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Fecal Calprotectin, Colonoscopy/Endoscopy, so many tests later doctor is getting stumped on diagnosis. Any personal advice?

Sup everyone,

25 year old college kid... I could write for days but i'll try give a quick review and see if you guys can help put it together.

If I wrote my whole review it would be pages but here's where I'm currently at:

SYMPTOMS: (sept 2013: 158lbs April 2014: 138lbs)
slow but gradual weight loss
Burning under my right rib, and especially just below my belly button 30mins-hour after eating anything. (sometimes dull pain, sometimes like acid!)
Stool looks very strange (worst symptom) I only go every day or two, not rushed, but color is light green/tan/maybe yellow. Stool is usually solid regular length pieces but very wet.
Sometimes has terrible smell, sometimes no smell at all.
Very uncommon but i'll sometimes see oil droplets on the water surface, or sometimes at the beginning of the stool there is white mucous (not much about size of dime/nickel)
Very gassy
*newest symptom: legs/hands (especialy feet while driving) while sometimes go numb, or tingle for no reason for a short amount of time.

Tests complete:
Comprehensive Metabolic Panel
Complete Blood Panel
tTga Iga? celiac blood test
sedimentation rate
C reactive protein rate
5-hiaa urine test
Complete Thyroid panel
Endoscopy/Colonoscopy
Fecal Calprotectin test (all come back normal except results below)

Currently waiting results on: HLA typing test for celiac, folic acid test, B12 test, comprehensive celiac test.

Doctor is still pushing for celiac or non celiac gluten intolerance?, only problems he could find is my vitamin D is low, platelet count is low (but red/white cells perfect), and my duodenum was flat in appearance yet biopsy comes back as no histopathical abnormalities found, also chemical gastrophy in the upper part of my stomach. And my calprotectin level came back as 153, which the doctor says could be partially from the chronic proton pump inhibitor use or slightly inflamed stomach.


I've only been gluten/milk free since January but other than getting my energy and sleep back my occassional burning and funky wet weird colored stools remain.

My question is if I'm just lucky and caught symptoms before severe body damage? am I just doomed with the idea of leaky gut, or that my body is allergic to something I don't know? or is this the sneakiest crohn's you've heard of this week? Or what other tests should I push for?

Thank you for your time!
 

nogutsnoglory

Moderator
Sorry you are struggling with a mystery illness. Is your doctor a gastroenterologist? They ran good tests but it would be critical to see a specialist who may also want a colonoscopy or CT scan imaging to help them better understand what might be going on.

When I first had problems, I had all your tests and they came back normal. Only after more complaining they did a colonoscopy and said yep it's crohn's.
 
Well hello NoGuts! thanks for replying

Yea, I'm currently seeing the Gastro Specialist at one of the university hospitals.

We did both a colonoscopy and endoscopy, my entire colon and a full foot into my terminal ileum/ small intestine looked good too.......

its exhausting, contemplating the pill capsule if I can even afford it, or are there any x rays / photo rays that could maybe pin point anything?

Months of work and he tells me its a low level of inflammation with low platelets and low vitamin d, could be many things!!

Your profile photo is fricken awesome, wish i could go to work looking like that!
 
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