Why has my Gastroenterologist diagnosed me with IBS when my Calprotectin level is 1700?

[catherinecornyn]

Health problems for about a year, bowels struggling to move, not typical constipation (stools are soft), blood and mucous in them, only diarrhoea and faecal incontinence on a couple of occasions. Nausea, headaches, tiredness, dizzy turns, aching thighs, swollen abdomen, but no pain or stomach cramps. I just don't understand how my Gastroenterologist can be sitting looking at a Calprotectin level of 1700 and say in her opinion I have IBS. No other tests so far have shown any possible cause of symptoms. I eat a very healthy diet.

Any help much appreciated.

[denvajade]

Please ask for a Dysbiosis test.

[catherinecornyn in reply to denvajade]

Unfortunately l fear it's something more serious than gut bacteria imbalance. One of my symptoms was severe bleeding from the bowels.

[Lukkkas]

Probable 170...at 1700 your guts would "explode".

[catherinecornyn in reply to Lukkkas]

I can assure you they were, l seen the docs results on her computer, and both my gp and the useless gastroenterologist l seen told me my Calprotectin levels were over 1700, a positive test is generally over 200, in Crohn disease severe inflammation can cause a result of over a 1000, so you quite obviously don't know what your talking about. Calprotectin levels are used as a marker to differentiate between IBS and IBD, in IBS Calprotectin levels are not generally raised, as IBS is not an inflammatory condition.

So for a gastroenterologist to diagnose someone as having IBS when their Calprotectin levels are over 1700 is shocking!

You do know that raised levels of Calprotectin are an indication of inflammation in the gut! Do you?

How high raised is an indicator of severity of inflammation.

So please don't come on here and tell me l made a mistake with my levels, and that it was actually 170, not 1700!!!

[Catoonipop]

Hi, I've just had my calprotectin results back at 1606! Did you get any further with diagnosis? I'm due at the gasto consultant in a month?!

[catherinecornyn in reply to Catoonipop]

No, unfortunately l didn't. I have given up with the Doctors to be honest, and the gastroenterologist l was referred to was completely incompetent! Was pretty obvious l wasn't going to get anywhere with her. I still have symptoms (although not as severe as they previously were) but just have to put up with them, quite shocking really! The tiredness gets me down the most.

[catherinecornyn]

The Gastroenterologist l seen never requested to see me again. I have been so disgusted by the way I've been (my severe symptoms) have just been cassualy brushed aside. After some initial improvement in my symptoms they have got severe again. I have now moved to a different area, will be under a different gp, intend to ask for further investigations. Not convinced l have IBS, worried it's something more serious that no one is bothering their shirt to get to the bottom off.

[Catoonipop in reply to catherinecornyn]

It's just so hard trying to find someone that will actually listen isn't it! I was at a&e this morning in massive amount of pain stomach/back/hip/groin/leg... came out with co-codamol... still in pain. Worries me sick. Maybe a fresh pair of eyes will help you. Keep pushing.

[catherinecornyn in reply to Catoonipop]

I have moved to an area (rural) with far better doctors, and no long waits for a lot of tests, so hopefully if my symptoms continue getting worse they may be able to get to the route cause. The worry is if there is something more serious going on it may cause a lot of internal damage that may be irriversable. I find it hard to believe that IBS could cause constant rectal bleeding, even while no bowel movements are occurring, also Calprotectin levels are not normally raised in IBS, certainly not likely at that level. It is also well known that IBS is not an inflammatory condition. Increased Calprotectin indicates inflammation of the bowels, level of elevation is directly related to level of inflammation, yours, like mine was massively elevated (normal levels 0-120), so we both had very high bowel inflammation. My dizzy turns are getting worse again, and I am now suffering from abdominal pain too, where as before l had only slight discomfort, but no stomach pain as such, l not only get aching and pain in my legs, l also get a burning sensation, and now getting tingling in my feet. I do not have constipation, my bowels are just not functioning, but no one would listen to me. I hope you get things sorted. My only advise to you is to not give up, keep pestering them, with the NHS you have to be very vocal. I say this from experience, as l am an x NHS worker and a Biomedical Science graduate, l know how complicated the body is, and how hard it can be to diagnose something, and the possible consequences of a wrong diagnosis.

Best of luck Catherine

[catherinecornyn]

Well, moved to my new area six months ago and not been called in to see my new gp. Guess (as I've always known) they don't give two hoots about you. Still getting headaches, sore legs, dizziness, tired all the time, and continuing bowel problems. Swelling in abdomen not going down. Pains and aches round my abdomen, back, and pelvic area. Can't even take painkillers because if it is liver problems (which l think it is) l could damage my liver further.

