Normal biopsies but fecal calprotectin over 600!

[Sooz]

I have been suffering with stomach issues for 20yrs now but it has been far worse the last 4-5yrs with new symptoms in my stomach and upper GI.
I've had colonoscopies, endoscopies, small bowel MRI, a pill cam, all so far have come back negative apart from showing inflammation in my stomach (supposedly gastritis).

My gastro Dr tried me on a course of steroids a few years ago and they worked wonders, my bowel was functioning normally, I was able to eat, felt really good, sadly pretty much after a week of finishing the course all the symptoms returned. The bowel stuff I can mostly cope with but the upper GI is unbearable, I literally cant eat. I feel permanently full all the time, get an acidy taste in my mouth and whenever I eat I am in agony for about 5hrs afterwards. I eat smaller portions than my 3yr old niece yet feel like I've eaten a 10 course meal. Last year it got so bad my weight plummeted to 6 and a half stone. At this point they did a fecal Calprotectin test and the result came back at 410. My gastro Dr said he's pretty sure it's IBD of some type but doesnt know what. He then started me on azathioprine but I lasted 2 weeks on it before i had to stop because I reacted badly on it, so he put me on tioguanine instead. I have now been on tioguanine nearly a year but a month ago I had another really nasty flare, loose stools, chronic pain that left me unable to even stand up. I had a small bowel MRI at the time which came back normal but I also did a fecal calprotectin test which came back showing levels over 600. My gastro doc did a colonoscopy 2 weeks ago, took loads of biopsies and that has come back normal too. I've since had steroids and my bowel has totally calmed down but the upper GI problems remain. I've lost 3lb in a week from not being able to eat and am waiting to hear what tests they are going to suggest next. In the meantime I've been pretty much left to starve myself.

I just wondered if anyone else had similar symptoms? I know I have delayed gastric emptying because when I had my pill cam test done 3yrs ago they said the pill sat in my stomach for 4hrs before moving and recently when I had my small bowel MRI they took me off the scanner and made me walk around for 45 minutes because all the contrast was still sitting in my stomach!

There is obviously inflammation somewhere and something is causing the delayed gastric emptying but I feel like I'm getting nowhere fast. Just so sick of having no life and spending everyday feeling full, sick and in pain.

I think they are considering doing another pill cam but I'm just wondering whether that will show anything after everything else keeps coming back normal?!

 

[nogutsnoglory]

Have you discussed the possibility of microscopic colitis with them? It would only show if they happened to biopsy one of those microscopic patches.

 

[Sooz]

Yes, they said all my biopsies showed no inflammation apart from the ones taken from my stomach but he said they didn't signify Crohn's just inflammation.

 

[DEmberton]

They wouldn't have been able to do biopsies of the small bowel, except at the very ends.

It does sound similar to what I was going through for 18 months or so, though perhaps I didn't have it as bad. Ultimately I found out I had a small bowel stricture identified from a CT scan.

I found eating a bland diet and just drinking water helped quite a bit, though I was still having a battle every day to force myself to eat. I did find that eating would make me feel better, for an hour or so anyway, then all the pain and gurgling would start.

I hope you find some answers.

 

[Sooz]

That's exactly what mine is like!!!

They've done a small bowel MRI and said there was no narrowing or strictures. Although I am slightly concerned that the nurse said it wasn't complete as some of the contrast was still in my stomach. I just wonder if the pill cam might show more?!

 

[DEmberton]

Dunno. Not really sure what the difference between a CT Scan and an MRI is, but the doctor said the problem was very clear after a largely inconclusive gastroscopy and colonoscopy. I had to drink a lot of horrible liquid, and they said they'd have to time it right otherwise it wouldn't work.

I would generally get worse through the day, and when it first started getting that bad was not eating at all in the evenings. Which is when I started losing lots of weight, and got really tired with it, so soon realised I had to force myself. Tuna and rice I found I could manage.

Best of all in the evenings I could sit and watch my abdomen repeatedly swell up for a few seconds, and then go back down again with a big gurgle. Hours of fun.

 

[Mehita]

Have you been tested for Celiac? A high calprotectin can sometimes indicate Celiac disease.

 

[Sooz]

Yes celiac came back negative. Plus I don't seem to get increased symptoms from gluten products. It hurts whatever I eat!

 

[my little penguin]

Have they looked at bechet's or EGIds???
Bechets can mimic crohns and takes years to dx since the symptoms can spread out.

EGIDs
http://www.apfed.org/drupal/drupal/symptoms_of_EGIDs

Delayed food allergies ( allergic colitis ) can cause raised fecal cal

 

[UnXmas]

Have you had a gastric emptying study? That would give objective evidence of gastroparesis/delayed stomach emptying. To me it seems more likely that this could be causing your fullness than IBD. The reflux and pain after eating also (if the pain is high up and feels like very severe indigestion pain rather than cramps in the lower abdomen) - reflux and gastroparesis are sometimes treated as conditions in themselves, classed along with other motility problems that affect the lower digestive system, but can also be the result of many other medical conditions.

I've had gastritis and easophagitis from reflux (distinct from Crohn's inflammation) which raised my calproctin level. The easophagitis was from stomach acid reflux, the gastritis was from bile reflux (bile from the small intestine coming back up into the stomach).

Motility disorders won't generally show on scans, scopes and biopsies except for the inflammation they can cause. As for another pill cam, my feeling is that when many tests have been negative is not usually worth repeating them, though of course that's purely my personal opinion.

 

[DustyKat]

Agree that the suggestions that mlp and UnXmas have made would be worth looking into as other disorders need to be ruled in or out along with IBD.

If you have a pill cam ensure you have a patency test first just in case a stricture is present.

Perhaps have an MRE instead of an MRI. The contrast used is specific to the small bowel. The oral volume required of you to consume is large though so it may be best done via a naso gastric tube given your intake issues.

Just as a side note. My daughter’s presenting symptoms, whilst undiagnosed, were always upper epigastric (stomach) and predominately not classic Crohn’s. IBD was not on the radar and she wasn’t scoped but it turned out it was Ileal Crohn’s all along. Her’s was terminal ileum so this should have been picked up during a scope in your case if disease was located there. She had a normal CT scan one week out from emergency surgery, the extensive damage found during surgery did not occur in one week. Imaging is not foolproof either, technique (by the radiographer or patient), misinterpretation of the results or masking by surrounding structures can all lead to a false negative result.

Dusty. xxx

 

[UnXmas]

Perhaps have an MRE instead of an MRI. The contrast used is specific to the small bowel. The oral volume required of you to consume is large though so it may be best done via a naso gastric tube given your intake issues.

The contrast may be a problem. I'm not sure off the difference between an MRE and an MRI, but I had an MRI of the small bowel with contrast not long ago. I have gastroparesis, and I only had to drink half the usual amount of contrast because I've had part of my intestines removed so didn't need the full amount, but the drink was still awful. NG tube won't always help if you vomit.

 

[DustyKat]

It is a considerable difference between a straight scan and an enterography…600ml as opposed to 1500-2000ml.

 

[Muppetgirl]

There is a neat overview of the whole range of motility disorders (across the entire digestive tract) here if you're interested...

http://www.agmd-gimotility.org/ed_library.htm

Its the third factsheet down under the general information heading (sorry couldn't link it directly).

Just gives an insight into how complex problems in this area can be.