Crohn's diagnosis missed?

[Dee_1956]

I underwent EDG and colonoscopy two years ago to diagnose digestive tract disorder. Biopsy of the small intestine showed inflammation. I was then set up to undergo the "pill cam" for further investigation. Problem was, this was over three months after my initial tests and the flare up was in remission with no symptoms present at the time I underwent the "pill cam". I was diagnosed with IBS even though one distinguishing factor is that with IBS there isn't any inflammation or blood present.

I feel that a correct diagnosis has yet to be found. I've currently been back into a pretty bad flare up and have no idea what I'm dealing with. Symptoms point to both Crohn's and Celiac sprue although blood tests ruled out gluten as a culprit (or do they?)

My question is whether or not Crohn's can be diagnosed using the "pill cam" when a patient is in remission...or would it only be revealing during a flare. Anyone know? I need to know what is wrong with my gut and the doctors tend to just pass me to each other as though I'm looking for attention.

Thanks for anyone who can help me with this..

[rsr2008]

Your last comment got to me...this is how I feel.  Your symptoms are very similar to mine.  I have yet to do a pill cam or colonoscopy (next to do on the list) but my doctor keeps mentioning I may have Crohns.  All the other tests I have taken turn out normal except I showed inflammation in the small intestines, like you.  My internist mentioned "Familia Mediterranean Fever" and now wants me to see a team of doctors at Stanford as she has no idea what to do for me.  The symtoms are similar to what I have, and possibly you as well.  It is genetic and a blood & DNA test can confirm.  I hope this helps.  Stay in touch.

[lizziecee]

I am so sorry you are both struggling for a diagnosis. I was dx with Crohn's in 1970 - the dark ages - no endoscopy of colonoscopy, at least in England, then so had a laparatomy. Some 15  different sections of Crohn's.

There is a new test, non invasive, in England now, devised by a doctor at Nottingham University - it is a simple stool test - called a Calprotectin Stool Assay test.  I have it regularly to see if I have inflammation in either my small intestine or colon. The norm is 20, mine is often 80, so this gives my gastro the green light to do more invasive testing, like an endoscopy of the small intestine (where I first got Crohn's) or the large colon where I now have Crohn's, called "pan Crohn's colitis".

by the way, Crohn's is not always genetic...but is predominant in Ashkenazi Jewish populations from Eastern Europe. To my knowledge I am not Jewish but there is a question over my maternal grandfather's ethnicity.  My twin brother died of a malignant brain tumour at 50 yrs old, my father of colon cancer at 59 yrs, but neither my parents nor my siblings had/have Crohn's, althought it can, but not necessarily, go through denerations.

rsr2008 - To my knowledge and long experience of some 38 yrs of Crohn's and having seen many gastro's at the best academic centres in England, I don't think you should give such naive comments.   You only have to google Crohn's and find out that a biopsy is the ONLY way go diagnose Crohn's. I am very upset that you can come onto this forum and say a blood or DNA test can confirm Crohn's, when this is absolutely not the case. If you have research to back up your case, please state it, otherwise, take a little time to ponder what you say.

Liz.