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Living with Crohn's, but not diagnosed with it.


Fri, May 25, 2012 8:39 PM

Hi there! I am new to the community and was wondering if there was anyone out there that has a parent or sibling that has been diagnosed, but does not have Crohn's themselves.  My mom was diagnosed in 1978, when I was 3 years old and my sister was diagnosed in 2009.  I DO NOT have Crohn's, but I feel like I have had it all my life.

I look forward to hearing from people out there like me.  

FPO crohnscaregiver
Joined May 25, 2012

Mon, May 28, 2012 8:23 PM

 Reply posted for Lizzies Mom.

I have not actually had any symptoms, except when my gallbladder is acting up.  I have asked several different docs if I should be tested to see if I carry the genes, but they have advised me not to have the test 1) it is expensive and 2) if I have the test done, it can be considered "preexisiting" or make me high risk for health insurance later.
Thank you for the reply.  It makes me feel better that there are others out there that feel like I do.

FPO crohnscaregiver
Joined May 25, 2012

Mon, May 28, 2012 8:17 AM

I think your situation is more common than you think.  It wasn't until my daughter was diagnosed when she was 4 that the pieces of the puzzle started to fall into place.   My grandmother was never diagnosed, but had suffered many of what I now know are symptoms for years.  Her mother died at a very early age (never diagnosed), but refused to be hospitalized and died of a rupture  -leaving six young children motherless.  I had been sick on-off as a child, gone through a time of a  25  lb. weight loss, was misdiagnosed w/anorexia!!    It was only after all of this family investigating and my own daughter's diagnosis that I was diagnosed too.   

My advice to you is to make some dietary changes if you are feeling symptomatic and live your life w/o the label, with the assumption of the IBD possibility.  

FPO lizzies mom
Joined Sep 9, 2009

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