Undiagnosed - after advice

[skittle]

Hi everyone. I'm a 32 year old female currently awaiting diagnosis with SOMETHING!
I have coeliacs disease and have been strictly gluten free since diagnosis 7 years ago.
For the last year or so I habe started having bowel issues - alternating between diarrhea and constipation, feeling like I've had a gluten reaction when I know I haven't consumed any gluten etc. I also have drenching night sweats but put that down to my antidepressants (I've been on those for 3 years and night sweats started around a year ago).
For the past 5-6 months I've been having severe abdominal pain. It can not be pinpointed to a particular spot, it radiates all around and nothing hurts when pushed. But it feels like a burning, stabbing, twisting pain and the last couple times I've had it, it's made me throw up.
It passes in a few hours which is why I haven't gone to the hospital.

I am extremely tired. I could sleep all day every day if I didn't have 3 children to look after!

I got my Dr to test my coeliacs antibodies which came back fine.
She has started doing a series of tests which include the following.

Bloods - only thing out of the ordinary was my iron which was 9 and now 3 months later with supplements is 26.
Stool samples - showed no bleeding of the bowel but calprotectin came back at 426.
Ultrasound - everything normal except one ovary was polycystic.

Am on the waiting list for a colonoscopy which will take months before I'm seen.

I guess I'm wanting to know basically if this sounds like what any of you all have.

 

[ronroush7]

Welcome. I am sorry for all you re going through. I have read a lot of people on here who have night sweats. Could you ask to get in sooner if there are any cancellations as far as the colonoscopy is concerned? It is hard to say but you may or may not have ibd.

 

[MamiDoll]

Hello there! The symptoms you listed could be from any number of ailments. It's terrible you must wait so long for a colonoscopy. You certainly need one. IBD causes such a range of signs and symptoms the only way to tell what's really going on is through some sort of imaging (MRI/MRE/CT Scan). Have you had additional lab work done like: ESR, C reactive protein. A high white blood cell count? Do you have the abdominal pain after eating or just randomly? Do you have any strange symptoms elsewhere as IBD manifests in lots of ways above and beyond the GI tract?! I hope you get some answers soon, hang in there...I remember this period of time when I was undiagnosed. It is challenging.

 

[skittle]

Welcome. I am sorry for all you re going through. I have read a lot of people on here who have night sweats. Could you ask to get in sooner if there are any cancellations as far as the colonoscopy is concerned? It is hard to say but you may or may not have ibd.

Hi, thanks for the reply. I've been asking and asking but no, the woman said I am only priority 2 which means I must be seen within 4 months.

 

[skittle]

Hello there! The symptoms you listed could be from any number of ailments. It's terrible you must wait so long for a colonoscopy. You certainly need one. IBD causes such a range of signs and symptoms the only way to tell what's really going on is through some sort of imaging (MRI/MRE/CT Scan). Have you had additional lab work done like: ESR, C reactive protein. A high white blood cell count? Do you have the abdominal pain after eating or just randomly? Do you have any strange symptoms elsewhere as IBD manifests in lots of ways above and beyond the GI tract?! I hope you get some answers soon, hang in there...I remember this period of time when I was undiagnosed. It is challenging.

hi, thanks for your reply. Yup all the above lab work was normal. No it doesn't correlate to eating but I have little to no appetite and have lost weight without really trying.
I get other things like achy legs and joints but always put it down to my coeliacs. I can't think of other things off the top of my head but basically am always feeling terrible!