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Is it possible to go undiagnosed based on test results?


Sun, February 12, 2023 9:31 PM

I was diagnosed with RA, Psoriasis, and IBS when I was 17. First came RA, then came Psoriasis then my stomach IBS issue got worse. For years I was given IBS meds and nothing got better.

However I am curious now at 33 and I want to put an end to all these issues, HAS anyone been in my shoes where tests show negative for IBD but once doctor treated you for it with different meds your symptoms went away?

Just so confusing when you have "2" inflammatory issues and the one that bothers you most is your stomach and they claim you do not have IBD. Just doesn't make any sense to me :)

FPO alex101
Joined Feb 12, 2023

Thu, May 11, 2023 5:16 PM

Reply posted for alex101.

Doctors commonly use blood and stool tests as part of your initial diagnostic work-up. Proteins found in blood and stool, also called biomarkers, during blood and stool tests may be useful for detecting inflammation. Although these tests will not reveal what’s causing the inflammation, they may indicate that further testing is needed to identify where the inflammation is coming from. Specific biomarker levels may also be followed over time to help assure that the therapy being used is optimized and that your inflammation is truly controlled.

Blood biomarkers include c-reactive protein (CRP) and erythrocyte

FPO gameofcrohns42
Joined May 11, 2023

Fri, April 28, 2023 3:54 AM

Reply posted for alex101.

Hi there, 

I am sorry to hear this, however, I have a lot of personal experiance when it comes to this scenario.

I am a teenager, I had plenty of GI issues that were always dissmissed as IBS, yet none of the meds helped. I had a normal colonoscopy, Calprotectin etc. I then was diagnosed with Juvenile Idiopathic Arthritis (JIA) and POTS, so the logic was that JIA was causing the GI symptoms. I then had a terrible flare of both JIA and GI symptoms and went of Pentasa (Mesalazine) and Methotrexate/Humira for Arthritis. 

Both Pentasa and Humira had a response on my GI symptoms until I got COIVD. During this flare I also had a Calprotectin level of 77 - not high but over the limit to prompt IBD thinking. Due to this chain of events we have assumed I have IBD, and that we were unlucky with the tests.

As of today, I am having an Insane IBD flare, my doctor also diagnosed me with Proctitis based on Rectal Exam, and there are many other symptoms that MUST be IBD and nothing else. 
 

So conclusion, yep, your story is entirly possible like mine. There is such a strong connection between rheumatic/autoimmune conditions and IBD, and I think when we have multiple other conditions there are perhaps factors like other meds, symptoms etc that could make the IBD diagnosis hidden. It is Super super frustrating but one hopes in the future It will be easier!

Hope you are doing okay. 

Kabir
Online Community Engagement Moderator

FPO kbudlender
Joined Apr 28, 2023

Thu, March 02, 2023 11:22 AM

Reply posted for alex101.

Scientist handling blood samples

Doctors commonly use blood and stool tests as part of your initial diagnostic work-up. Proteins found in blood and stool, also called biomarkers, during blood and stool tests may be useful for detecting inflammation. Although these tests will not reveal what’s causing the inflammation, they may indicate that further testing is needed to identify where the inflammation is coming from. Specific biomarker levels may also be followed over time to help assure that the therapy being used is optimized and that your inflammation is truly controlled.

Blood biomarkers include c-reactive protein (CRP) and erythrocyte

FPO gameofcrohns42
Joined May 11, 2023

Mon, February 27, 2023 8:53 PM

Reply posted for alex101.

That sounds tough, I am sorry you are going through this. I know it often takes many people a long time to get a diagnosis as there is not a one size fits all definitive way to diagnose IBD. I don't know what medications you take for your other conditions, but I know some side effects of biologics that can be prescribed for them have IBD symptoms listed as side effects and that may be an avenue worth exploring. Also if you feel like your doctor is not addressing your concerns about your GI symptoms you can always try to find a different doctor or as for a second opinion. 

FPO aleahmd
Joined Sep 8, 2022

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