High calprotectin but no blood marker - anyone had this?

[JJSP]

Hello,

I am very new so apologies if this is in the wrong place.

I've been having tests for IBD for a few months. I've had a colonoscopy which was clear apart from a few small ulcers (biopsies of which were clear), and an MRI which was fine.

I've had two calprotectin tests, the second of which was on the day of a really bad set of symptoms, specifically a lot of pain. The first came at 120 which was indeterminate, but the second was 1300.

The weird thing is the blood test I had at the same time as the second cal test did not show any inflamation markers.

So my question is, is it more likely that the cal test was wrong somehow, or is it possible to have such a high cal test without a blood marker as well? Has anyone else had such a result? I suppose I'm hoping that it's IBS instead of IBD (as all the other tests seem fine) and looking for some reassurance? Is it possible to have such a high cal test for reasons other than IBD?

Thank you for reading!

Jane

 

[Jabee]

Some people never have blood markers for crohn's. That's one of the reasons it is hard to diagnose. Did your doctor indicate a cause for the ulcers seen on your scope? Ulcers aren't normally present in the intestines. And a majority of people don't have biopsies that are positive for crohn's. What are your symptoms?

 

[eleanor_rigby]

Some people never have blood markers for crohn's. That's one of the reasons it is hard to diagnose. Did your doctor indicate a cause for the ulcers seen on your scope? Ulcers aren't normally present in the intestines. And a majority of people don't have biopsies that are positive for crohn's. What are your symptoms?

Agree the fact that ulcers were seen on your scope I would say is the most important factor. It is one of the main ways of diagnosing Crohn's as IBS do not cause ulcers. Small ulcers will also not often be picked up in an MRI.
A fecal calproctectin is a specific test indicating inflammation in your bowel. Again a positive result is used to distinguish IBS patients. It is much more specific than a blood test. Many Crohn's patients will have normal blood test results

 

[JJSP]

Thanks for your replies.

The doctors said the ulcers might have been caused by the laxative they gave me for the colonoscopy. It's really interesting you say that biopsies can be negative, as I had assumed because the biopsy was negative, that therefore the laxative must have been the issue. Similarly really interesting that bloods can be negative.

The issues that I've had stemmed from anaemia caused by a severe iron deficiency that was picked up on through a blood test after I'd been feeling very ill and run down. I was given iron supplements, but because my iron went up and then down again the GP referred me to gastro.

Whilst taking the iron supplements I started to get gut symptoms. I have tended to be a bit constipated, but this became worse. And then on three occasions I've had severe stomach pain and cramps which have been debilitating for about 24 hours, and then left me with a consistent low level of pain in my guts for 4 or 5 days. That low level of pain also comes and goes even without being preceded by the severe attack, but I can't really attribute a particular trigger to it.

The last attack, which was the worse and where I got the 1300 result, was preceded by a couple of days where I ate more bread/pasta (which I've been trying to avoid) and got quite constipated. The waves of pain made it feel like I needed the toilet, but I would try and not be able to.

The other thing that happened is that a patch of skin on my shoulder became red and itchy. It has now subsided, but I've had it there before and the doctors said it was probably a skin infection. However my reading around IBD suggests that this perhaps related, and I think the last time I had it was also around the time of another episode of stomach pain.

Sorry for the very long essay! Just keep flipping between thinking I should be ignoring things, and worrying about whether it's really IBD.

So how does Crohn's get diagnosed then? If blood and biopsies can be negative? And all the literature suggests that diarrhoea is more likely than being constipated, so again would the constipation not suggest that it's not IBD?

Jane

 

[eleanor_rigby]

Your symptoms are the same as mine before I got diagnosed in terms of the cramps. I was diagnosed based on my GI seeing ulcers on my scope and actually the pathologist did also say for me that my scope biopsies did not indicate Crohn's. However my GI made the diagnosis anyway based on her knowledge and expertise.
Ulcers from colonoscopy laxative? Seriously? Get a new GI.

 

[eleanor_rigby]

Also I never get diahorrea, probably why it took years for my diagnosis.

I would suggest you get a pill cam if you want further testing. But from what you have said so far I would bet it's enough for a Crohn's diagnosis.

