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Not exactly Crohn's? Please read and help.

Hi there,

I have been told by a several doctors that they cannot diagnose me with a form of IBD at this time.

I was wondering if anyone had a similar experience to mine:

-I was diagnosed with celiac disease 4 years ago, so I have an established GI
-last month i started getting bad abdominal pain and diarrhea, and went to the doctor right away
-doctors ran every test under the sun on me. the only one that came back abnormal was the fecal calprotectin (elevated)
-last week i had an endoscopy/colonoscopy and the only finding was inflammation in my ileum. Biopsies revealed granulomas.
-MRI didn't show evidence of Crohn's

Doctors keep asking me if I have any family history of IBD/Crohn's/colitis.
My stomach still really hurts but no one will tell me what I have. I think they genuinely don't know.

My father thinks perhaps I'm in the very early stages of Crohn's?

I'm extremely frustrated, so any input that anyone has would be greatly appreciated.

Thanks!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi Maya, you'll find several on here who are presently or have been in your shoes. Cat-a tonic has been going through an eerily similar experience to yours. Read her posts for now and others will comment on your story soon enough. Good luck.
 
I had the same problem. However mine was due to the fact they couldnt get a biopsy in my illeum because the stricture was so severe. So for two years the doctor treated me for chrons assuming i had crohns got my final diagnosis a couple of weeks ago the did an illeocecal resection and was able to test the bowl. I would say assume you have it and get the treatment better to be safe than sorry.
 

Cat-a-Tonic

Super Moderator
Hi Maya, welcome to the forum. As Mark said, I'm in a similar situation to yours - I probably have Crohn's based on my symptoms, but every test I've had has come back "normal" so far (blood tests, colonoscopy, biopsies of colon & terminal ileum) so I don't yet have a proper diagnosis either. I'm having a CT scan next week to try to get myself figured out. In the meantime, I had a flare recently and they decided to try me on both IBS meds and Prednisone to see if either worked (I tried them separately, not at the same time). The IBS med did nothing but the Pred is working, which would indicate that I do likely have something autoimmune like Crohn's. Has your doctor tried any medications on you to see what works? By the way, if it makes you feel any better, I don't have a family history of IBD either (unless you count my great-grandfather who had Ulcerative Colitis).

Hang in there, sometimes these things are frustratingly difficult to diagnose and I definitely feel your pain! You've just got to try to keep being optimistic that eventually they'll figure it out (if your docs can't figure it out and are running out of ideas, maybe you should try seeing a different doctor). The road to diagnosis can be long and incredibly frustrating, but I know it has an end. I've been ill for 8 months now with few answers, and from anecdotal evidence based on reading the stories on this forum, I'd wager that the average time frame from onset of disease until diagnosis is probably about a year. I don't mean to say that to depress you, I just want you to know that you're not alone in feeling frustrated and in wondering how long it's going to be before you have answers (and sometimes wondering if the doctors even know what they're doing!). I think most of us on here have had to wait for months and sometimes even years before a diagnosis. Good luck and I hope you do get a diagnosis soon. In the meantime, this forum is a great place to ask questions or just vent. :)
 
Oh wow, I guess I never really thought about how long a diagnosis takes. Here I am after 3 weeks, and I'm so frustrated. Come to think of it, it took 2 years of pain for me to be diagnosed with celiac because every doctor assumed I had acid reflux from stress.

Thanks for putting stuff in perspective, everyone! I am glad to have this forum and kind people as a resource.
 
Hang in there I'm in the same boat I'm on my second flare up but yet to be diagnosed its been 7 months of tests and such but I feel I am close to a diagnosis after talking to a new go doctor
 

DustyKat

Super Moderator
Hi Maya and :welcome:

Sorry I don't have any advice but I would like to wish you luck and hope you get answers soon

Take care,
Dusty
 

Crohn's 35

Inactive Account
Hi Maya, welcome to the forum!!!! Lots of information in the forum. Even tho some tests show negative results but an inflammed ileum is usually signs of CD or UC. Not everyone bleeds and most docs seem to think it should be present. IBS is a condition not a disease, celiacs can have IBS symptoms but not usually inflammation unless you are not watching your diet. Most rule out if they are eating gluten and wheat free and you are still having symptoms of pain, bloat , d, is a sign of disease. So many people do take a long time for a diagnosis. It is really a hit or miss and a game of hide and seek where the disease will show itself. Even biopsies can be missed if it is not in the exact spot, I know been there done that.

Hope this helps you...we are not doctors but we sure know how you feel! Hope you join our community , great bunch of people here!!
 
Hi Maya,
If you are still in pain I would keep pursuing it. It is your bodies way of telling you something is wrong. If you look up Granulomas, it is quite possible it is from Crohn's. I dont know, I have read so many stories on here that the doctors didnt know to only find something later. The doctors job is to find out what is wrong however long that takes. For me, I had to wait a year and half to see a GI and then a few months for tests. My next appointment was scheduled last feb for March 2011 (but I can call in between).
Hope you get some answers.

Wendy
 

Astra

Moderator
Hi Maya
and welcome

sorry you're going thro this, it's very frustrating! My GP wouldn't refer me many moons ago, and when I did get referred I got my dx, but it took 15 years!! sorry, not scaring you! but things are so different now, so hang on in there, cos it sounds like Crohns to me, you just need to find a doc that will confirm it and put you on appropriate meds. just keep screaming for it!
glad you found us, lots of friends here and support
lotsa luv
Joan xxx
 
After reading a lot of the other posts on this forum, I can't imagine living like this for another month, let alone years before a diagnosis. That is exactly what happened to me before I got diagnosed with celiac, and I'll be darned if I let it happen to me again!

I guess I was lucky (if you can call it that) to already have an established GI because I have celiac. And, of course, a mother who will call the doctor's office all the time to try to find help for me :D

It can't be my celiac getting worse, because my endoscopy looked great -my gastric antrum and duodenum, which looked bad in my last scope, are healed.

Over the last week, my pain has gotten more severe and sometimes I can localize it to the right lower quadrant or up under my ribs. Recently I've had bad pain in my rectum and now I have a sore developing on my tongue. To me, these seem to further indicate Crohn's.

I do have an appointment with a new GI (up where I go to college, instead of my regular ones back home) tomorrow afternoon. Hopefully a second opinion will help.

I've been keeping track of all my symptoms and everything I eat. Is it a good idea to print all of it out and take it with me? Also should I ask to see a nutritionist or dietician or something? I've been considering trying either SCD or an elimination diet to see if my symptoms will subside.

Again, thanks so much to all of you!


Edit: Is it also worth discussing the fact that I got off of 5 months of Accutane at the end of January? I mentioned it to my doc back home but she brushed it off like it makes no difference.
 
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Astra

Moderator
Hiya Maya

there is a thread about Accutane/Crohns, just type it in the box called search on the blue line above
xxx
 
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