New and undiagnosed

[mtseeg]

Hello:

I'm new to the forum and am trying to make sense of what exactly I have.    Stool tests indicate a gluten sensitivity, as does at least one blood test.   However, I recently took another IBD blood test called, "Anti-Saccharomyces cerevisiae"  (ASCA) and both the IgG and IgA forms came back positive.    According to the results, I either have Crohn's disease or Celiac disease, as both diseases can manifest with a positive result.

Has anyone out there ever taken the ASCA test and did it come back positive for you?   My symptoms so far have been mild:  occasional bloating; very mild abdominal pain and nothing particularly unusual about my bathroom habits.  When the pain does happen, it's sometimes accompanied with burning eyes and mouth (particularly the gums).

And...I love pasta. 

[cyclinglady]

1 hour ago, mtseeg said:

Hello:

I'm new to the forum and am trying to make sense of what exactly I have.    Stool tests indicate a gluten sensitivity, as does at least one blood test.   However, I recently took another IBD blood test called, "Anti-Saccharomyces cerevisiae"  (ASCA) and both the IgG and IgA forms came back positive.    According to the results, I either have Crohn's disease or Celiac disease, as both diseases can manifest with a positive result.

Has anyone out there ever taken the ASCA test and did it come back positive for you?   My symptoms so far have been mild:  occasional bloating; very mild abdominal pain and nothing particularly unusual about my bathroom habits.  When the pain does happen, it's sometimes accompanied with burning eyes and mouth (particularly the gums).

And...I love pasta. 

Welcome!  The test you described helps to diagnose IBD.  There are two forms: Ulcerative Colitis and Crohn's Disease.  The first affects the largel bowel and the second the entire GI tract.  This test does not help diagnose celiac disease to my knowledge.  

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It is possible to have celiac disease and one of the IBD disorders at the same time.  To learn about celiac disease testing:

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Stool testing is controversial for diagnosing celiac disease.  Best to get a blood test and confirm with an endoscopy (biopsies from the small intestine). 

Do not give up pasta yet, until all testing is complete!  ?

[mtseeg]

Hi CyclingLady:

I did some research on the National Institutes of Health website.   There are several clinical studies that indicate celiac patients commonly test positive on the ASCA IBD test.   The title of one such study is, "Antibodies anti-Saccharomyces cerevisiae (ASCA) do not differentiate Crohn's disease from celiac disease."  

Here's the report:

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So, I am holding out hope that I "only" have celiac (something curative through a gluten-free diet) vs. having Crohn's, (awful, devastating disease with no cure, lots of pain, boundless surgeries, etc).

I suppose time will tell.  No one was more surprised than I to get a positive test result.

[cyclinglady]

Thanks for letting me know.  

I do understand your fears...sort of.  My niece is 20 and was recently diagnosed with Crohn's.  I could have sworn it was celiac disease, but she tested negative.  A pill camera actually helped with her diagnosis as her damage was at the far end of her small intestine out of the reach of both scopes.  

I can tell you that she is doing well now.  She is handling her treatments and college.    I also have another friend who has had Crohn's for over 20 years.  She has had one surgery, but her Crohn's has been in remission.  She focuses on eating healthy, excercising, and reducing stress.  She works full time as a Project Manager,  which is is a very stressful job launching new products on time and within budget.  

What is helpful is KNOWING what you are dealing with.  Being in diagnostic limboland is so frustrating.  Hang in there!  

[mtseeg]

Thanks, cyclinglady.   That's encouraging to know that people can have a relatively normal life with Crohn's.   I have a co-worker whose in his 50s with Crohn's.  I understand he's had it most of his life.  Lots of surgeries, iron infusions and ongoing pain.  

My GI appointment isn't for another three weeks.   I had an abdominal CT scan 9 years ago for similar issues and it was clean.   I'm fairly old for Crohn's --I'm in my mid 40s-- and understand that it mostly affects people in their teens and 20s.  But, there are always those outliers.

Given that both my brother and his son have Celiac...I'm hoping(?) for the less destructive disease.