearing anything you do come up with.  I have decided there are no two
celiacs alike.  We all have our idiosyncrasies!!!

Sorry to hear that you're in so much distress; I can relate. I have read that
about 5% of celiacs have something called refractory sprue, which means that
the villi doesn't grow back and the person doesn't heal. I was really fearful
that I had this, since for at least a year after being strictly GF (I thought)
I was still feeling pretty lousy and having symptoms (gas, bloating, cramping,
pain, great fatigue, general malaise etc.). I was getting very discouraged and
was about to submit to many invasive tests by my GI; she was very happy I was
doing this, but I was very skeptical. I decided to hold on all these tests and
I am really glad that I did. Then I found out, after much research, the
following things: I was getting gluten in my supplements, my progesterone
tablets, various vitamins etc. I stopped taking all those things and got
somewhat better, but symptoms persisted. Then I had the Elisa Food Allergy
panel, IgG4 done. I was highly intloerant of eggs, dairy and corn, so I
immediately stopped eating those products. Improvement but not well yet. I was
getting very discouraged and depressed over all this and thought I was never
going to feel good again (it had been 25 years of hell with undiagnosed CD
prior to my diagnosis a year and a half ago.) Then I found out that I had
mercury poisoning, Epstein Barre virus, and coxsackie virus (a form of polio
transmitted in the polio vaccine itself; I got all those things detoxed out by
my wonderful naturopath; also candida was present and got dealt with by detox
and diet). Still dragging and wierd sensations and symptoms. Then last
December, a fellow listmate told me about her fabulous doctor in Tucson and
how he had diagnosed hypothyroidism and many other nutrient deficiencies for
her. I contacted him (all work done via phone; I'm in Atlanta and have never
met this doctor). My lab work showed I did indeed have low thyroid function
(for 5 years I had been telling doctors this locally, but "normal, normal,
normal"...very hard to get a correct thyroid diagnosis). Also I have been
seriously lacking in about 7 major nutrients and am now taking all these
things, plus all natural thyroid hormones and wow! for the first time in my
adult life, I feel GOOD. I still get digestive symptoms when I do wrong food
combining or get some cornstarch somewhere etc. I have such a damaged
intestinal tract from all the years of eating gluten as a celiac, that I think
I will probably always have GI weakness. My friend, also a celiac, tells me
that the thyroid meds over time will lessen these GI troubles, so I am hopeful
that is true.


I've been treated with Gastrocrom for a year, which has
helped me, along with a gluten-free diet. This was sort of
an experiment for my doctor, as it is mainly used for an
auto-immune condition called mastocytosis, but I had a high
white blood cell count and eosinophilic gastroenteritis,
which is a similar auto-immune condition. My white blood
cell count slowly returned to normal, and my bathroom
habits are nearly normal too. My doctor just decided to
try reducing the dosage. The Gastrocrom was the only
alternative to Prednisone for my condition, and it has far
fewer side-effects, practically none, I understand. I don't
know whether it would work for you, but if the Prednisone
helped, this might, and it might be safer; you could ask
your doctor. By the way, my doc agrees that I'm gluten-intolerant, but he
refuses to run any of the blood tests for celiac disease, so
that is not my diagnosis. He found the EG after a gluten
challenge and biopsy. He thinks my gastroenteritis may
clear up altogether, but so far, if I eat any accidental gluten,
I get sicker than ever! So I'm not going through another
gluten challenge. The first one was horrible enough.

I'd investigate other possible food allergies.  I'm terribly affected
by soy, and have some lactose intolerance as well.   Others are bothered by
corn, potatoes, you name it.   It's worth experimenting-

I also live in here in Lombard and have been diagnosed with Celiac 8 years
ago. I was like you are until I was diagnosed and after going on the diet I
have had only only occasional bouts, and not really diarreha,  I suppose I get
gluten from the hidden ones.  My doctor is very good and understanding .  I
wish there was ore than I can tell you but I know the diet works great for me.

