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- Sicilygirl posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0fed up italian
I am looking for words of encouragement because I have just had enough with this celiac diagnosis. I recently got diagnosed in October this year and its been hell let me tell you. Fist of all my doctor did not want to do the test saying that I was not Celiac because I did not have blood in my stool. Really??? I thankfully insisted that he do the blood work... -
- trents replied to Jtestani's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7Help with results please. As I have a appt after the New Year.
JettaGirl, there are a number of serum antibody tests that can be ordered when diagnosing celiac disease. Unfortunately, most physicians will only order one or two. So, a negative on those one or two may or may not add up to seronegative celiac disease since had a "full celiac antibody panel" been ordered you may have thrown some positives. False negatives... -
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- JettaGirl replied to Jtestani's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7Help with results please. As I have a appt after the New Year.
Thank you! It was never explained to me why it didn’t show up in the labs. This makes so much more sense to me now. The endoscopy test was very easy though. I was worried about my first one and have had 2 since. I don’t think I was able to eat after midnight because of anesthesia, the procedure itself took 20 minutes. I did need a driver to get me home aft... -
- trents replied to Jtestani's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms7
Help with results please. As I have a appt after the New Year.
You are confusing two different things. You are confusing seronegative celiac disease, in which all celiac antibody tests will be negative despite a positive biopsy, with mixed positive and negative antibody tests. It is normal for someone with celiac disease to not have all antibody tests throw positives. That's why they have developed different antibody...
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0December 11, 2024 12:00 AM
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Posts
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By Sicilygirl · Posted
I am looking for words of encouragement because I have just had enough with this celiac diagnosis. I recently got diagnosed in October this year and its been hell let me tell you. Fist of all my doctor did not want to do the test saying that I was not Celiac because I did not have blood in my stool. Really??? I thankfully insisted that he do the blood work test just to make sure., since I was sick while in italy after eating both pasta and pizza and I knew something was wrong. I exhibited all the signs of gluten sensitivity, bloating and bad stomach pain which I never had ever after eating gluten. After a week of waiting patiently for the test result it showed positive. I was both happy and floored at the same time. It has been an emotional roller coaster. Having to now work hard to read labels constantly making sure they don't add gluten EVERYWHERE!! buying some comfort expensive gluten free foods to somehow make me feel like I am a normal person again. Hiring a dietician to put me on a diet to get my nutrients needed and to fix my villi that is destroyed. I feel sad, angry, depressed and why me?? is it an italian thing? I do not know. Anyways any feedback would be helpful. I am still extremely tired and have bowel symptoms and brain fog when do these go away? -
JettaGirl, there are a number of serum antibody tests that can be ordered when diagnosing celiac disease. Unfortunately, most physicians will only order one or two. So, a negative on those one or two may or may not add up to seronegative celiac disease since had a "full celiac antibody panel" been ordered you may have thrown some positives. False negatives in the IGA antibody tests can also be caused by low total IGA count. So, a "total IGA" test should always be ordered along with the single most popular test, the tTG-IGA. Unfortunately, many physicians only order the tTG-IGA. And then there are other tests that are IGG based. A full celiac panel will include both the IGA tests and the IGG tests. Here is a primer: And here's another article on seronegative celiac disease: https://pmc.ncbi.nlm.nih.gov/articles/PMC4586545/
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Thank you! It was never explained to me why it didn’t show up in the labs. This makes so much more sense to me now. The endoscopy test was very easy though. I was worried about my first one and have had 2 since. I don’t think I was able to eat after midnight because of anesthesia, the procedure itself took 20 minutes. I did need a driver to get me home after just where I was put under anesthesia for the procedure.
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You are confusing two different things. You are confusing seronegative celiac disease, in which all celiac antibody tests will be negative despite a positive biopsy, with mixed positive and negative antibody tests. It is normal for someone with celiac disease to not have all antibody tests throw positives. That's why they have developed different antibody tests. What one misses, another may catch. It is the same way when diagnosing many other medical conditions. Usually, not all diagnostic tests for that condition will be positive. You have to look at the total body of evidence.
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By Celiac comments · Posted
I had 2 blood tests at the same time. One negative, one positive. No insurance coverage for endoscopy but felt MUCH MUCH better after three days gluten-free and many hair, skin, and rash issues cleared or improved in a week. It seems there are lots of false negatives in Celiac blood tests.
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