Still can't believe a gastroenterologist can diagnose IBS without even seeing you, speaking to you, hearing your symproms, and with a Calprotectin level of 1700, then order another colonoscopy before seeing you when you've already had one, and it didn't show anything to explain your symptoms. She had one consultation with me after she done the colonoscopy, and still diagnosed me with IBS, think she just wanted to wash her hands of me, and get rid of me. Totally disgusted, if l end up with liver disease due to untreated liver damage I'm going to sue them. Totally disgusted, what else are you supposed to do when no one will listen to you or help you.

[catherinecornyn in reply to catherinecornyn]

Well, been living in the new area well over a year now, never been called in even for a check up as a new patient, my partner assured me I'd be called in after my birthday as that's what they do (a yearly mot), now turned 60, hmm, nothing!

[Miti333]

Hi Catherine! Have you fixed your problem?

[catherinecornyn]

No l haven't. Have given up with doctors to be honest with you, l still have symptoms (although not as severe as they previously were), some days worse than others, but l just cope with it. The tiredness is the thing that bothers me the most, constantly tired and lethargic.

[Miti333 in reply to catherinecornyn]

Hi Catherine. I have most of your symptoms, too,except blood in stool. My calprotctectin level was 400 but all other tests were good. Had endoscopy, colonoscopy, MRI, capsule and didn't find any inflammation. And i had giardia but i can't believe i have so many symptoms because of this. Don't know what to do.

[catherinecornyn in reply to Miti333]

A Calprotectin level reading of 400 does indicate gut inflammation, no matter what they say, just because they cant find the cause, or the inflammation has died down by the time further tests are done (which is exactly what happened to me). I had another Calprotectin test later on after the first result of over 1700, I knew even before I handed in the sample my gut inflammation was drastically reduced, I even told my gp so when I handed in the sample, the result came back and they said it was normal, but I know within the last year the inflammation has escalated again several times, I can tell by my symptoms (including bowel problems and movements). All I can advise is to not accept them fobbing you off, keep going back if your symptoms persist. There are different types of IBD, some of which dont show up on colonoscopies as they affect the underlayers of the collon, so no visible sign can be seen with a colonoscopy, a biopsy needs to be done. The Gastroenterologist I seen just wanted to wash her hands of me, she was not interested. Inflammation of the gut can be caused by infection including parasites. Diarrhoea was not one of my symptoms (although I did have fecal incontinence on a number of occasions), my bowels would just not move, was not constipation either, had constipation all my life and I knew this was something completely different from the start. I was passing a lot of blood, including clots, had severe nausea, severe headaches, dizzy turns, severe tiredness with little or no energy, aching thighs, but no stomach pain, just abdominal swelling which is still there, I had unexplained weight loss too, which is starting again. Good luck.

[Miti333]

Hi Catherine. I'm sorry you don't feel good again. What 's your last calprotectin?

I just don't have enough energy to fight doctors, Catherine. They say it's all in my head and sent me to psichiatric. They found me giardiasis but had treatement for that and still have different symptoms. I keep tell them that I know better my body but they don't want to listen to me. Don't know what to say. I feel very depressed. Even my family say it 's in my had because all my tests were good. Sorry for my worries but don't know what to do.

[Hidden]

Hey I’ve just experienced the exact same thing my levels were 1500 and was sent for colonoscopy which came back with mild inflammation ... gastro told me he thinks I’m just constipated with ibs. Completely ignored the fact I’m 21 and chronically fatigued, in lots of pain and my hair is falling out. Just wondering if anyone’s had any second opinions as I’m young and 4 years of my life has already been taken up just to convince the drs to do a calprotectin test...

[Kilgh in reply to Hidden]

Have you had any stool tests? To check for parasites or bacterial nasties? Low grade inflammation can be a sign of IBS. Are you experiencing alopecia? Because that is a sign of IBD. High Calprotectin plus hair loss is a red flag.

I would get a second opinion.

[Hidden]

Only thing that’s flagged up is the inflammation. I would say alopecia is a bit extreme for what I have but I used to have hair that broke hair ties it was so thick and now my hairs so fine I can see my scalp in some bits ... not to mention a stabbing pain in one specific part of my stomach nearly all the time. I will go along with the six weeks and then second opinion.