Plea for help with diagnosis

From: Brad Edwards (bradedwards_at_emailaccount.com)
Date: 06/07/04 

Date: 7 Jun 2004 15:44:18 -0700

My apologies if this is too long. I'm posting my story in the hopes
that someone will have a clue as to what is wrong with me. I'm not
sure which group to post to, so if you have an idea as to a better
place for it then please let me know.

I am a male in my early 20s and have been underweight my entire life.
I've never had much of an appetite or really enjoyed eating. My first
meal of the day was usually after 3pm. Four years ago I became
severely dehydrated and malnourished, due to my poor eating combined
with a lot of stress. During this episode I was extremely weak, and
spent maybe a month in bed trying to eat/drink enough to rebuild my
strength. Ever since this event I've been trapped in an endless cycle
of trying to maintain my health.

For some time after the dehydration episode I would wakeup in the
morning with an urgent need to defecate, and had explosive bowel
movements of strange color/variety. I also felt compelled to eat as
much a I could every 2-3 hours beginning immediately after I awoke. If
I didn't eat on schedule, my mind would start to feel strange, kind of
cloudy like I was spacing out, and then once the hunger pains came I'd
feel like there was an emergency and I'd exhibit panic symptoms. Some
minutes after filling my stomach with some food I'd start to feel calm
again.

Since I had such tremendous anxiety all the time, I assumed I just had
an anxiety disorder, and that was why my digestive system was behaving
strangely. But as time went on, I began to learn how to relax a bit
and keep the anxiety from escalating into panic attacks. I also
noticed that there were periods of time when for the most part I felt
fine. As long as I ate on schedule, then I'd feel good enough for up
to 3 months. But this remission never lasted, eventually I'd be hit
again with my body behaving erratically, with mind fog, memory
problems, difficulty finding words to speak right, darkness when I
stretched my arms up in the air like I was going to pass out, stomach
pains, weakness and fatigue, etc.

I visited a GP and he did some blood tests for general things as well
as thyroid hormone levels. Everything was fine except I had an
elevated ALT liver enzyme. I did some research on my own and the hype
on the Internet led me to Celiac Disease. Unfortunately the doctor
said that he couldn't test me for it, so I just went on the
Gluten-Free diet instead. I took the diet to an extreme level, using a
new kitchen with new pans/utensils, and only ate whole foods such as
steak, fruits, vegetables, and nuts. I've been on this diet for over a
year now, and despite feeling somewhat better, which could just be a
placebo effect, the only other noticeable difference is a change in
the way my feces looks. I have not gained weight, and I still get sick
every so often. Though I do seem to have longer periods of remission
with this diet.

Since I haven't had a miracle recovery after a year of being on a GF
diet, I figured I should explore alternatives. I visited a GI doctor,
who ordered a bunch of blood/stool tests. He said the results were
that I was dehydrated. The *** shows the following with an H next to
it, which I assume means high: C02, BUN, CREATININE, ALT/SGPT, VITAMIN
B12. The doctor said the next step was to do some tests like a
colonoscopy/gastroscopy in order to rule out Celiac Disease and
Crohn's. But I'm already on the GF diet, and I read that there's no
treatment for Crohn's, so I decided I'd rather not undergo the
invasive testing procedures.

All of the vague symptoms I experience while "sick" seem to be related
to my gastrointestinal tract. During the days when I'm feeling pretty
good, I can wakeup in the morning and calmly eat some breakfast. But
on the days when I'm not doing so well I wakeup and immediately have
to run to the toilet, and as I go I'm grabbing some juice or food to
put in my stomach since it feels uneasy. Everyday, no matter how I
feel, my abdomen distends after I eat in the morning and stays that
way all day. On the bad days I have to defecate multiple times,
probably 2-6 or more.

The two symptoms I hate the most are when my mind becomes spacey, and
when I become fatigued. There are some days when I feel like I don't
have the energy to breath. I have to use a chair while washing the
dishes I need to eat on, and then I spend the whole day sitting on a
chair listening to relaxing music as I kind of just stare into
nothing, not moving a single muscle, attempting not to use too much
energy so that I have enough to cook my next meal. Those periods
aren't fun, but I've always made it out of them and then have a
stretch where I have enough energy to do what I need to do.

My guess is that it is something involving the immune system, since
when I don't feel well it sometimes feels like when you have a cold,
but with none of the cold-like symptoms. It's just the overall feel,
like your entire body is fighting something.

At this point the doctors I've seen don't have much to say. If someone
were to offer me a clever idea as to what might be wrong, it might
lead to this mystery being solved, and I would be forever grateful.
I'll gladly answer any questions that you might have.

Thank you

Brad Edwards