Crohn's Disease Forum » Support Forum » Undiagnosed Club » Undiagnosed and stuck in limbo

06-13-2012, 05:50 PM   #1
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Join Date: Jun 2012
Location: Washington
Undiagnosed and stuck in limbo


My name is Meg and I have been reading this forum for a month or so now. I have found it to be so helpful! I decided I would post because I have been quite sick for almost a year now and would appreciate any ideas or advice, I'm getting rather desperate for a diagnosis.

Okay so it started with terrible right side abdominal pain a year ago. After many trips to the ER and dr they determined that I did not have appendicitis and that I probably had endometriosis due to a crazy amount of family history.

I was referred to a GYN and tried new hormones that seemed to relieve some symptoms and I began eating completely gluten free. I was okay until this past February when things got out of hand and I ended up back in the ER for severe abdominal pain. They checked everything out and confirmed that nothing was going to burst inside of me.

I was then referred to have a lap to diagnose and remove any endo but when I had my surgery they didn't find any endo and simply noted that my colon was "distended".

So as I was getting sicker by the day I was referred to a GI who suspected crohns or colitis and preformed a colonoscopy a few days ago. Everything came back normal including the labs. I also had extensive blood tests done but tested negative and normal for everything except one test that showed that I do have some type of autoimmune disease. Over the past few months I have also been gradually trying out eating gluten again and have found that it really doesn't make a difference in how I feel.

This has been all so frustrating because I am basically living on pain medication, in bed and go to the ER more than anyone would ever want.

I'm still having severe abdominal pain, joint pain especially in my hands, constipation and D and cant eat anything that agrees with my stomach.

I am sorry that this is so long but I would appreciate ANY advice or ideas.

Thanks guys
06-13-2012, 06:15 PM   #2
Senior Member
Join Date: May 2012
Location: Newfoundland and Labrador

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Heh, having a hard go of it are you? I'm in the same boat, no answers, more than enough symptoms. Not quite so bad as you, so you've got one up on me.

Have you had small bowel follow-through, could find something in small bowel disease?

Anything help with constipation/diarreah? Or are you just hopeless?

At least you've got a 'there's something going off in here' in the autoimmune test. Just gotta find what it is.

Best of luck,
06-13-2012, 07:23 PM   #3
StarGirrrrl's Avatar
Join Date: Sep 2010

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Would you be able to see a Rheumatologist who can investigate the auto-immune issue? GI's are only really concerned with the guts, and when things come back normal they scratch their heads. Whereas a Rheumy will look at the bigger picture. Although I don't think one normal colonoscopy is enough, as mentioned the Barium X-Ray and possibly an upper endoscopy.
2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
06-14-2012, 05:39 PM   #4
Join Date: Apr 2012
Location: Pennsylvania

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Which blood test showed an autoimmune issue......was it an ANA titer? I've also had an elevated ANA in my journey towards a diagnosis. Scheduled for a colonoscopy on Tuesday to get a better idea of what's going on. But I certainly second te idea of finding a good rheumatologist!!!
06-16-2012, 08:57 AM   #5
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Join Date: Oct 2010

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Hello Meg, and welcome to our little club here. You have been through quite a journey!

I am also curious about the autoimmune disease shown in your blood. Crohn's does not give you a positive ANA on blood tests, but other inflammatory autoimmune diseases, such as Lupus, do. I spent years trying to find crohn's in my body, and that all changed when I had a positive ANA, which led to my loose MCTD diagnosis.

I hope the colonoscopy shows something! Please keep us posted!
DXed with Behcets disease December 7th, 2012. Behcets disease is a rare autoimmune disease of the blood vessels that can mimic Crohns.

DXed with Polycystic Ovarian Syndrome (PCOS) November 20th, 2017.

Do you love blankets to keep you comfy as much as I do? Fellow spoonies get a 20% discount on my handmade afghans! Contact me for a coupon code!
06-18-2012, 08:52 AM   #6
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Join Date: Mar 2012
Location: United States

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I also have had elevated ANA and inflammatory markers for the last 9 years on and off. I also have had elevated SED rates and C-reactive protein levels on and off as well. I just started having the bad intestinal issues about a year ago. Not sure what is wrong with me. My gastro thinks IBS, but I do not know.
06-25-2012, 05:08 PM   #7
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Location: United Kingdom

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Hi meg I am also new to the forum. U and I have been going through the same things it looks like. I really hope u get some answers so u can keep out of a&e as I know what that feels like. From what I know ibd can take a while to diagnose, why I don't know. Hang on in there and be sure to push for more tests and stay strong.
01-28-2014, 10:41 AM   #8
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Join Date: Jan 2014
Location: york, United Kingdom

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Hi Meg,

Just reading your Post and it sounds identical to my journey at the moment except i havent had the blood test done you speak about.

I too have gotten to thepoint where i have no energy to anything and am in digestive discomfort and pain pretty much all the time. I seem to just want to lie down or sleep. Im terrified to ewat and stay away from anything rich, dairy, lot of veg and gluten which leaves pretty much white meat fish rice and potatoes. mmmm.

Had a colonoscopy last week and it seemed normal although i am awaiting the biopsy results and should have them this week sometime.

I dont mind being ill but it is torture not knowing what the issue is so i totally understand how you feel. It sounds awful but i take some solice in kowing im not the only one in limbo.

I have looked for support groups but without a diagnosis i dont really know where to turn for aadvice and support.
Just have to try and remain positive that eventually i will find out what the issue is and be able to have it treated. It may be a months time, it may be a year but at least i knoiw its not life threatening (in the literal term).

Chin up Meg you are not alone on your journey.


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