Calprotectin test came back

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Suzi86

Suzi86

Joined
May 29, 2014
Messages
76
Hi all, so my doctor phoned me. I saw the name flash up on my phone and a little part of me panicked. It's usually me phoning them.

She said a normal calprotectin level is between 10 and 50. Mine is 304. The stool test was taken 2 days after my flare up stopped. So next stage is colonoscopy which will be this month :eek2:
 
It can take a while for calprotectin levels to come down. Many people are in the thousands while in a flare and my son's GI want the level below 300 while in remission. I am surprised they aren't just waiting a few months to re test and see where your levels are at. I know that the standards for kids are a bit different than what they are for adults, so perhaps that is why your Dr. would like to do scopes?

My son's highest was at 586, and this was while he was supposed to be in remission. He eventually got down to a 24, but it did take some time. No changes in meds just took some time.

I hope your scope goes well, and your numbers continue to go down.
 
Might at least be worth asking your doctor if you can get another stool test a few days before your scheduled scope, and revisit whether the scope is necessary if there is a huge improvement?
 
I have had symptoms for a long time and seem to suffer badly every alternate week and literally cannot get out of bed. I am happy to have the scope done, at least then I can start on medication if I get a diagnosis. I had 2 endoscopys before and after my gallbladder was removed in December but I still feel nervous about this...can't imagine it being pleasant!
 
Hi Suzi

Can I ask what your symptoms are?

I have my first GI appointment tomorrow and feel quite nervous. My calprotexton level was 153.
 
Hello, of course. Usually on a daily basis I am nauseous, lightheaded, have pain in lower abdomen, diarrhoea, constipation (sometimes mixed!), I have flare ups every so often where I can't leave the house, I am nackered all the time. I fall asleep so easy whereas before I used to struggle.

I hope you get on ok at your appointment, I am also nervous about my appointment (16th June) but the sooner we are diagnosed the better and can finally get treatment and start to feel better!
 
Hi Suzi

I had my appointment. Was a disaster to be honest. GI said 151 calprotectin is nothing and does not want to do any tests.

Going to my gp tomorrow to discuss where I go from here. I hope you have a better GI!x
 
Suzi86 said:
I have had symptoms for a long time and seem to suffer badly every alternate week and literally cannot get out of bed. I am happy to have the scope done, at least then I can start on medication if I get a diagnosis. I had 2 endoscopys before and after my gallbladder was removed in December but I still feel nervous about this...can't imagine it being pleasant!
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A colonoscopy should be fine, just make sure you have sedation because it can be very uncomfortable. I think irrespective you need to have the scope to confirm the diagnosis.
 
LE30 said:
Hi Suzi

I had my appointment. Was a disaster to be honest. GI said 151 calprotectin is nothing and does not want to do any tests.

Going to my gp tomorrow to discuss where I go from here. I hope you have a better GI!x
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Hello...do you have any update? What did your gp say x
 
Amanda89 said:
I was a bit baffled that your doctor had alarmed you with this, but I see you've posted in the undiagnosed club. Have you had a colonoscopy before?
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Hello, no I haven't had one before. Appointment is on Monday then I assume I will be given an appointment for colonoscopy then
 
Ahh okay. It's probably the best thing to do because although the calprocectin test can show you have inflammation, it doesn't make clear where it is. I hope everything goes well!
 
It was a good appointment I came out happy as the doctor was so nice. He listened to all my concerns and asked loads of questions. He said all my symptoms point to crohns so he wants to do colonoscopy in 2 weeks to see if there's inflammation etc. he said he would start me on treatment straight away if they see signs of crohns.

I asked what would happen if it came back clear and he said I would be tested for gluten and lactose intolerances. Bit backwards but I'm happy with his plan. Nervous but I want to get sorted! I lost a lot of weight unintentionally but still have a few stone to go so last thing I need are steroids!! Ah well. How r u? What's happening now x
 
That's great! Was that the rah?

I'm glad app went well and fx you know what you are dealing with very soon.

I'm ok. I've had lots of salad and fruit today as I'm in a catch 22 of needing to lose weight but having fruit and veg upsets my stomach! Will see how it goes tomorrow.

