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Feeling my worst yet...Behcet or Crohns?

Hi everyone! So I've posted in the undiagnosed club sporadically as I'm not a very frequent poster but I do come to this site to read up on what others are writing. Here is my story. I've basically had on and off symptoms of what feels like Crohn's since 2004, when i was 19. But initially it started with a systemic illness that resembled CFS and stomach issues were not my main concerns at the time. However, as years went by I started experiencing more frequent bouts of burning sensation in Right upper quadrant, right under the rib cage, accompanied with fatigue, mild nausea, and major eye issues which seem to come and go unrelated to my abdominal symptoms. My mom took me to a GI specialist who did an upper endoscopy, which came back normal and left it at that. She was convinced it was all in my head. As years went on I got more tests - CT scans, ultrasounds, upper endoscopies, HiDa scans to rule out gallbladder issues, and more recently a colonoscopy, which showed some non-specific inflammation. All the blood work that I've ever done has always been perfect, even today my CRP and ESR are well into normal levels despite my intensifying intestinal discomfort, so let me talk about my recent, over a year long "flare", if you will.
My latest year long flare started with severe fatigue and some unexpected nausea that I felt for days. I coincidentally started taking medication at the time for an unrelated issue whose side effects would often give people nausea, so I assumed it was all related to that. I stopped taking it and felt like my old self again, for about a week, and then came down with a really bad viral(???) infection, which basically made me feel like crap for months. Im guessing it also reactivated my presumed Crohn's. I am now having mouth sores, severe pain and burning pressure under my ribs, to the point where i cant eat much anymore, constant burning in my mouth and tongue, with my tongue developing strawberry-like appearance, terrible eye issues, constant fatigue, nausea, feeling faint like I'm going to pass out a lot of times, skin problems, hair falling out, severe sweating, overall tingling and burning sensations in my body. This has been lasting since Nov '11 and where typically my flares would be quickly resolved this one feels serious and i feel the situation is getting worse.
So I just came back from my GI today and I asked him for a pill cam test. He kinda laughed it off and said that was the only test I haven't done, and said that its an easy test. I said I beg to differ, I heard the pill can get stuck inside. He assured me that it's very rare and that I don't fit the typical profile of a person who would have a problem with this test. So I haven't scheduled the test yet, but I can't help but worry, given that every time I eat a solid meal now I get pains for hours on end, so if I swallow a pill, who knows what can happen? I definitely don't want to end up with unnecessary surgery but my did seems to have an attitude like it ll be a piece of cake. I definitely will express my concerns to him again before i go in for the procedure, but what do you guys say? Is the likelihood of the pill getting stuck really as low as he claims? I am beyond scared...am worried about how I should proceed but feel that this is a necessary test to do to get to the diagnosis...


P.S. I also asked him about the possibility of Behcet, given that I discussed it with my rheumatologist a couple weeks ago and she seemed open to it. All my autoimmune testing has come back negative for the n th time, so it could very well be assumed that I can also have Behcet, given the burning of my skin, eyes, tongue, my mouth sores, skin eruptions, but I know these could occur in Crohn's as well. My GI seemed to think I'm more likely to have Crohn's given that I am partly Jewish, and it seems to run in our genes.

Is there a test for Behcet? I saw that it is rare but you never know.

I think the pill cam usually gets stuck if you have so much inflammation/scar tissue that it cant get through.

Have you ruled out all the bacteria infections? They have to be tested by themselves Like: D.diff, H. Pylorie?

hope you find out what it is soon
Julie, I had been ruled out for H. Pylori although a while back. I haven't thought abut c. Diff, as I would think you'd get diarrhea and that is the one symptom I haven't been exhibiting. I will double check with my doc, I'm just super concerned that my intestinal damage is that severe. Thanks for your input!
The jewish decendants is so true, come to find out my crohns runs in my father side who are protuguese and have jew in our blood. Its funny because im mix so i never really met a african caribbean thats half portuguese that had jewish blood but its cool just wish the crohns wasnt part of it


Super Moderator
Birka, I see someone else already mentioned Allieinwonder so she should see that she's been tagged in this thread, but in the meantime here is a link to her thread about being diagnosed with Behcet's:


Hopefully Allie can give you more info about Behcet's. I believe Earnellzwifey has also been diagnosed with Behcet's so she should also be able to help you out.
The increased risk is associated primarily with the distinct genetic subgroup of Ashkenazi Jews. The genetic roots are linked to immigrants from the region traditionally associated with the Ashkenazim and specifically the historically insular Jewish groups from that region. That said, it is only one predictive factor and is related to the geoethnicity. Depending on where your relatives came from, they may not be at any higher risk. African and Asian Jewish populations showed no significantly higher risk, and obviously the religion itself isn't related, just the genetic groupings caused by cultural homogeneity, so if your relatives are recent converts this wouldn't apply.
I'm facing possible Behcet's diagnosis as well. How long have you had mouth sores? There's no test for Behcet's though, it's diagnosed based on criteria, kind of like MS. I may have Behcet's with brainstem involvement.

Allieinwonder was dx'd with Behcet's? I missed that! I always thought we had similar symptoms.


Hey! So I am just now seeing this. I feel so terrible for somehow being away from the forum so long. :(

Yes, I am diagnosed with Behcet's. No, there isn't a solid "you have behcets" test, but there are a ton of ways they can test for it, and they diagnose on criteria as well. They can do a skin prick test, where just just prick your arm with a needle and see if a bump shows up. Everytime I hurt my skin I get these bumps, and I had these bumps ALL over my legs when I was diagnosed December of 2012. They are hard to describe. The other test is DNA. There is a certain DNA test that shows you most likely have behcets. They tested my DNA in the German hospital I was diagnosed at, and I have the strand. The other ways they diagnose is through the criteria of symptoms. More than three mouth ulcers in a year, ulcers in your genitals, skin rashes, and certain eye issues. I have EVERY criteria. I was diagnosed by a Germany rheumy. None of my american doctors are even taught what behcets is in medical school...when I go to my american doctors they google my disease, so I always know more than they do. It is kind of insane. o_O

Here is one of the best places about Behcet's online: http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=260549.

Please feel free to PM me or email me if you have more questions! I really wish I had seen this earlier. my email is alisa.erkes@gmail.com.
I have crohn's as does my little brother and my older sister was diagnosed with possibly having bachet's. she is stubborn and in denial and won't really go through with making a follow up. It has been almost a year since she was seen and she hasn't had any symptoms. Though, because she is now pregnant she is being watched.