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Hi Everybody...

Thanks to everyone who responded.  I didn't get any definitive answers, but
the responses I got really drove home the point that going after a formal
diagnosis at this point may be fruitless.  I think it is clear that the GI
"specialist" that I saw is not knowledgeable in CD or other subtle digestive
disorders, and it isn't as if I have many options here in Alaska, so a second opinion
will be costly.  I do not need a formal diagnosis for any reason other than
peace of mind, so I'm going to stop pursuing that and start doing what I can to
improve, at least for now.

Both I and the GI doc knew that I'd been mostly off gluten for 6 months.  His
reasoning for saying that I don't have CD despite this is that I still have
moderate to severe symptoms but no 'sign' of any damage in the gut.  He didn't
check my stomach acid production (I would have thought that would be an
obvious thing to check), and he hasn't suggested the possibility of bacterial
overgrowth (which, based on some symptoms I've had, I'm sure I'm dealing with).  I
can't remember how many biopsies he took, but it wasn't many (I thought he said
1, my husband thought he said 3). He did do extensive blood work, all of
which was normal (comprehensive metabolic panel, IgA production, etc.).  He's not
open to my suggestions or ideas, so I'm not going to waste my time with him
anymore.

When I first went off wheat I was doing an anti-candida diet.  I got the
candida under control (though not eliminated), and also started taking supplements
to help heal my gut, and digest my food (Betaine HCl and digestive enzymes).
My initial symptoms suggested gastritis, so I took fish oil for the
inflammation and avoided protease (the enzyme that digests protein.  It is
contraindicated in gastritis).  After a few months with these supplements I was able to
stop the HCl and only occassionally take the digestive enzymes (I continued with
the probiotics, B vitamins, zinc and various herbs and other supplements that
heal the gut).  My fatigue was under control, and I had stamina and strength
despite being underweight (for instance I'm at 100 lbs and I was doing fairly
vigerous hikes with my 30 lb son on my back).  Previously a strenuous hike,
even without a pack on my back, would lay me low for the rest of the day.  I
stopped these supplements back in April, and by May I was back to my old self -
that is, excessive fatigue, more stomach pain again, and just an overall blah
feeling.  Also, I had a cold that hung on forever, and I know that really
dragged me down.

I think that what I was seeking was validation that something was wrong with
me.  I should have just stuck to what was working and not focussed so hard on
a diagnosis, but I did want to know what my gut looked like.  Unfortunately,
it really didn't answer any questions.  Do I have CD?  Yes, no, maybe.  Going
gluten-free certainly didn't make my problems go away.  What made my problems
go away was a strict routine of supplements.  I said I was 97% gluten free
because I might have gotten a small amount of hidden gluten, and because on
occassion I did eat a wheat-free but not gluten-free hot cereal (moreso in the early
stages than the later).  If I reacted to these the reaction was subtle and
delayed.  Other foods definitely seemed to give more severe and obvious
symptoms.

My course of action is going to be this: go back to what was working (the
supplements) and eat a very basic diet.  My husband is interested in doing an
elimination diet too, and my son has food allergies that have been diagnosed
(food allergy testing was very informative for him), so as a household we are
going to change the way we eat this summer.  We will do a food diary, as so many
of you have suggested, and we will take the time to find out what bothers us
and what doesn't.  One thing I WON'T do is take this "diagnosis" of not having
CD and just start right back up on gluten foods.  Frankly, I haven't missed too
many gluten-containing things... eating gluten-free just makes it more
complicated to eat out (which we don't do very often as restaurants here tend to be
quite expensive anyway, at least the ones that prepare foods that I can't cook
better here at home).  I occassionally get cravings for gluten stuff, but I
know they make me feel bad (or at least I have it in my mind that they do) and
the craving goes away pretty quick.

I will definitely revisit CD if by doing an elimination diet and continuing
the supplements do not ultimately resolve my symptoms.  I'm certainly not going
to barge ahead as if nothing is wrong.  I'm planning to continue subscribing
to this list because I have found it to be extraordinarily helpful in making
me more aware of gluten sources, complications, and alternatives.  It certainly
helps with ideas for my wheat-allergic son!

Thanks again,
Andi In Alaska

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