I've to repeat calprotectin test in a couple of weeks and depending on the result will go from there. My gp said if it's higher she is going to call the head consultant and get advice given the other consultant said it's just ibs and doesn't want to do tests. So confusing. But will ge there I'm sure.

Keep us posted!x
 
It was Greenock health centre and procedure will be done at inverclyde hospital. Would rather it was rah but just happy I'm being looked after.

That's good your getting to repeat the test! At the moment I find any solid food makes me nauseous so liquid diet helps. Hopefully you're not ill tomorrow! x
 
I've heard good things about Inverclyde :) I'm currently with RAH and I personally think you'll get better care at Inverclyde. Let us know how the procedure goes x
 
That's good to know then :) I've been with rah for over a year but GP sent me to inverclyde so I think I'm just out my comfort zone a bit. Will let you know how it goes - eeeek x
 
Yeah I know what you mean, I ended up having my scope done at Gartnavel instead of RAH, but they were really good (from what I remember anyway :p) one of my friends currently go to Inverclyde and she's never had any complains about it.
 
Hello. It's a week today. Prep starts from Wednesday then I've to take the Klean prep on the Friday. It's on the back of my mind all the time which isn't cool :( I've actually been feeling not too bad the past few days which is good but u just never know what's round the corner. How r u feeling x
 
Not long to go now at least!!!

I'm ok just he same to be honest and feeling defeated. I've still to repeat the calprotrcton test. I know it's going to come back high again and I've got alst constant pain at right side of stomach.
 
Was it a fecal calprotectin test you had done, or a blood draw? If my recent bloods and CT scan come back clear, I might ask to do fecal calpro. Good luck for your colonoscopy, keep us updated!
 
It was a fecal test. I had never heard of it before this is all new and interesting to me. Thanks for good wishes I will let you know how it goes eeek! x
 
I have started drinking the Klean prep, on third glass. This stuff is rank even with diluting juice in it. Colonoscopy tomorrow
 
Good luck with the prep - it's far worse than the actual colonscopy.
Hopefully they can get to the bottom of things quickly to get a dx.
 
After 1.5 hours that's the bowel movements. No pain which is good...well yet. The taste is so awful :( iPhones are a wonderful thing while doing prep as keeps my mind off what's going on - kinda
 
Hi all, well that's me home from colonoscopy. It wasn't pleasant but it was bearable. At times when it was uncomfortable the doc just eased the scope away from sore area. My colon looked normal but when it got to my lower bowel it was in a bit of a mess. Red, sore looking, inflamed and very bumpy. He took 7 biopsies which I will get back in a couple of weeks. Now I can eat which is a wonderful feeling lol! xx
 
That's good it's over Suzi. Did he say he thought it was crohns? Was it your small bowel that looked inflamed?x
 
He wrote crohns with a question mark on the report. He said my biopsies will be able to give me a definite answer. I had 7 biopsy a taken - 4 from the bad area and 3 from another area. It looks like the area that joins the large and small intestine is the inflamed part. I managed 3 out of 4 kleen prep so he could go in really far. I feel really bloated and crampy now after I ate. How r u xx
 
Fx you hear soon your results. That was great you managed all of that Kleen prep and he could get a good look!

I'm ok. All is the same. Going to do the calprotectin test this week and take it from there. I know it's not going to come back normal. Which then means I will be referred to GI again to a different consultant for a second opinion. Just dreading dealing with all the waiting again.

Keep us posted x
 
I never want to do the kleen prep again, it gives me the boak thinking about it! I felt happy he managed to do the full scope so quite proud of myself lol.

It's good your doing the calprotectin test again, the waiting is hard especially when you just want a medication to take all the symptoms away. I must say inverclyde was a great experience today, I had 3 nurses all to myself and they were amazing x
 
Yeah I had Klean prep for my colonoscopy. If I need another one in the future I am not taking that again, they will have to give me something else! Have heard Picolax is much better and much less to drink.

I mean they are all going to clean you out but not having to drink litres of a disgusting compound would be an improvement!
 
That's the bit I'm dreading when I do eventually get the colonoscopy the prep!!!! That's great you had a good experience. I think I just had that one dodgy GI experience but I will be asking to see a different one this time.

