Could this be crohn's? Is there more testing I should try getting?

Long story short:
about ten years ago I started getting constipation with bloating and abdominal pain. Was pretty much tested with all the tests; blood tests, allergy, x rays, mri, ultrasound, colonoscopy, endoscopy. Everything came back negative. Never had bleeding or fever.

For eight years, I continued on with abdominal bloating or distension which is there pretty much all the time from the time I wake up till when I go to sleep. After eating its worse, but it's pretty much always there with varying degrees. Continued on with varying levels of constipation from mild or none to more. Pain in the abdominal area. All in all, pretty much hell.

Recently, I felt it got worse. The bloating and pain got worse. I felt the bloating was spreading to higher up in my abdomen, and lasting for much longer. Its under my ribs also, which has kept me up at night. Never in eight years did the bloating and pain keep me up, even though I have had plenty of pain. I also started getting lots of burping, which I didn't have in eight years of ibs. I decided to go to both my primary care doctor and gastro. I had a hydrogen methane glucose breath test which came back negative. I had blood tests which were all normal besides for b12 which was a bit low. Something like 265. Then I got a ct scan which showed swollen lymph nodes in my small intestines. Went for colonoscopy and endoscopy which both came back negative.

(A side note. Lately, my bones have been cracking/popping all over. Not sure if this is connected in anyway.)

So my question is: Can this still be crohns which wasn't detected in my small intestines since the scopes cant reach most of the small intestines.
On one hand: I have no bleeding, or diarrhea. However, some inflammation was spotted on ct scan. I also have a bit low b12. And my symptoms don't seem to be regular IBS.

What do you think? Is it worth getting the pill cam test? Are there other tests that I could be missing that could possibly pick up on this?

73monte said...
It sounds doubtful that it's Crohn's. If they did biopsies with your scopes, then very doubtful. You could still have an MRE, (an MRI of the intestinal tract), or a small bowel follow thru. The latter gets a clear look at the terminal ilium, which is the classic, most common area affected by Crohn's.

Still could be many other things. Perhaps a gluten sensitivity test, or food allergy testing may bring some answers.

I've read of many times crohn's being missed do to it being in a part of the small intestine that cant be reached by the scopes?

I got the blood tests for allergies and celiac. Both came back negative. Waiting for the celiac biopsy results from the endoscopy. They should be ready within a week.

They do have a pill cam that can see into the small intestine area. The thing about allergy testing is that it's limited to the most common allergy-inducing foods. If you're allergic to something not tested, you would have to do an elimination trial of the foods you eat.

This is just another thought from my own experience - did they check your gallbladder? I had similar symptoms when my gallbladder got full of stones. I have an aunt who went for many years with gallstone attacks - I think she was afraid of surgery to go on suffering that long, knowing what it was. I would think they would have already checked that, though.

I've always had negative scopes and cts and mris, even the last one, I had 3 weeks ago, looked very clean. However, the biopsy showed I had activity in my terminal ileum and beginning of colon. Did they take a biopsy?
Still my tests were positive and I used to have very high fever 9 years ago.
My GI used to suspect Crohn's for 8 years until I developed a perianal fistula this year.
Could you ask your GI about enteroscope or push endoscopy? I had it many years ago and it went through my intestines and so they managed to visualize my whole GI tract from the mouth to the anus. They could also take biopsies.