Help :(

Hi all,

I'm really struggling with what is wrong with me.

In about 2009 i started feeling unwell, lack of energy and looser bowel habits. I ignored this until it became problematic in 2010/11. They suspected Crohn's due to my family history. So they checked for that.
Blood come back ok, first colonoscopy negative. second, came back with minor inflammation in ileum.
I was put on pentasa but i kept getting worse and worse. Then Prednisolone and then in 2013 azathiprine for 7 months which i've just stopped. Nothing budged my symptoms

Here is the symptoms as of now -

Very very low energy - (bed ridden for 8 weeks)
Weakness
Dizzy
Brain fog
Ringing in ears
loose smelly pale frothy bowel habits (once/twice a day)
belching
Lost more than 10% of my body weight in 3 months. 183cm 65kg (was 80kg in 2010)
Muscle wasting
Pale skin
Struggling mentally as i feel i'm dying
(no pain anywhere)

I have been to see a endocrinologist who checked hormone levels and all are ok except low testosterone (starting replacement next week)
MRI ok
Not diabetes
Blood ok, no anaemia (low though)
Kidney / liver function ok
Had a test for celiac but was gluten free for 3months before test (had about 2 weeks light gluten before tests) Gastro said it definitely wasn't celiac.
ER twice both sent me away saying nothing wrong
B12 ok
Vit D ok
Calcium/Phosporus Ok

I really can't think whats wrong with me. Can't do this much longer.

Lost my GF, lost my home and lost my job. Seeing gastro in two weeks but he keeps saying my symptoms aren't related to my gut..
https://www.healingwell.com/community/emoticons/cry.gif

Hi there, I did try for about 3months and my symptoms didn't clear up completely, I can't really remember how i felt exactly from going gluten free and after having the celiac test my GI said to carry on eating it. So i did. I didn't know it can cause symptoms for a non celiac.

I feel for you, dude, but in all honesty I'm a bit clueless on this one :-/ Obvious question alert, but are you eating less than you used to? That could account for the gradual weight loss and perhaps several other symptoms, too, including low energy, weakness and muscle wasting.

I really, really doubt gluten is the source of your problems after what you said about trying gluten-free for 3 months and testing negative for coeliac disease.

After a colonoscopy and MRI, there is not much more testing for Crohn's which can be done, tbh. There is the pill cam, or capsule endoscopy, which may find inflammation in the small bowel that didn't show up in an MRI - ask your gastro about that.

If you were on a standard tapering course of Pred (8 weeks) and you've been off it a while, I don't think Pred will be affecting you by now. The azathioprine, however, will still be in your system for a few months. Thing is, while you were on azathioprine, you should have been having regular blood tests to monitor your liver and blood, and those should have picked up on any issues with metabolising azathioprine, so I kinda doubt it's that either :-/

The only other idea I have is that it's some kind of lingering viral infection you have.

Probably a diet person will be along shortly to recommend the SCD (Specific Carbohydrate Diet). Low-FODMAP works on a similar basis and your GI might have heard of low-FODMAP if you are based in the UK or Australia. If you do decide to go on a diet like these, take extra care to get enough calories, 'cos you are already underweight for your height and gender.

Good luck; sorry I couldn't help more :-/

I'm so sorry for u I know exactly what your going through but I have constant pain so bad and can't eat for over 2 weeks pain so bad can't talk stand eat walk shower nothing. I have had crohns for 33 yrs since 7-8 my bday Aug 8 day it got really bad. Also pain has gotten so bad I have thought I would rather be dead can't take pain anymore was in ed Fri I have Med port poked 5 times and 13 attempts on ivs I was in tears. Wbc 16000 having bowel constricting bad closing off no obstruction found go figure I haven't eaten in 2 weeks. Dr sent me home w 8 percs that I had to beg for. For a long time I didn't have pain or only occasional now over 2 years its constant. Funny I'm also a nurse worked at Cleveland clinic over 5 years got fired from being in hospital and much harrassment from manager and know no one w crohns and if they have it its no where as bad as mine. That scares me. I do know how u feel lost my job cars house and husband that cares nothing about me.