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test results as of today show Crohns not UC-what!

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Ulcerative Colitis
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Posted 10/15/2008 4:15 PM (GMT 0)
I just got a call from doctor and lab results show that I have Crohns and not UC.Iron def and need iron infusions.Also this week blood work showed that I have Celiac disease as well.I guess I will move over to the Crohns thread and find out what I have to look forward to rolleyes .

Ulcerative colitis since 2003

Celiac Disease Oct.2008

On Colozal for UC 4 caps 2x a day

Found out have Crohns not UC Oct.15 2008

Take probiotics,fish oil,vitamins.

Posted 10/15/2008 4:34 PM (GMT 0)
oh sorry to hear that, prob just got your head around the uc does and dont's aswell....I still havent. take care!
Posted 10/15/2008 4:52 PM (GMT 0)
Are these lab results from a biopsy, or blood test?
Posted 10/15/2008 5:09 PM (GMT 0)
sorry to hear that, i bet u have finally just got your head around the does and dont's of uc aswell and now u have to start reading up on crohns. arrghhh.. well good luck with it all.
Posted 10/15/2008 5:35 PM (GMT 0)
Hi,

That is overwhelming information to absorb.  Do you know which test your doctor gave you to decide a CD diagnosis? Was it the Prometheus Blood Test?  If it was the Prometheus test, I would encourage you to do some personal research about the validity of that test so that you are fully in the know.

On our blog below we have a link to the Promtheus thread that was on jpouch.org and also there is an EXCELLENT webcast from Health Talk on "avoiding the wrong diagnosis" - it is helpful to listen to it since many people often experience diagnosis changes.

http://ucstory.wordpress.com/2008/07/26/avoid-wrong-diagnosis/

Wishing you well,

Megan

Posted 10/15/2008 6:14 PM (GMT 0)
Hi...totally sucks regarding your diagnosis. I know you'll have great support from the CD forum, and definitely seek a Celiac forum as well.

Do pop in from time to time since you do have Crohn's colitis....you might just have information/experience some may seeking.

Best to you,
quincy
Posted 10/15/2008 7:26 PM (GMT 0)
Once the celiac is under control hopefully many of the symptoms associated with it should improve quite a bit : )
Posted 10/15/2008 7:27 PM (GMT 0)
Judilyn,these results were from biopsies that were sent to California.They did blood work as well here at my hospital.Found out today that I don't have celiacs,which they determined from blood work.I got all of this news today and go to doctor in two weeks to hopefully make more since of it all!
Posted 10/15/2008 7:36 PM (GMT 0)
Megan,Yes it was the promethius test.5 years ago when i was diagnosed with UC,they called me back to hospital to run more tests because even at that time they thought it looked like crohns because of where it was located,but those test came back looking more like UC than crohns.They thought maybe I had both!?But then decided it was UC and that is what I was treated for.Now according to this promethius test it is crohns---Im so confused and tired of it all!! I will for sure check out that web site you told me about.Thanks a bunch! Like someone else said in another thread-they can send a man to the moon,but can't figure this intestinal stuff out-go figure!
Posted 10/15/2008 7:38 PM (GMT 0)
cooper67 :)

I'm sorry for your misDX...I have crohn's colitis which is crohn's affecting the colon, rest assured the same meds used to treat UC are also used to treat crohn's colitis as well...the major differences between UC and CD is that CD can affect the entire GI tract from mouth to anus and that the inflammation with CD can affect the many layer of the intestinal lining whereas with UC it affects the surface only. The same extraintestinal manifestations that occur in UC are the same as with CD.

I'm glad you don't have Celiacs as well...if you have any Q's feel free to ask and I'll help as best I can.

:)
Posted 10/16/2008 4:24 AM (GMT 0)
cooper, glad to hear it was a neg for the celiac. Wondering if maybe you still have a mild form of glucose intolerance..? that could be the reason for your reading..

q
Posted 10/16/2008 4:31 AM (GMT 0)
Hi cooper,

I just wanted to extend my sympathies and let you know that you're very welcome on the Crohn's forum, whenever you feel ready to come over.

I really am sorry. This must be so frustrating for you.

*hug*

Ivy.
Posted 10/16/2008 5:22 AM (GMT 0)
Cooper, I'm sorry to hear that. The Promethius test is really unreliable, but biopsies are usually conclusive. As others have said, even though the diagnosis was wrong, the treatment was still appropriate because UC and Crohn's colitis are treated in very similar ways.

Regardless of your diagnosis, I hope you're soon in remission and feeling better.
Posted 10/16/2008 8:55 PM (GMT 0)
Quincy,iam cutting out gluten littlte by little.from what i here everyone feels alot better when they do.thanks for asking
Posted 10/16/2008 9:29 PM (GMT 0)

Judilyn said...
Cooper, I'm sorry to hear that. The Promethius test is really unreliable, but biopsies are usually conclusive. As others have said, even though the diagnosis was wrong, the treatment was still appropriate because UC and Crohn's colitis are treated in very similar ways.

Regardless of your diagnosis, I hope you're soon in remission and feeling better.

This is what I don't understand.... I had biopsies done but my doctor said it showed IBD, and Crohns/Colitis. He is not sure which one yet, but thinks it is UC. What should the biopsies have showed him for him to know for sure which one it is?
Posted 10/17/2008 12:15 AM (GMT 0)
Hey Cooper,

Yes, do learn ALL you can about the validity of the Promtheus test before you let the CD diagnosis turn your world upside down.  It will be one of the most important pieces of info you can decide for yourself. I know with Mark we went to 4 doctors to verify his Promtheus test diagnosis of non-UC but CD. And ironically 2 doctors said the test was valid, two said the test was not valid. 

If you want some more info on it, you may want to search on www.jpouch.org for info since a lot of people with UC prior to surgery often have the test. Also, Jan Dollar posts frequently on jpouch.org and she has a good medical background and could inform you about the history of the test, etc...

Megan

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