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Thank you everyone for your responses to my enquiry about tropical sprue. I
got many different inputs and useful information and I not only wish to
summarize your responses here but my reaction to your letters as well.

Some thought that tropical sprue might be a possibility, others thought not,
since I had a good reaction to eating gluten free. Some didn't believe there
was even such a thing called Tropical Sprue, it is all Celiac. Others told
of there experiences getting treated by Tropical Sprue. Some thought I
should have a diagnosis done, others advised me against doing a "gluten
challenge" in order to get diagnosed.

In general, there is a lot of wisdom in a lot of everything that was said
even though it may have been contradicting. Here are some quotes with some
of my responses in brackets:

-- Just to let you know.  I had tropical and have Celiac.  If you have
tropical sprue, you can be rid of it after having the correct treatment
for one year. ( I wouldn't rule this possibility out for me. I wouldn't
be surprised to see that that the two are connected.) -- It was
suggested to me that I may have picked up tropical sprue when in Taiwan
and/or south america ... I had a wickedly hard time finding any kind of
information on *tropical sprue* ... my doctor said that he'd have to do
a much longer scope of the intestine to get where the parasite lives and
that there was a pretty high risk of perferating the intestine, etc.
... so I just stayed GF and forgot about it ... (seems like the same
could be with me, although I definetly don't like the idea of having a
parasite for the rest of my life.) -- As far as I know, tropical sprue,
celiac sprue, celiac disease and gluten intolerance are all names for
the same thing.  It is not an infectious disease that you contract,
rather you have a genetic pre-disposition to it and stress (such as
pregnancy) can cause your body to no longer handle gluten as it was and
symptoms start.

(I find this response very interesting. Mostly because in a way its
true!  However I do admit that genetic predisposition can always leave
the "doors wider open" for bacteria. I haven't ruled that out. For me,
Celiac is a much more undiscovered illness then most believe and it
seems Celiac can be very well be brought upon by an "attack" on the
system, bacterial, stress, or diet.) -- I, also, became gluten-free, as
much as I knew how to be, before I ever saw a doctor.  Through this
medium, I found one of the best celiac doctors in the US.  She strongly
advised me NOT to do a gluten challenge so I could be biopsied via
endoscopy.  She told me that she and her colleagues have found that
doing so may cause me to have another autoimmune disease.  ( good
advice) -- I try to live gluten free because I feel difficulties with my
stomach every time after eating even a crumb of bread on the butter. But
somehow I feel well after eating chinese or japanese with all its soy
sauce (which contains wheat). I am a little confused. But this may be
due to the relatively low sensitivity of my intestines - its rather
permanently disturbed. At the end I not really convinced that it is the
gluten alone ..... ( I am like this as well, Usually I react to any
starches in large amounts, but gluten in particular) -- Pregnancy seems
to put a bigger strain on the system and causes bad anaemia.  It
happened to me...I would say in your case, until you are certain, don't
eat any gluten again EVER! Good luck with it all.  Also you may have a
tendency towards diabetes (it can be associated with coeliacs) which
could be why a reduction in sugar and carbohydrates helped you. (yes, I
also read that Celiac often shows up during pregnancy. I also agree,
infection or not, gluten is not at healthy for me.) -- They originally
diagnosed me with tropical sprue after doing an endoscopy, due to what
they saw on the endscopy and because tropical sprue is found in Haiti.
I  was on antiboitics for almost one full year and would get better
during the course of the antibiotics and then get very sick as soon as I
stopped taking them.  I  came back to the states and they did the anti-
endomysial anitibodies test and another endoscopy which led them to
diagnose me with celiac.  I've been doing much better on the gluten free
diet. ( I find it interesting that you felt better during the course of
the antibiotics even though you were not gluten free. I still can't give
it up that there might be a relation.) -- Following Occams Razor (the
simplest solution is usual the true one), celiac sounds more likely than
Tropical Sprue. First, I doubt that Tropical Sprue would get better on a
gluten-free diet, or that it would return when you go off the diet.
Second, celiac is just a lot more common, esp. if autoimmune disorders
run in the family. (This makes a lot of sense...)

There are a number of tropical parasites and other diseases though, that
can be more or less latent for a long time, and maybe it would be worth
while to get it checked out. Again, I don't think any of them respond to
gluten one way or another, and if you are doing ok, you probably don't
have any of them (at least not too bad). Getting those diagnosed in this
country is probably even worse than getting diagnosed for Celiac though:
few doctors have any experience. ( Luckily, my mother who is a Holistic
doctor in LA, has had experience with parasites, so we are looking into
it.) -- Nope i've always lived in the usa and all my pregnancies were
just as you Described and because of late diagnosis i live on tpn and
permanent damage Which showed on a biospy 15 yrs on a strict gf diet
with no possible gluten CONTAMINATION...

-The gluten free diet would not help if it weren't celiac so don't go
into DENIAL NOW (I actually had a funny reaction to this response. First
I didn't think much of it, then I was actually very grateful. You are
right, there is no comparison to the damage done by eating gluten,
physically and emotionally.) -- It seems that there may be NO tropical
sprue-always CD.  When the European visited the tropics they of course
did not have much flour.  So when they returned the symptoms(of those
who were predisposed to CD) and began ingesting flour etc the symptoms
began. You have Cd.  Be thankful it is all.  No diabetes,rheumatoid
arthritis,  osteoporosi,lupus-just Cd. Don't let them gluten challenge
you unless you want to be ill. ( I also want to say thank you for this
response. I actually feel proud to be able to say I'm a Celiac.  It's
funny but in many ways I feel much better off.)

--Doesn?t mater haw hard you deny it and doesn?t matter what doctors
say, your time for eating gluten again is over. Put it this way: You are
lucky to know what bothers you, but millions will continue to suffer
without ever find out the reason. You don't need doctor's blessing to be
on gluten free diet.  Welcome to gluten free world! ( thanks.) -- Have
you been tested for parasites - which can give you symptoms similar to
celiac sprue.  My son was in China about 6 months ago, after which he
started experiencing such symptoms.   He  eventually went to my
gastroenterologist to be tested (thinking he must have his mother's
dreaded disease!), and the blood test came back showing that he had a
parasite. (Do parasites also react to a gluten free diet?... it may
sound odd.) -- My sister almost died when she was pregnant and was
diagnosed soon after.  One thing I would suggest is that is that you
have a bone scan.  She had severe osteoporosis at age 30 from cd. (
luckily, my gynocologists recommended me to take Calcium  during my
pregnancy, which I did in huge quantities. So much that my nails grew
overnight and my daughters molars came out all at once. I was lucky,
thank goodness)


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All in all, I benefited quite well from your letters. I feel now more
comfortable in calling myself a Celiac and ready to live gluten free for the
rest of my life. If I get a chance, I'll ask to be diagnosed for the other
possibilities, but at least now I know what to ask for.

Thanks a lot,
Nurmala Knapheide
Cambridge, England