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Lupus Or Mctd Or Microscopic Colitis


isasmommy

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isasmommy Newbie

Hello everyone, I'm new to the forum and want some input of people that have gone through the testing previously.

I was diagnosed with Celiac two years ago and have been following the gluten-free diet. Over the last year, symptoms have gotten worse: more cramping, extreme fatigue, joint pain, and had been hospitalized with inflamed colon. Had subsequent endoscope/colonoscopy again and had found inflammation in my colon suggestive of colitis. They diagnosed me with microscopic colitis on top of the celiac. So I have been on Entocort for 2 weeks. I had also been referred to Rheumatology after a positive ANA (1:320) because of the joint pain and fatigue that did not seem to go away even when the vitamin D level in my serum increased (initially 10 then went to 30's).

I recently got some test results back for ENA (positive for dsDNA ab, anti-RNP ab, anti-SSA (Ro) ab, anti-cardiolipin ab (both IgG + IgM). The nurse called and said they wanted to schedule an appointment to discuss the test because the doctor believes I have another autoimmune condition and wants to sit down and talk to me. This got me thinking and worried that they think it is Lupus. I have a family history on both sides of autoimmune (crohn's, ulcerative colitis, hypothyroid, RA, lupus--> no body has celiac except me). I am thinking that they will say Lupus and want to get some feedback on others that have gone through this also.

I read the previous post asking about lupus, and read the comments regarding letting my body wait a while after the celiac diagnosis. However, I have been gluten-free for 2 years and now the symptoms are getting worse, I have never felt so tired in my life without wanting to do anything. I used to be a really positive thinker and with lots of energy and now I have turned into a person that is the person that is too tired to do anything and unmotivated. I know the ANA can be false positive for other autoimmune or it can be just normal in people but I tested positive for a bunch of the other antibodies associated with Lupus.

I have looked up all these tests and know what they are testing. I guess what I am looking for is some feedback from anyone that has both Lupus + celiac or the other two (MCTD, microscopic colitis). How did they come to the diagnosis and did it get diagnosed after your celiac?

Thanks!


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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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    • Churley
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