I had a terrible night last night. I've posted it in the general discussion part to see if I can get some help on any ideas what could be going on.
x
 
Hiya, I was at the doctors today and my colonoscopy results have came back normal. But that doesn't mean much as the doc and specialist know something isn't right. The hospital want to see me again to do more tests - ct scan and barium meal. All still thinking ibd as I tick all the boxes, just need to find out what. So pretty down in the dumps now but I understand it's a long process. How are u x
 
Suzi86, best wishes for you to get a helpful diagnosis!

One thing you might consider is to try the Specific Carbohydrate Diet, the GAPS diet, or the Paleo diet for a month. Information about all of them is online. These no-grain low-carb diets help a lot of people with Inflammatory Bowel Disease and a range of other conditions. It really worked a miracle with my daughter.
 
How did everything go suzi? My faecal calprotectin came back 742 and my colonoscopy is very soon! Nervous, sigmoidoscopy was uncomfortable enough! lol Also having an MRI where I have to drink some fluid to light my insides up????
 
Hiya, hope you are feeling ok? My colonoscopy wasnt too bad I was a nervous wreck but when I was uncomfortable they moved the scope to relieve the pressure. I was talking all the way through it about festivals (blame the pethadine lol) and I watched everything on the screen which I am glad about as I was witness to a mess in my lower intestine.

I was at hospital last night as I have a pain in my left side, GP checked me over in my practice then sent me up. The hospital sent me home with stronger painkillers and are going to try and organise my MRI a bit sooner. Hopefully within next 2 weeks. I think the fluid scan you are getting is the barium meal? i could be wrong though. Let me know how that goes. Your calprotectin is high, I was shocked at mine lol but yours is double. What other symptoms do you have
 
Suzi86 said:
Hiya, hope you are feeling ok? My colonoscopy wasnt too bad I was a nervous wreck but when I was uncomfortable they moved the scope to relieve the pressure. I was talking all the way through it about festivals (blame the pethadine lol) and I watched everything on the screen which I am glad about as I was witness to a mess in my lower intestine.

I was at hospital last night as I have a pain in my left side, GP checked me over in my practice then sent me up. The hospital sent me home with stronger painkillers and are going to try and organise my MRI a bit sooner. Hopefully within next 2 weeks. I think the fluid scan you are getting is the barium meal? i could be wrong though. Let me know how that goes. Your calprotectin is high, I was shocked at mine lol but yours is double. What other symptoms do you have
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I feel better yeh thanks, at the moment no symptoms at all bar occasional stomach pain which isn't that often, perhaps as Im not eating anything to start it off. But bowel movements are fine overall; again probably due to my diet. I have had a sigmoidoscopy which is a 30cm camera and that was uncomfortable so a colonoscopy is going to be a totally different experience! lol The MRI according to my GI will consist of a injection/fluid put into me so the MRI scans light up if there is any inflammation.

My calprotectin was high my GI said yeh, and it is a really good test for IBD likelihood - in the UK anything over 120 is abnormal. Under 50 is normal and not IBD. My bloods came back normal so I thought nothing of it until GI rung me with calprotectin results and what I do know (from my GI himself) is calprotectin is one of, if not the best indicator of inflammation and IBD even if bloods are normal.

My symptoms when I did calprotectin were diarrhoea with mucus occasionally, and stomach cramps, I originally thought I had IBS as I had no weight loss or bleeding but I was informed that they aren't always a symptom whereas Diarrhoea and cramps are common as muck in comparison.
 
Everything you said there I agree with. Your GI sounds good also. I am still waiting for my referral as I have always been with the surgical dept as my symptoms started 2 weeks after I had my gallbladder removed. Shouldnt be long to wait as the doctor from the hospital last night is writing to them to hurry things up a little. Whats your next steps then?

Ibligh - thank you so much for that information I will go and have a look just now at the diets to see if they can improve me a little. Its tiring having this constant feeling, a full time job and 2 young children. Early night is on the cards for me tonight :) cannot wait to get in from work, jammies straight on and lounge around with the kids! xx
 
Suzi86 said:
Everything you said there I agree with. Your GI sounds good also. I am still waiting for my referral as I have always been with the surgical dept as my symptoms started 2 weeks after I had my gallbladder removed. Shouldnt be long to wait as the doctor from the hospital last night is writing to them to hurry things up a little. Whats your next steps then?

