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- Wheatwacked replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms9Coeliac or not coeliac
Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives. An elevated level means your immune system is reacting to gluten. Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis o... -
- Wheatwacked commented on Scott Adams's article in Origins of Celiac Disease19
Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)
In Addison’s disease, autoimmmune adrenal cortex disease adrenal glands don't make enough cortisol. At 12, it is usually caused by an autoimmune attack. It has a strong genetic link to the HLA-DQ8 gene. After 12 gluten free and 14 years on prednisone for adrenal insufficiency (symptoms like you describe from 1984 until 2014) I recently removed all c...- antibiotic
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- trents replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms9Coeliac or not coeliac
Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope. -
- cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms9Coeliac or not coeliac
Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal. My TTG score was completely through the roof at the time, greater than 100 which was then the cut...- 1
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- trents replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms9
Coeliac or not coeliac
My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful...
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By Wheatwacked · Posted
Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives. An elevated level means your immune system is reacting to gluten. Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks. You want to create maximum damage. Not a medical opinion, but my vote is yes. -
Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
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Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal. My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab. Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale. I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
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My bad. I should have reread your first post as for some reason I was thinking your TTG was within normal range. While we are talking about celiac antibody blood work, you might not realize that there is not yet an industry standard rating scale in use for those blood tests so just having a raw number with out the reference scale can be less than helpful, especially when the test results are marginal. But a result of 87.4 is probably out of the normal range and into the positive range for any lab's scale. But back to the question of why your endoscopy/biopsy didn't show damage despite significantly positive TTG. Because they took the trouble to take seven samples, it is not likely they missed damage because of it being patchy. The other possibility is that there hasn't been time for the damage to show up. How long have you been experiencing the symptoms you describe in your first post? Having said all that, there are other medical conditions that can cause elevated TTG-IGA values and sometimes they are transient issues. I think it would be wise to ask for another TTG-IGA before the repeat endoscopy to see if it is still high. Knitty kitty's suggestion of getting genetic testing done is also something to think about. About 35% of the general population will have one or both genes that are markers for the potential to develop active celiac disease but only about 1% of the population actually develop celiac disease. So, having a celiac potential gene cannot be used to definitively diagnose celiac disease but it can be realistically used to rule it out if you don't have either of the genes. If your symptoms persist, and all testing is complete and the follow-up endoscopy/biopsy still shows no damage, you should consider trialing a gluten free diet for a few months to see if symptoms improve. If not celiac disease, you could have NCGS (Non Celiac Gluten Sensitivity).
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By knitty kitty · Posted
@CC90, Your Lansoprazole is a proton pump inhibitor and has immunosuppressive effects!!!! This is why your endoscopy didn't show much damage to the intestinal lining!! The Lansolprazole is suppressing tTg IgA antibodies in the intestines, but those antibodies are getting into the blood stream and causing inflammation and damage in other organs. Proton pump inhibitors cause intestinal damage in the long run. If you get off the Lansoprazole for a few months so your immune system is not blocked, then do a gluten challenge, and an endoscopy, THEN they would see intestinal damage. Sheesh! Doctors can be so ignorant. I've seen this so many times it's frustrating! Take the B Complex and Benfotiamine. Get off the Lansoprazole. Go with the DNA test results. Welcome to the tribe! P.S. B vitamins are needed to correct anemia! Not just iron.
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