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- trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7Positive biopsy
Just one thing I will add that you need to be aware of. If by some chance you had been avoiding gluten or eating less of it than what would be normal for most healthy people, the antibody results for celiac might still be negative. I understand that one of the symptoms of SMA syndrome is difficulty in eating because stuff isn't moving through like it should... -
- RMJ replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7Positive biopsy
Your total IgA is normal. This test is run because if you are deficient in IgA the celiac specific IgA tests might not be valid (might not detect celiac disease). Hopefully some of those other tubes of blood will include other tests for celiac antibodies which might include Tissue transglutaminase (TTG) IgA and IgG, Deamidated gliadin (DGP) IgA and IgG,... -
- pothosqueen replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7Positive biopsy
Hi all. Thank you for the responses. I hope I’m responding right, lots of new things this week. I also thought it was a long shot to get any real responses. Clarifications — the positive biopsy was an accidental finding. I had an endoscopy as a precautionary measure. I was recently diagnosed with SMA syndrome and before surgery they wanted the upper end... -
- RMJ replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7
Positive biopsy
I agree with @trents that the IgA you listed sounds like a total IgA, not celiac-specific, if 114 is normal. Were any other antibody tests run? -
- trents commented on Scott Adams's article in Kids and Celiac Disease2
New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing
The practical takeaway: "For people who care about celiac disease, especially families who have children at higher risk, the findings highlight the importance of self-advocacy." It's the only parameter that the affected individual or their family members have control over. We need to learn to become "politely pushy" in order to get proper testing done when...- age
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Just one thing I will add that you need to be aware of. If by some chance you had been avoiding gluten or eating less of it than what would be normal for most healthy people, the antibody results for celiac might still be negative. I understand that one of the symptoms of SMA syndrome is difficulty in eating because stuff isn't moving through like it should. Valid celiac antibody testing requires the consumption of normal/generous amounts of gluten for weeks/months ahead of the blood draw. -
Your total IgA is normal. This test is run because if you are deficient in IgA the celiac specific IgA tests might not be valid (might not detect celiac disease). Hopefully some of those other tubes of blood will include other tests for celiac antibodies which might include Tissue transglutaminase (TTG) IgA and IgG, Deamidated gliadin (DGP) IgA and IgG, and Endomysial antibody (EMA). They don’t all have to be positive to indicate celiac disease. Please let us know the results when you get them. We will probably then say “welcome to the club you never wanted to join.”
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By pothosqueen · Posted
Hi all. Thank you for the responses. I hope I’m responding right, lots of new things this week. I also thought it was a long shot to get any real responses. Clarifications — the positive biopsy was an accidental finding. I had an endoscopy as a precautionary measure. I was recently diagnosed with SMA syndrome and before surgery they wanted the upper endo to confirm no other problems were hiding. I had the bloodwork drawn after the biopsy came back positive. Celiac came out of left field. The result I have of 114 is for total IgA on scale of 70-400 mg/ml. There is allegedly another pending lab (they took 4 tubes, only IgA has resulted and I cannot see pending tests until tests are confirmed). -
I agree with @trents that the IgA you listed sounds like a total IgA, not celiac-specific, if 114 is normal. Were any other antibody tests run?
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What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis. There is a bit more here: Seronegative coeliac disease
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