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Crohn's Disease Forum » General IBD Discussion » Still very much in denial


10-11-2013, 05:32 PM   #1
millerkat1
 
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Still very much in denial

Ive had 10 scopes in the past 1.5 years and numerous biopsies. How can I have Crohns if none of my biopsies showed it. The only thing that did was the IBD sgi blood test
10-11-2013, 06:42 PM   #2
nogutsnoglory
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Have you been diagnosed with Crohn's? What does your doctor say is a possible explanation for this?
10-11-2013, 06:53 PM   #3
millerkat1
 
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Yes,i was diagnosed with Crohns on the 28th of August because of the blood test
10-11-2013, 07:28 PM   #4
nogutsnoglory
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I'm not familiar with the blood tests that are used as IBD diagnostics. I am not sure how accurate they are but you can certainly get a second opinion if you think your diagnosis doesn't match your symptoms.
10-11-2013, 07:46 PM   #5
millerkat1
 
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http://www.prometheuslabs.com/Resour...uct-Detail.pdf
10-11-2013, 09:56 PM   #6
SarahBear
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A diagnosis should not be made on a Prometheus test alone. The results aren't completely accurate - although incorrect results are generally false negatives rather than positives.

Have you had a capsule endoscopy or MRI to see your small intestine, or an endoscopy to check your throat and stomach? It's possible you could have Crohn's active in these areas. If so, biopsies taken from the colon wouldn't indicate Crohn's.

What are your symptoms?
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10-12-2013, 08:25 AM   #7
nogutsnoglory
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I am aware of Prometheus. I never assessed it much because my crohn's is blatantly clear. From what I know, like Sarah said they are not entirely accurate.

I think for less than clear cut cases a diagnosis is best come to from a range of tests such as colonoscopy or imaging tests, biopsies and blood work looking at ESR, CRP and a stool
Sample called fecal calprotectin. Elevated inflammation from these tests are not necessarily crohn's related but they are useful in pinpointing the problem.

Positive signs of crohn's there along with Prometheus would be a good indication.
10-12-2013, 08:45 AM   #8
millerkat1
 
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Ive had colonoscopies EGDs pill camera, mri ect
10-14-2013, 07:55 AM   #9
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Do you have ongoing crohn's symptoms? Have you been on meds and if so have they helped?
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10-14-2013, 01:22 PM   #10
CrohnsChicago
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Hi millerkat1,

I just finished reading your earlier posts where you indicate symptoms such as vomiting blood, frequent bowel movements, passing blood in stool, unhealing ulcers in the upper portion of your digestive tract...all before the prometheus blood test.

It is very common to have crohn's in any part of your digestive tract from your mouth to your anus so having a clear colonoscopy could just mean that that portion of your body is symptom-free as far as major crohn's symptoms go. Passing blood in stool could also be a sign of bleeding higher up in the digestive tract. IBS + Crohn's is also a possibility.

What are all of the places in your body that your doctor is suggesting could be the source of your crohn's symptoms? I understand you are considering delaying treatment until delivery as well.

I'm very sorry you have had to deal with all of this and I'm sure it isn't easy as you are currently pregnant

Crohn's is a very hard thing to come to terms with at first, it often takes a lot of trial and error in treatment plans before you begin to feel relief. Add a baby to the situation and it makes things a bit more tricky to manage I'm sure.

I really do hope you can your doctor can find treatment that will allow you to able to achieve remission. If you still feel uncomfortable with your doctor's diagnosis it is always OK to get a second opinion on the matter. I would personally suggest you do so if you are pregnant to make sure that you and the baby are being well taken care of.

Wishing you all the best.
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10-14-2013, 07:56 PM   #11
millerkat1
 
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Hes suggesting that i have crohns in my stomach. I had a 2nd opinion with mayo climic they never even once suggested crohns
10-14-2013, 08:41 PM   #12
Dukeis
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10 scopes in a year and a half? What kind of doctor would do that to anyone? I think I would go with what Mayo Clinic tells you.

Like Sarah said those Prometheus test are not that reliable.
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10-15-2013, 07:33 AM   #13
millerkat1
 
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My dr scopes me everytime i throw up blood. Mayo didntvreally have a diagnosis except possible gastrinoma but my gastrin level went back to normal
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