 

[JJSP]

They did say the ulcers were quite small.

They're going to do a pill cam test and an endoscopy (mouth down this time) too.

It's really confusing! Does a Crohn's diagnosis mean you have to take medicine? It seems like a really imprecise way of 'diagnosing' something. Meaning it seems like a weird process by which you might then start having to medicate yourself??

But perhaps I'm just getting ahead of myself...

Jane

 

[Jabee]

I suffer from constipation not diarrhea as well. Constipation is more common with crohn's in the small intestine where mine is. Anemia is also common when the disease is in the small intestine. Many people require iron infusions when they are too anemic. I'm glad you are having an endoscopy and pill cam as well. Plus I've never heard of ulcers being a result of colonoscopy prep. The large intestine can get irritated, but not ulcerated (even with small ulcers) literally overnight after the prep.

 

[eleanor_rigby]

They did say the ulcers were quite small.

They're going to do a pill cam test and an endoscopy (mouth down this time) too.

It's really confusing! Does a Crohn's diagnosis mean you have to take medicine? It seems like a really imprecise way of 'diagnosing' something. Meaning it seems like a weird process by which you might then start having to medicate yourself??

But perhaps I'm just getting ahead of myself...

Jane

The size of the ulcers are irrelevant to the diagnosis.

That's really good they are doing those tests - it sounds like they are taking you seriously. Hopefully they should lead to a definitive diagnosis.

If you are diagnosed with Crohn's disease you will be prescribed medication, which you will need to adhere to indefinitely. It's of my opinion that taking medication for this condition will be life-long (while there is no cure). That is because of my experience with the condition having complications for me when I do not take medication. However, other people are of the opinion that they are able to stop medication and be OK.
The type of medication prescribed to you will depend where you live. Usually the medication that will be prescribed to you indefinitely is a tablet called azathioprine/imuran/6mp, which suppresses your immune system. Other stronger medications include remicade and entyvio, which are given once every few weeks at the hospital through an infusion, or humira and stelera, which involves injecting yourself.

 

[JJSP]

Does taking a drug to suppress your immune system mean that you're more vulnerable to other illness/infections? Think I'm going to need to do some more reading up!

Jane

 

[eleanor_rigby]

Does taking a drug to suppress your immune system mean that you're more vulnerable to other illness/infections? Think I'm going to need to do some more reading up!

Jane

Yes unfortunately so, but many people do not experience this if careful. If you google patient leaflets for azathioprine, remicade and humira - these are the most commonly prescribed medications at the moment. Be aware there are side effects to all medications and you have to balance risks (often 1 in several thousands) vs benefits.

 

[aypues]

I have Crohn's of the small intestine and I had an elevated fecal calprotectin result twice - both were around 800. I started on Remicade and Cellcept (similar to azathioprine/6mp but less side effects for me) and doing much better. I haven't noticed any unusual infections or susceptibility to colds/flu etc, but I do make sure to get the quadrivalent flu vaccine annually.

 

[JJSP]

So is it the case that you can be diagnosed simply through assesment of symptoms and a raised calprotectin? Without any confirmation through biopsy or blood tests? Or do they need to see something in your gut through the pill test/MRI/endoscopy?

Sorry, I think I've asked this question already. Just still a bit head-spun after a rather bad night's sleep worrying about what all this means.

Is Crohn's hereditary? If I have it does it mean that my kids have a higher chance of having it too? My mum has had issues all her life, but been given a IBS diagnosis.

Jane

 

[eleanor_rigby]

So is it the case that you can be diagnosed simply through assesment of symptoms and a raised calprotectin? Without any confirmation through biopsy or blood tests? Or do they need to see something in your gut through the pill test/MRI/endoscopy?

Sorry, I think I've asked this question already. Just still a bit head-spun after a rather bad night's sleep worrying about what all this means.

Is Crohn's hereditary? If I have it does it mean that my kids have a higher chance of having it too? My mum has had issues all her life, but been given a IBS diagnosis.

