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- pothosqueen replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Positive 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 & Symptoms5Positive 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 Disease2New 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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- Russ H replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Positive biopsy
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... -
- Scott Adams replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms5Positive biopsy
If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each...
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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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By Scott Adams · Posted
If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. -
Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
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