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
sheet 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