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Thanks to all the people who replied to my posting.
My original posting (included below in it's entirety)
described my original symptoms as being needing to use
the bathroom 5-7 times a day with high urgency despite
being on an extremely restricted diet (chicken, steak,
and potatoes) and quantitative evidence that this diet
was gluten free (regrowth of villi, negative antibody
test results). I also seemed to notice an dramatic
increase in the frequency of bowel movements if I
deviated from this diet and had fruits or vegetables.
My doctor had been bringing me in every 3-4 weeks and
trying empirical experiments of various courses of
treatment to see if they had any results. The last
time I had been into the doctors before posting the
original message, he seemed to me to be running low on
good ideas. I took all the ideas people suggested and
reviewed them with him on a subsequent visit. His
favorite was pancreatic enzymes (Pangestyme to be
specific), because he had already talked about that
being one of the things he wanted to try. Amazingly
(after years of real difficulty), this seem to help
almost immediately. A week later and I'm back up to a
full diet of fruits and vegetable, homemade chips and
salsa, shrimp and pineapple over rice, special gluten
free brand rice crispie treats, etc... It's heaven!
There we're a lot of other suggestions that may be
helpful to others, so I'll list some of those. I'll
also include a very select group of original responses
(the size of postings allowed is very limited, so I
just tried to select the ones that seemed the most
different from the typical posting you've seen on this
list).
1. Pancreatic enzymes (There seemed to be a lot of
people who needed this)
2. Microscopic colitis (My doctor was aware of this
and had already checked)
3. Various cancers (lymphoma's, carcinoid tumors) (I
still worry about this one.)
4. Bacterial overgrowth
5. Thyroid problems
6. Recommendations for various probiotics (I haven't
done much of this other than acidophilis)
7. Salicylates sensitivity. (I thought this was
interesting, because it did seem to fit my symptoms as
far as fruits and vegetables, but the fruits and
vegetable related symptoms went away after I started
the pancreatic enzymes)
8. Recommendations to stop drinking gatorade (I did,
no effect)
9. Recommendations to stop using Colgate (I haven't
done that yet)
10. Food allergies. (My doctor says that the orthodox
medical establishment is pretty suspicious of many
"food allergy" claims.)
--------------------------
replying to your question the other day: in view of
your diet and the dx etc, you should ask the doc for
some pancreatic enzyme, it is called creon, and he may
have some samples. for goodness sake, it won't hurt
to try it. remember, people with celiac disease (not
celiac's, dear) often do not fall into the "normal" in
blood or other tests, so just go ahead and try this
route. Also, our immune systems are greatly
suppressed due to that old damage in the small bowel,
so even the white counts and other markers for
infection will not be what a doctor expects to find.
I say this because you may have some "slight' bowel
infection and need treatment. I have experienced all
these things and more, and learned that I just have to
be inventive and creative with my doctors in order to
get appropriate treatment. good luck cchigg
------------
Hi MIke,Make sure your doctor has tested you for
Claustridium difficile. It's an opportunistic
parasite (bad bacteria) that takes over the large
intestine, often immediately after anti-biotics have
been used. The main symptom is diarrhea and fatigue.
Most people who have C. diff have horrible horrible
diarrhea and end up in the hospital. In my case,
however, I only had diarrhea twice a day and walked
around with it for a year. The test is a stool test.
My other suggestion is that you stop eating potatoes
and eggs for 2 weeks, then reintroduce them one at a
time to figure out if you are sensitive to either of
them. Both of these foods trigger sensitivites in
many many people (I can't eat either of them myself).
I can imagine that you are sensitive to these two
foods, and then when you eat the fiber in fruits and
vegetables, the diarrhea happens. good luck!Laurie
---------------
I'm a big fan of tincture of opium for slowing
motility and returning to a normal schedule. I was
able to get off of it two weeks after going gluten
free, but other people I know have used it on and off
for years. If it was me, I'd do the tincture till the
bowel got calmed down, then slowly add fully cooked
(and I do mean, cooked till "babyfood"mushy) fruits
and veggies back into my diet, one at a time, no
citrus or tomatoes to start with(pears, bananas-you
know the reintroduction drill by now, I'm sure <G>)
then start backing off on the tincure once you're up
to a full diet.
If your doc has not prescribed this before, the folks
in the oncology dept usually know more about it than
the gastro dept (its used mostly for people on
chemo/radiation). Best wishes, Mike, hope this helps!
---------------
Rule out intolerance to Salicylates which are natural
food chemicals and found in some medications
http://www.allergyclinic.co.nz/guides/30.html
http://allergies.about.com/cs/salicylate/
try low salicylates veg and fruit and check with your
doctor about any medication
---------------
Hi Mike, I had a similar problem that began about 3
years after my diagnosis. I go to Dr. Green at
Columbia and we did try pancreatic enzymes after
exhausting other things.I took Pancrease (3 with each
meal) and they did help. After about 4 years I
discontinued them and things were much better. Have
your stools been tested for parasites? This is not a
celiac thing but can certainly cause similar symptoms.
A celiac friend was tested various times for
parasites relating to continuing diarrhea, nausea and
general intestinal problems including weight loss.
Nothing was ever seen in the testing, the reports
always came back negative. Twice she was treated with
a drug for possible Giardia. The symptoms continued
for years.Recently she took an antibiotic for an
infected tooth and her diarrhea now seems to be
"cured". She has remained symptom free for the past 8
months. Her MD is puzzled. You do not mention eating
grains, however, some celiacs do not seem to be able
to tolerate even the GF grains. Some follow the SCD
(specific Carbohydrate Diet) which does not include
grains or starchy carbs.....it is mainly meat, fish,
poultry, specially fermented yogurt and two things
that you find cause you problems--vegetables and
fruit. Have you tried just adding one vegetable such
as well-cooked carrots for a week and keeping a food
diary? If this increases symptoms, stop carrots and
try just well-cooked string beans or zucchini? This
way you might find one or two vegetables you might
tolerate. Then perhaps just add applesauce or a
banana and see if you can tolerate that......If you
eat too many things all together and go back and
forth, it is very difficult to find what you can and
cannot eat. Initially....all vegetables should be
well cooked and all fruits peeled and cooked as well.
It is time consuming, but important to only add one
thing at a time to establish tolerance.You may find
some vegetables/fruits you can successfully eat. Have
you been tested for microscopic colitis? I guess, even
as celiacs, we are all different in what we can
tolerate. One diet does not fit all of us.Be thankful
you don't have refractory sprue....that in itself is
encouraging. Good luck in finding an answer and a
more varied diet.Carol
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