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Clear Scope But Still Raised Antibodies


covsooze

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covsooze Enthusiast

Hi all

I'm trying to get to the bottom of the cause of my remainig symptoms, which is difficult as I have other health conditions as well as coeliacs.

My last endoscopy showed that my villi are completely healed, but my antibodies are still slightly raised. I'm obviously getting some tiny amount of cross contamination somewhere but not enough to damage my villi. But given that my body is still producing antibodies, could that mean I'm still feeling the effects of gluten?


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Gemini Experienced
Hi all

I'm trying to get to the bottom of the cause of my remainig symptoms, which is difficult as I have other health conditions as well as coeliacs.

My last endoscopy showed that my villi are completely healed, but my antibodies are still slightly raised. I'm obviously getting some tiny amount of cross contamination somewhere but not enough to damage my villi. But given that my body is still producing antibodies, could that mean I'm still feeling the effects of gluten?

Which specific blood test is showing raised antibodies? Do not assume you are being glutened or cc'd because of elevated antibodies......it depends on which ones are elevated. Other autoimmune diseases may cause an elevated tTg also and if a person has multiple diseases, your antibodies may not come down into the normal range. Is it the tTg or the anti-gliadin test which is spiked?

covsooze Enthusiast
Which specific blood test is showing raised antibodies? Do not assume you are being glutened or cc'd because of elevated antibodies......it depends on which ones are elevated. Other autoimmune diseases may cause an elevated tTg also and if a person has multiple diseases, your antibodies may not come down into the normal range. Is it the tTg or the anti-gliadin test which is spiked?

Hi

Thanks for your reply. It's the tTg that's raised. That was the only one they checked. Isn't that just relevant to coeliacs? I do have autoimmune hypothyroidism as well.

Gemini Experienced
Hi

Thanks for your reply. It's the tTg that's raised. That was the only one they checked. Isn't that just relevant to coeliacs? I do have autoimmune hypothyroidism as well.

Here's how I understand the whole picture, as I've learned from all the reading I have done and what doctor visits have taught me.....I have Celiac, Hashi's thyroid, Sjogrens Syndrome and Reynauds Syndrome. Hashi's thyroid and a few other autoimmune diseases, like autoimmune liver disease, will raise tTg levels also, along with Celiac. This is why other specific tests are done in the Celiac panel to differentiate between what could be causing elevated levels of Ttg. Anti-gliadin IgA and IgG measure your bodies response to gluten, whereas tTg measures damage to tissue.

From my personal opinion only, when a doctor only runs a repeat tTg, they are making a big mistake in not running the anti-gliadin IgA/IgG also because the elevated tTg may be from your thyroid disease and not from gluten sneaking into your diet. If the anti-gliadin numbers are in the normal range, then you are not ingesting gluten (which would explain your clean endoscopy results) and the elevated tTg is most likely coming from your thyroid disease. My personal blood results show a tTg in the high normal range....still normal but I was upset that I could not get my tTg into the low normal range. My anti-gliadin numbers are perfect...low, low normal so I KNOW I am not ingesting gluten. The fact that I have 3 other autoimmune diseases to boot is what the likely culprit is and this was confirmed by a hematologist I saw. She explained that sometimes, even the most diligent Celiacs will still have higher numbers than normal because of all the autoimmune issues I have going on. I have done a good job in taming down my immune system BUT I still have 4 autoimmune diseases so will never be like those in the general population without Celiac disease.

I would highly suggest you tell your doctor to run the anti-gliadin IgA/IgG tests also to see what that says. I would venture to guess you are not ingesting gluten because of your endoscopy results.

That's a guess but it makes the most sense. Don't go crazy trying to figure out if you are ingesting gluten....many make that mistake because their doctors are not running full panels so the whole picture is not seen. Good luck and if you have other questions, ask away! :D

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    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
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    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
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