Undiagnosed

[Scopey8]

Hi everyone

I haven't been diagnosed but I first got sick last December with bloody diarrhea and cramps going to the toilet over 20 times a day. I didn't go hospital but went to the doctors after about 7 days. He took a stool sample and it revealed I had a calprotecin of greater than 6000. I had symptoms for about 10 days. I still get and had stomach cramps but on a scale of 1-10 I would say its a 3. I had a colonoscopy which showed mild inflammation and erythema at the mouth of the terminal ileum and ileocaecal valve. It stated "unable to pass through ileum" biopsy taken of ic valve and showed no evidence of crohns. Had mri of small bowel which was normal. The consultant said it was likely an infection. I've had a few calprotecin tests done at the doctors and its come back normal but I decided to see a nutrionist who did another calprotecin test and it came back at 220. I was then referred bk to another consultant who said he thinks 95% its not crohns and it could be a number of things. He said to be sure I should have a calprotecin test done every 6months for a yr. He said we don't want to miss anything serious and not be able to successfully treat it. The last few weeks I've been getting blood in my stools on 7 occasion's for the past month but last week wen I got it I did a calprotecin test the next day which came bk normal. I'm concerned that something could of been Missed on the colonoscopy as how did they get a biopsy if they couldnt reach the ileum? I've never had bleeding in my stools before. Does anyone know how accurate the biopsy for crohns is? And if I don't have crohns then why has my calprotecin been high twice and why am I getting a lot of blood in my stools? I've just had my calprotecin test done and get my results tomorrow. BTW not sure if this makes a difference but my anti-gliadin IGA was high, elastase-1 was quite low and b-glucuronidase was extremely high. Thanks so much

 

[ronroush7]

I would guess with the high calprotectin twice and with blood in the stool that you have some form of IBD. Keep seeking for answers until you are told what is going on.

 

[Jabee]

Many GIs won’t diagnose crohn’s unless the biopsies show granulomas. The problem is that a minority of crohn’s patients have granulomas, so diagnosing is based on symptoms, tests, and biopsies. I think you definitely need to go back to your GI and get to the bottom of the blood in your stools. A positive anti-gliadin test can suggest celiac disease; have you discussed this with your doctors? Celiac is usually confirmed by upper endoscopy; on biopsy the normal villi in the walls of the small intestine are severely blunted. I hope you can get some answers soon.

 

[Scopey8]

Thanks ronroush, the consultant said it could be a number of things like infection. He said symptoms usually last longer than 10 days and wen I got blood In my stools last week I did a calprotecin test and it came bk normal. Its very strange. I was told it's probably a tear or piles but I have no pain. If I get loads of blood again I'll go back to the Dr because surely piles or a tear don't last for a month on and off and I've never had blood before since I got sick last yr

 

[Scopey8]

Many GIs won’t diagnose crohn’s unless the biopsies show granulomas. The problem is that a minority of crohn’s patients have granulomas, so diagnosing is based on symptoms, tests, and biopsies. I think you definitely need to go back to your GI and get to the bottom of the blood in your stools. A positive anti-gliadin test can suggest celiac disease; have you discussed this with your doctors? Celiac is usually confirmed by upper endoscopy; on biopsy the normal villi in the walls of the small intestine are severely blunted. I hope you can get some answers soon.

Hi jabee thanks for your reply. The consultant based it on biopsy and symptoms but only because my symptoms don't last long like wen I got very sick last year. I got better in "I think 10-14 days. He said Crohn's usually lasts weeks or months. He akso said i havent lost any weight since last year. The doctor " not consultant " said celiac would be higher up and didn't think it was that. I told the consultant about blood in stools but she didn't say anything i think because when I had blood in my stools last week I did a calprotecin test next day and it was normal so it didn't suggest inflammation. If I get the blood again whether it is piles or a tear i will go back to my doctors and the meantime I'll wait for my calprotecin results. Thanks for your advice and I might ask my consultant about celiac disease. I don't eat gluten anyway because I thought that's wat it was.