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06-26-2013, 09:29 AM   #1
Gabi
 
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Help!?

Hi everyone
As you all know some of my story I have just got a letter from my GI saying I have elevated levels of calprotectin does this mean I have a diagnosis!? Does this mean its IBD not IBS!!??
06-26-2013, 04:32 PM   #2
DustyKat
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Hi Gabi,

IBS does not cause elevated levels of faecal calprotectin. For elevated levels to occur there has to be some level of change to the structure of the bowel. IBS does not cause structural changes.

There are other reasons for elevated FC levels aside from IBD...intestinal cancer, some bacterial infections, erosions/ulcers caused by NSAID's...but if in your case they are deciding between IBD and IBS and those other causes are not on the table then you can throw IBS off the table too.

Dusty. xxx
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06-28-2013, 11:29 AM   #3
SarahBear
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Gabi. Like Dusty said, this doesn't definitively diagnose but it is definitely a step in the right direction! I hope you get answers soon. Please continue to keep us updated.
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06-28-2013, 07:45 PM   #4
Gabi
 
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Thanks everyone but I'm so close and I don't understand why is this not enough? I just want it to be over I need this to end. It's even 15 agonising months and I couldn't take another day. My doctor has requested blood to be don enut how is this going to help?
Reall so close I just want treatment and to be out of pain and try to get on with my so called life. So fed up. Having a large pity party today
06-28-2013, 08:13 PM   #5
DustyKat
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Oh Gabi...

I am sorry but I am not familiar with your story so don't know what has been done.

A faecal calprotectin doesn't provide a diagnosis, it is a tool to help you obtain one. The reason being is that although it is specific to the bowel it isn't exclusive to IBD. I know it is of no use to you me saying this but one diagnosed it is a very useful test to gauge the progress of your disease in both negative and positive ways.

The gold standard of diagnosis still remains scopes with supporting positive biopsies. For those whose biopsies are negative a confident and knowledgable GI will diagnose on what they have seen when scoping. My son fits that category of being diagnosed with negative biopsies but it also helped that he had classic symptoms and a sister with Crohn's as well.

I hear you Gabi and totally understand your desire to find answers and relief. Although I don't have Crohn's I watched my own daughter suffer 18 months of being undiagnosed. It surely was the most heartbreaking and helpless I have ever felt.

What bloods are being requested?

Dusty. xxx
06-29-2013, 02:40 AM   #6
bozzylozzy
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Im so sorry you are still stuck with no real answers. In some cases it is baby steps to get a diagnosis. This is one of those steps.. it will help aid a diagnosis in the end.. but as dusty says - the test could show other inflammatory causes, not just IBD.

I know you have had a rough time through this last 15mths.. but is your GI on your side? (I know previous GIs have fobbed you off and said some awful things)
Hopefully they could at least trial some medication to see how your illness responds.

I wish everybody could find out what's wrong with our bodies asap.. you know what a lot of our stories are like in the undiagnosed club. Story of my life! I dont show classic signs of anything half the time haha.
But you know we are here to help anytime. Sometimes AI illnesses can take years to manifest fully and reveal themselves to the doctors. Xxx
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06-29-2013, 08:32 AM   #7
UnXmas
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Thanks everyone but I'm so close and I don't understand why is this not enough? I just want it to be over I need this to end. It's even 15 agonising months and I couldn't take another day. My doctor has requested blood to be don enut how is this going to help?
Reall so close I just want treatment and to be out of pain and try to get on with my so called life. So fed up. Having a large pity party today
I understand the frustration very well, it took years to diagnose me. It's important to remember though that the treatment for Crohn's is extremely harsh, and many medications used for Crohn's come with a lot of risks and side effects. If it's not yet certain you have Crohn's, doctors cannot give you Crohn's meds as if you actually have a different condition, one for which there is no possibility that the meds will work, you will have been put at risk by the medications for no good reason.

It's also worth remembering that Crohn's isn't curable. Even when you have a clear diagnosis of Crohn's, most people do not get complete relief of symptoms. It can be a long process of trying different treatments, dealing with flares and remission, and on-going tests to assess the state of the disease. So it's very important that, as with any chronic illness, you do not put your life on hold any more than necessary. You have to start learning to live with your illness, which involves both living with symptoms and living with continuous hospital appointments and tests. You will get better at coping with chronic illness, but you don't need to wait for a clear diagnosis to start.
06-30-2013, 12:54 AM   #8
PVail
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Hang in there Gabi, this is a step in the right direction . It took me three years to gets thsi and it made them look a little futhere and at least now i am on better treatment .
Peter
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DX March 2012 IBD - Inflammation of the Terminal Ileum with inflammed appendix
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