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Waiting on diagnosis

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#1 Khuenner



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Posted 27 June 2015 - 07:58 AM

Hi everyone,


Background - diagnosed with Lupus SLE in April, then soon after began having severe gastrointestinal problems. Had colonoscopy and upper EGD which showed dilation and dysmotility throughout with bacterial overgrowth. Biopsy and SCL-70 test came back negative. GI still feels strongly it is scleroderma even though tests were negative. Can you have scleroderma with negative antibody test? I have other symptoms like hand issues and Raynaud's as well.


Going back to my rheumatologist to see what she says, but in the meantime thought I would see if anyone else has a confirmed diagnosis of scleroderma with a negative antibody test. Thank you for your time.

#2 Amanda Thorpe

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Posted 27 June 2015 - 01:11 PM

Hello Kheunner


Welcome to the forums and the quick answer to your question is yes. Antibodies are useful in predicting the type of scleroderma, how it might progress and what it might do but they are not sufficient alone to merit a diagnosis of scleroderma or the exclusion of a diagnosis. Don't forget the possibility for the false/positive false/negative test result as well.


Scleroderma should be diagnosed based on symptoms, clinical history, physical exam, any test results with biopsy and blood work providing support for the diagnosis or lack of it. 


Given the complexity of the disease we always recommend seeing a scleroderma expert if you have any questions regarding diagnosis and/or treatment of the disease.


I have had diffuse systemic scleroderma now for 8 years and it wasn't until the end of last year that my ANA became positive although my SCL-70 is still negative. At diagnosis my blood work was perfectly normal.


I hope this helps and keep posting.


Take care.

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#3 Joelf


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Posted 27 June 2015 - 08:11 PM

Hi Kheunner,

Welcome to these forums!

I'm sorry to hear that you've been diagnosed with Lupus and have worries about having Scleroderma.

As Amanda has advised, it is possible to have negative blood tests and yet still develop Scleroderma. Blood tests are by no means conclusive and should really be taken, along with the clinical signs and symptoms, as part of the whole picture in order to reach a diagnosis.

Unfortunately, Scleroderma can overlap with other autoimmune diseases such as Lupus and I've included a link to our medical page on Scleroderma in Overlap to give you some more information, which I hope you'll find helpful.

I'm sorry that I'm not able to alleviate your fears about having Scleroderma and would reiterate Amanda's advice to consult a Scleroderma expert, if possible, as this disease has many little idiosyncrasies which require specialist knowledge and expertise.

Kind regards
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#4 Shelley Ensz

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Posted 28 June 2015 - 10:42 AM

Hi Khuenner,

Welcome to Sclero Forums. I'm sorry you have lupus and concerns about scleroderma

As Amanda and Jo have suggested, I recommend you see a scleroderma expert as not doing so could delay diagnosis for years. It's just so rare that there are very few experts, and it is a tough illness even for experts to identify.
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.