Jane

My GI made a diagnosis based on seeing ulcers in my terminal ileum (one of the most common locations for Crohn's to manifest). It is the presence of ulcers that are key, added together with you having small bowel symptoms, a high fecal calproctectin, anemia, then yes that should be enough. Hopefully the pill cam will really reveal what's going on for you though either way.

Yes Crohn's has a genetic component. I have Crohn's and my dad has ulcerative colitis. My brother so far does not have any IBD though. If I have children yes they would be at higher risk but hopefully that means that if they have any symptoms they would be acted on quicker (not fobbed off with the IBS diagnosis and diagnosed sooner).

Do you take an NSAIDs?

 

[JJSP]

Thanks eleanor_rigby, it's really useful to hear other's experience. I don't take NSAIDs having used them too much post the birth of one of my children and developed a sensitivity to them, i.e. they made my stomach hurt. So I haven't taken any now for about 6 years.

The ulcers were found right at the top of the colon where it connects to the small bowel, so again that sounds quite consistent with your experience and indeed with a couple of others on here.

I guess the pill cam is the next step on the road to working out whether this really is Crohns. Luckily they can do that quickly, but I have to wait another 5 months to see the Gastro doctor again because that's the soonest they could give me an appointment. Hey ho.

Jane

 

[eleanor_rigby]

OK I was just wondering because NSAIDs can cause ulcers in the digestive tract but I believe it would be recent use of them for them to be relevant here.

Yes that is where my ulcers are too. A pill cam should be able to reveal if you have any ulcers higher up in your small bowel where a scope cannot reach. When is this happening?

In the mean time try not to worry. It sounds like if it is crohn's, they have caught it early, which means you have a great chance of getting into remission with medication. Many users have years and even decades of remission where they feel like they do not even have Crohn's.

 

[ncman]

For me, I've always found calprotectin more accurate than bloods, as a high calprotectin and no sign of bloods can indicate if you're about to go into a flare (or coming out of one, if calpro is still high but you're feeling well, and bloods show nothing)...best thing is to keep an eye on it...it shouldn't stay raised.

OK I was just wondering because NSAIDs can cause ulcers in the digestive tract but I believe it would be recent use of them for them to be relevant here.

I believe I've read, although can't remember where, that ulcers can linger even 12 months post NSAID use.

 

[eleanor_rigby]

I believe I've read, although can't remember where, that ulcers can linger even 12 months post NSAID use.

Thanks for clarifying I wasn't too sure of the timeframes. However, as the OP reported not using NSAIDS in over 6 years it won't be a factor for the ulcers seen on her scope.

 

[JJSP]

Thanks both. I've calmed down a bit and am now thinking I'm just going to have to wait and see. The GI is pretty sceptical about it being Crohns and I've had no problems with weight loss etc.

I've got the pill cam in a month or so, and an endoscopy at some point (haven't had the appointment through yet). The really extreme pain hasn't re-occurred, and happened after eating lots of bread which I've been avoiding ever since.

So I figure I'll just wait for the tests and hope the pain doesn't come back. Maybe the high cal test was just some sort of weird finding. I'm hoping it's just a rip-roaring case of IBS and I'll be able to avoid problems by working out what food tends to set me off.

I got totally freaked that it was Crohns and therefore stressed and therefore loads of stomach pain - total self-fulfilling prophecy! Need to chill and see what comes rather than deciding the worst is true!

Thank you for all your time and help. It was very good to talk to people who know the real deal.

Jane

 

[eleanor_rigby]

IBS is a functional disorder, which means no pathological changes to the bowel occur with it. Therefore it does not cause ileal ulcers or high fecal calproctectin results. A high fecal calproctectin result means they found a high amount of inflammation in your bowels. IBS does not cause inflammation and would not cause a fecal calproctectin result of 1300.
I'm glad you are feeling better and I say all this not to worry you but just to ensure you keep aware. I went misdiagnosed for years and I wish I had someone tell me these things. Doctors can so easily dismiss you.
Another thing to say is that if it is IBD it will show itself to you again through symptoms. Therefore the pain will come back so you know to let the medical people know if that happens. I hope it doesn't and I hope it is something else causing this.
Also the endoscopy is less likely to reveal anything compared to the colonoscopy if it is IBD. Crohn's most commonly presents in the ileum and it is rare to see it in the stomach/duodenum. However, I think the pill cam will really help you get to the bottom of all this.
Good luck

 

[Glockola]

CRP is only high in systemic inflammation. And is not always sensitive or specific for crohns.

