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Really Need Answers / Info...

For the last 8+ weeks, I feel that I have been going through a Crohn's flare up based on some preliminary fecal and blood results and symptoms, as well as my GI telling me he is 65% sure. Terrible stomach pains and cramping (both left and right side below rib cage), pain when holding my babies (which sucks!!!) or any pressure against my stomach, lower back pain. I have also had a sharp stabbing pain in the center of my back; feels like it comes from the inside out, when this occurs, it itches and when I go to scratch it, its numb.

The GI I am seeing has conducted blood work, fecal test, ultra sound, an endoscopy, a colonoscopy, a lower GI, and a camera capsule endoscopy. All tests revealed borderline Crohn's, but no clear diagnosis. I am scheduled for a double balloon Enteroscopy to take a biopsy of a suspicious area revealed in the camera-capsule test, which so happens to be on the right side below my rib cage where I have pain when press against or any pressure applied to that area.

Since the camera test, my Dr seems to now think it may be celiac disease or a bacterial overgrowth (although he has not ruled out Crohn's). I strongly feel otherwise and believe it's Crohn's (he was 65% sure diagnosis would be Crohn's up until this last test, mainly based on my family history (two cousins on opposite sides with Crohn's) and the fact that I haven't changed my eating patterns and suddenly became sick for the first time in 10 years (I had one other episode like this that was ultimately diagnosed as Pancreatitis, which was caused by a B12 deficiency because my body was not absorbing the vitamin.

My question is, has anyone ultimately been diagnosed with Crohn's after several borderline tests? Are any of the symptoms familiar to anyone else? This process, as all of you know, is quite frustrating, especially since this is the second time in 10 years going though the battery of tests with negative results.

Thanks ahead of time for any help, advice and support, I really appreciate it...
 

nogutsnoglory

Moderator
Many here have been misdiagnosed, told it's in their head or given unclear information. We have an undiagnosed club support forum which is quite active. I personally was pretty clear in terms of them knowing but it's not the case for everyone.
 
H&RsDaddy sorry to hear you are having a tough time. Though I have not faced similar issues as you I wonder if the doc has talked to you about the Promethus test. It is normally used to diagnose in difficult cases but can be expensive. Not all insurance plans cover it either. It was requested for us to do it to decide between UC or Crohns as one more diagnostic tool. Noguts has a good suggestion with the undiagnosed group. I have enough frustration with the flip flop of uc vs cd. It has to be even harder with the non diagnosis. Keep advocating. Sometimes that is all you can do.
 

SarahBear

Moderator
Location
Charleston,
Welcome to the forum!

It's not unusual at all to have several negative test results before finally finding a diagnosis. During these tests, where was the possible Crohn's found (large intestine, small, stomach, etc.)? Were biopsies taken of these areas? If so, have you gotten those results yet? What further testing is to be done to confirm or rule out your doctor's suspicions?

Aside from the itching/numbness in your back, all of your symptoms sound quite familiar and could definitely point to Crohn's. The sensitivity to touch in your abdomen may be what makes your doctor suspect Celiac's, however. Did they not check for Celiac's as well when they did the Prometheus blood test? Do you recall exactly what the results of that test were?

If it helps, I had to go through quite a few tests to finally get my diagnosis as well. Colonoscopy was completely clear, and while my Prometheus test did indicate Crohn's, I was for some reason told it was clear (noticed this little tidbit years later while looking through my medical records). My Crohn's was finally found in my small intestine, via pill cam.

:hug: I hope things get better for you soon!
 
Thank you SarahBear for your reply, I really appreciate it...

I have taken all the tests, for the small intestine, large, stomach...they have done Ultra-sound, endoscopy, colonoscopy, lower GI xray, camera capsule endoscopy...I did take the Prometheus test and everything appeared to be normal. I was told a few levels were high, that may point to Crohn's, but with so much going on, I was overwhelmed and I don't recall which exact level or test the DR was referring to...But Celiac didn't come up until after the Camera Capsule Endoscopy...Next up is a double balloon entroscopy, to get to the area the camera capsule noticed an irregularity (and which the dr thinks might be celiac) but they need to biopsy the area...

What's frustrating is the unknown, and non-treatment...I just wish there was something I could take in the meantime to help with the pain and uncomfortableness, but the dr will not prescribe anything for now...I have been gluten-free for a week and a half, and have not noticed feeling any different...Some days I was actually worse off...Basically been drinking Ensure...

Thanks again, I will keep you posted...
 
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