Ibligh - thank you so much for that information I will go and have a look just now at the diets to see if they can improve me a little. Its tiring having this constant feeling, a full time job and 2 young children. Early night is on the cards for me tonight :) cannot wait to get in from work, jammies straight on and lounge around with the kids! xx
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My next steps are wait for the letter from hospital, due today or tomorrow, ring them back decide an appt. date. Then hopefully get some answers lol. My GI is really good, any questions I fire at him he is right back with the answer. And he is clear too, he doesn't make you think "I wonder what he meant by that?" I forgot to add with the symptoms, after speaking to my GI yesterday, if the symptoms go and you feel great, it doesn't make a difference really as the IBD can still be simmering away in the background until it's flared up.
 
He sounds great you are lucky. I hope to get someone like him! I like this bit as I have always wondered about this - 'if the symptoms go and you feel great, it doesn't make a difference really as the IBD can still be simmering away in the background until it's flared up' Thanks for that info.

Its at the stage I dont know what feeling well is like. I was at my GP last week and she took my temp and it was high and I didnt realise, my heart was a bit racy and again I didnt know. Its just what I have accepted as normal! How mad is that.
 
Suzi86 said:
He sounds great you are lucky. I hope to get someone like him! I like this bit as I have always wondered about this - 'if the symptoms go and you feel great, it doesn't make a difference really as the IBD can still be simmering away in the background until it's flared up' Thanks for that info.

Its at the stage I dont know what feeling well is like. I was at my GP last week and she took my temp and it was high and I didnt realise, my heart was a bit racy and again I didnt know. Its just what I have accepted as normal! How mad is that.
Click to expand...

That bit about it simmering away is what I always wondered too, and he said it can always happen, sometimes you can go years and years with zero symptoms.
 
I would be very interested for all of you who took the calprotectin test are holding up, if there's been any update or changes in your symptoms.

At my absolute worst in terms of symptoms my calprotectin test came back as 153? 151? something to that extent.

It has been almost a year and my stools aren't getting much better (hover around the loose stool/ smelly stool category usually) doctor is pushing the idea of an eosinophilic disease as there is no damage from all forms of imaging/scopes/biopsies we've done, only abnormal marker was the calprotectin, he's still pushing the idea of several food intolerances.

uh, and happy holidays! lol
 
ezgoindude said:
I would be very interested for all of you who took the calprotectin test are holding up, if there's been any update or changes in your symptoms.

At my absolute worst in terms of symptoms my calprotectin test came back as 153? 151? something to that extent.

It has been almost a year and my stools aren't getting much better (hover around the loose stool/ smelly stool category usually) doctor is pushing the idea of an eosinophilic disease as there is no damage from all forms of imaging/scopes/biopsies we've done, only abnormal marker was the calprotectin, he's still pushing the idea of several food intolerances.

uh, and happy holidays! lol
Click to expand...

Mine came back 742 I have since had a colonoscopy on the 20th October and was told I had Proctitis (inflammation in rectum only) so just awaiting biopsy results. Also have a follow up with GI tomorrow (nov 10th). Symtpom wise, to be honest, I have been on the whole a lot better since I gave my stool sample in for calprotectin test- which was around July 29th. Occasional cramp, and loose stool, but plenty of normal bowel movements with normal stools too, infact id say overall I get more normal than loose. But that could just be due to the fact what I have eaten hasnt triggered anything. Will post tomorrow what my GI says! Best of luck
 
Hi all,

I am officially diagnosed. I have Crohns Disease. It has been a long wait but finally I have an answer and can be treated. I was in admitted to hospital again last month and they did more tests. I had a new calprotectin test done and the result was 1732. I met my GI specialist on Friday and he is the nicest man and spent so much time with me. It hasnt sank in yet but I am sure it will soon. I am waiting for an MRI scan to determine how advanced it is. It is in my lower intestine in the terminal ileum.
 

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