Fecal calprotectin is a much more specific marker for local inflammation throughout the gastrointestinal tract. It can be detected in many forms of IBD and sometimes also in celiac disease.

Calprotectin can temporarily be raised after NSAID use and infections.

Even IBS sometimes show a very mildly raised calprotectin count.

Eleanor_rigby - IBS is not a functional disorder, that is a very outdated theory.
IBS is caused by a reactive intestinal immune system. Increases in neuroendocrine cells and intestinal permeability is found in patients with IBS.

Some forms of IBS also seem to overlap with microscopic colitis, scientists call it indeterminate colitis.

IBS is common after gastroenteritis, diverticulitis, NSAID use and also in IBD patients in remission.

 

[MizzSarah]

It took a colonoscopy and a biopsy to determine I had Crohn's. I had no extreme weigh loss(weight gain actually) but I was experiencing the classic symptoms of it. My blood work was otherwise normal except for a little elevation of inflammation etc(doctors thought it was elevated because I had swollen limbs) i had joint issues well before the onset of any Crohn's symptoms.

Had it not been for a family history of Crohn's and not being able to eat or stay out of the bathroom I doubt anyone would have given me a second glance.

 

[MizzSarah]

It took a colonoscopy and a biopsy to determine I had Crohn's. I had no extreme weigh loss(weight gain actually) but I was experiencing the classic symptoms of it. My blood work was otherwise normal except for a little elevation of inflammation etc(doctors thought it was elevated because I had swollen limbs) i had joint issues well before the onset of any Crohn's symptoms.

Had it not been for a family history of Crohn's and not being able to eat or stay out of the bathroom I doubt anyone would have given me a second glance.

*on a side note before all of this happened I did learn I had some kind of marker saying I was at high risk for Crohn's. My dad has same blood type and marker

 

[eleanor_rigby]

Eleanor_rigby - IBS is not a functional disorder, that is a very outdated theory.
IBS is caused by a reactive intestinal immune system. Increases in neuroendocrine cells and intestinal permeability is found in patients with IBS.

Some forms of IBS also seem to overlap with microscopic colitis, scientists call it indeterminate colitis.

IBS is common after gastroenteritis, diverticulitis, NSAID use and also in IBD patients in remission.

Interesting, please can you post the research journals that categorically disprove this theory of IBS? Last I checked it was still regarded as a functional disorder, but there has been emerging evidence over perhaps the last 2 years suggesting an alternative perspective whereby IBS may cause inflammatory cell infiltration, increased permeability, and changes in neuroendocrine system in the gut. However it was my understanding that these were just alternative theories. All established bodies such as the NHS state IBS does not cause any pathology. It does not cause any detectable bowel abnormalities. That is the current viewpoint and other emerging views are just other perspectives that are not widely accepted. RCTs would be needed to prove different to the current accepted view of scientists.

 

[Glockola]

...

 

[Glockola]

Technically, IBS is not a single disease/syndrome, and for a long time was regarded as a functional disorder only.
There is as you said not yet any definitive explanation or general agreement for what causes IBS.
The changes in intestinal histology is often subtle enough to escape detection during routine endoscopy and biopsy. There also seem to be no general agreement among pathologists as to what exactly constitutes a "normal" histological finding.
Tests such as mucosal permeability and quantitative cell counts can only be done in a study setting with a control group. There are no tests available for the individual patient that can diagnose an "irritable bowel".

 

[SaxLady]

My Dr Diagnosed Crohns with endoscopy/colonoscopy and capsule endoscopy. It is early stage. He did not prescribe anything except antibiotics for SIBO, (which is implicated in the disease in many people). I use diet (AIP Paleo) to control my symptoms and have done pretty well. Recently had a small flare up when I ate a lot of carbs which are not allowed on my diet, and ate some questionable food. There are some great podcasts and books about controlling gut inflammation in a more natural way. That is the way I have been able to go, and I continue to improve.