There are a number of reports in the literature that suggest that soy
and/or dairy protein may also need to be eliminated where there is still
villous morphology on a g-f diet. I have appended several citations and
abstracts below, but do not have time to do a thorough search.  You and your
physician may wish to consider either antibody testing to
identify reactions to additional dietary proteins, or an elimination diet.

My nutrionist gave me the following formula to heal a "leaky gut"

At each meal take one L-glutamine capsule (500 mg) and one
megadopholus (or some other powerful "yogurt" capsule).  It will take some
time to work, but I started seeing a difference rather quickly. By the way,
have you check to make sure your medication is gf and lactose free.  Wheat and
milk are used as fillers in pills and capsule.  You can check with Stokes
Pharmacy in NJ (they do have an 800 number.)

I took the Prednizone for about a year b4 I was able to get off it.  Had lots
of healing to do.

I have been on a GF diet since 3/97 when I was diagnosed with CD.
Unfortunately, my symptoms have not gone away.  I am still bathroom
dependent.  It has been suggested that I go on Prednizone but I declined
due to the side effects of bloating, weight gain and bone thinning.

It sounds like you should get gluten free and 100% grain free.
Glutens are a group of proteins called prolamines. These prolamines are
found in various forms in all seeds - grain and otherwise as they are a
protein source for the developing seedlings that sprout from the seeds.
Unfortunately, our immune systems can be fooled into thinking that they
should react to all prolamines, effectively eliminating all grains,
grain derived products, seeds and seed derived products from our safe
food lists.

Try going to a fresh vegetable, fruit, and organic beef to tolerance
diet. Stay away from milk, cheese, poultry, farm raised fish, lamb,
pork, and all processed foods as they are very likely to either contain
grain derived products or have been feed grain (gluten has been shown to
show up in the milk and blood of animals feed grain).  Find a safe diet and
stick to it for 18 months to give your gut a chance to heal. Only then can you
reintroduce foods not on the safe list. Find a source of safe B-12, Folic
acid, Calcium, and a multi vitamin - usually synthetics are safest. Try L-
Glutamine, an amino acid, as it  is said to help the Leaking Gut Syndrome that
most Celiacs suffer from.
Leaky gut is a condition were the cellular structure of the intestinal
lining does not heal properly allowing the long-chain amino acids that
are produced in the digestive process of protein to enter causing a
localized immune system response. This is exagerated by the
malabsorption of B-12 the vitamin linked to the proper volume of stomach
acid production - low stomach acid production does not allow the
log-chain amino acid string that form proteins to be properly broken up
there by fooling the immune system.  Get to your safe diet, stay on it with no
variation, and give your intestines a chance to heal.

   I hope you don't have to continue with the Prednisone.  My mom was
diagnosed with Crohn's disease several years ago, and was prescribed
Prednisone for the inflammaiton.  It has caused her to have severe cartilage
loss in at least one wrist and no telling what other long term effects.  She
has tried so many different things, I wish I knew what to tell you had
worked for her.  I know she has had good reaults with lomotil and immodium,
but sometimes even they haven't worked.  I got her to try FOS at Christmas
and she said it helped stop her diarrhea really quick!  If you can get some
at the health food store, you might give it a try and see if it helps you.
It certainly can't hurt.  I got it for my celiac children because I think
they can use all the help they can get for their intestines.  It is a
natural sweetener, so we can sprinkle it on cereal or put it in milk and it
tastes fine.  (We have some in capsules that was in the refrigerated
section.  It has the good bacteria you need for digestion.)

Just a question . . . Is there ANY chance that you are getting gluten
someplace that you aren't aware of?  Such as in your vitamins or a
prescription or hmmmm toothpaste?  Mouthwash? Just thought I'd ask because it
must be very frustrating for you to be following the diet and not have your
body respond as expected.

My sister was taking (and may still be) Prednizone for sinus trouble and she
started to have GI problems. A doctor told her that sometimes people taking
Prednizone start to have trouble digesting all starch, and she was told to
stop eating it! You might want to ask your doctor about this.

