Any idea what is going on?

[Sunita77]

Any idea what might be going on? I'm not diagnosed but I have had tests done (2 colonoscopies which showed no inflammation but 1 colonoscopy showed ulcers in the terminal ileum but the biopsies were normal). A CT scan showed chronic active inflammation in my terminal ileum and caecum. I then had an abnormal capsule endoscopy which showed the ulcers again. My previous calprotectin levels have been in the 200's and 400's.

After the results of my capsule endoscopy my consultant wanted to do another repeat stool sample test. I received a letter stating that the calprotectin levels in my stool sample were negative for inflammation. I'm confused and I feel as if I've gone a step back instead of going forward for answers. I've now received a follow up appointment in October.

I have read that ppi tablets can elevate calprotectin levels. When I had my stool samples tested I was taking lansprazole as I had my gallbladder removed 2 years and it helped with bile reflux. I recently came off it again as I know being on it long term isn't recommended due to the side effects. My consultant hasn't tested for bile acid malabsorption yet as he has gone down the IBD route.

Does this sound similar to anyone? Thank you for reading.

[012703060610]

hi there. I’m three years into trying to find a GI diagnosis. Other meds play a huge role in mostly messing up our system. My GI doc and rheumatologist agree to disagree. My rheumatologist believes I have some form of IBD and my GI doc says IBS with gastroparesis. Post 5 CT scans, MRE, three colonoscopies, two endoscopies and a pill cam. My autoimmune drugs help my bowels so there is something certainly going on. October seems far off. Interim steps? Have you had a full rheumatoid work up? Just a massive blood test? My bloodwork was clean with the exception of something called ANA titer. The ratio is usually 80:1 for normal results. I came in at 640:1 and immediately got sent off an academic center. I had lost 40 pounds so everyone was focused on GI. The weight loss was due to the onset of an autoimmune disorder instead. I’m still working on bowel issues but at least am getting treated correctly for the rest! I know it’s frustrating and doctors don’t like to give up too much when they are confused too. I met with my GI doc last week with a simple….what’s next question. His response was to consult with the entire practice. When the experts don’t seem to know, it is beyond frustrating! Hang in there and we are here for support!