I have celiac disease, systemic lupus and autoimmune thyroditis, so have
to be on prednisone.  It is NOT gluten free!  Not in the generic, nor in
the name brand.  I have mine made by a compounding pharmacist who puts
it in capsules with ginger powder (which helps the tummy) to fill the
capsule. The reason it helps you is because it cuts down on inflammation in
your gut, thus stopping the diarrhea, but at the same time you are doing
damage because of the gluten in it.  Try to get the package insert from
your pharmacist and you will see wheat starch or other gluten-full
ingredients on the list of inactive ingredients.  Most medications are gluten-
containing because they are inexpensive for use as fillers. If you are on any
other medications, you may want to check their package inserts, also, since
you seem to be having trouble continuously.  Most of my meds I have to have
made by the compounding pharmacist.  Expensive, but it keeps my totally
gluten-free.
Also, since you asked about being on prednisone for an extended amount of
time.....try not to do that.  It can have drastic side effects with long-term
use such as bone loss, aseptic vascular necrosis and Cushing's Syndrome.  I
*wish* I didn't have to take it.  Perhaps your diet isn't completely
gluten-free?  Are you eating things with carmel coloring in them?  Artificial
flavorings?  Many, many things have hidden gluten in them.  Maybe you're one
of us who cannot eat corn-based products?  I found out the hard way that I am
one of them.  There again, if you cannot digest corn-based products, there
are many things that have hidden corn products in them.  It's best to try a
totally fresh-food diet, nothing packaged at all, and see if you feel better.

You might want to write to Dr. Murray as he is very interested in refractory
sprue.  His recommendation is to first check the diet (call about everything
you eat even medications), look for enzyme supplements to help with digestion,
check pancreatic problems, lympoma bacterial overgrowth, etc.  His e mail
address is [log in to unmask]

I am sorry to tell you, but CD is a life long thing.  Most
doctors are slow to prescribe Prednisone since it masks the problem and can
help thin the bones.  They will give injections of it, since this generally
isn't a problem. Could be you are getting an accidental ingestion.  I've
tripped on things like licking stamps and envelopes, chewing gum, canned foods
taco meat (sometimes barley is added).  Hope you feel better.

Consider that you may have intolerances in addition to gluten as it is
normally defined. I get the same symptoms from corn products as from
wheat, rye, etc. Actually, I think perhaps worse. In all, I get problems
from the usual gluten sources, plus corn, soy and milk (lactose). I did
not get better until I eliminated ALL of them completely.

I am currently taking Prednisone to treat Celiac.  I was diagnosed 9 months
ago with Celiac. Despite being on a gf diet (which was reviewed by my
Nutritionist and GI), my symptoms did not improve.  I started taking
Prednisone 4 months ago and it improved greatly, however in the last 3
weeks, my symptoms have returned.  I guess I'm in the same boat as you,
since I don't know how long the improvements will actually take.  I'll let
you know when I do.

I live in Hampshire IL.  I'm female, 46 yrs old, and I was treated with
predinsone before my CD diagnosis in Jan of 1997.  It did not stop the awful
diarrhea.  I notice even after 17 months of no intentional ingestion of wheat,
rye, barley, or oat in any form I continue to improve, slowly but surely.
There are so many side effects from that little pill.  I had cataract surgery,
and the opthomalogist assures me it is a side effect of prednisone.

m having the same problem - not feeling well while on a  GF diet - happened
about 3 1/2 years after being diagnosed and on a GF diet (sometimes I'd
accidentally ingest something and suffer for a short period).  My doctor has
been trying a couple of different drugs on me, and if these don't work, he
suggests prednisone.  I'm afraid I'm in for it too.  So - I would be
interested in hearing the responses to your questions, as I too would like to
know what lies ahead!  Wonderful predicament this celiac (I call it silly ass)
disease leaves us in!  Would appreciate any feedback you can give me (or will
watch for a summary!)  Many thanks.

Thank you again........................Joan, Lombard IL