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TTG lebe 406, Antibody positive but biopsy looks ok?


LouLou24

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LouLou24 Rookie

Awaiting a consultation with my gastro following duodenal biopsies but just looking for thoughts on my situation. TTG in blood is 406, GP told me anything above 20 could be coeliac. Antibody positive. Usual digestive issues also however vitamin/iron etc in blood is good. However I had the endoscopy and they said they could see the Villi in the small gut are in good condition and to remain on normal diet until a follow up. Am I coeliac?? I would have rathered a straight yes or no 😭


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GFinDC Veteran

They will probably give you an answer at the follow up appointment.  Antibodies are one part of a celiac diagnosis but the endoscopy is important also.  Visual endoscopy views are not always dependable.  Some damage is only visible under microscopy.   But my guess is that 9 out 10 times or more positive antibodies are an indicator of celiac disease.  Damage to the gut is not always the same, it can vary widely.  So yours might be minor now but major in a year.

Some people get antibody damage to the skin or joints or nerves versus gut.  So there are other areas that may be affected.  You should keep eating at least some gluten every day until the medical process is complete.  Sometimes labs will lose results or damage samples requiring new test samples.  So it's better to stay on gluten until you are sure they have final answers.  Going off gluten and then  going back on gluten for further testing can be pretty rough.

Scott Adams Grand Master

If you are in the UK, they are not diagnosing celiac disease in most cases by blood tests alone, and your results are sky high. Do you have the full blood test results that you can share? This article may be helpful to you:

 

LouLou24 Rookie
3 hours ago, Scott Adams said:

If you are in the UK, they are not diagnosing celiac disease in most cases by blood tests alone, and your results are sky high. Do you have the full blood test results that you can share? This article may be helpful to you:

 

Thank you so much for your informative reply.

I'm in Ireland, seems we're a step behind the UK in terms of relying on Endoscopy to 'complete' the diagnosis. Its disappointing. Especially given that the endoscopy didn't show anything, it didn't give any supporting evidence to put alongside the blood results. Makes me feel as though this was just an unnecessary, gruelling, costly procedure.

I dont have the full list of bloods, all I remember is TTG was level 406 & antibody positive. Everything else in the full blood count was normal, b12, ferratin, folate etc etc. I guess this is conducive with the villi being stable, meaning my absorption is currently unaffected. 

I expect from your reply that I'll be receiving a coeliac diagnosis in the coming weeks (which could've been done without putting me through an endoscopy:( ) 

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    • ChrisSeth
      Okay thanks Scott. So based on my results will they order more tests to be done? Kind of confused.
    • Scott Adams
      Yes, this sounds right. Let us know when you find out your results.
    • ChrisSeth
      Hi thanks for your response! This is the only other info that’s on my test results for the IgA. The initial testing performed in the Celiac Disease Reflex Panel is the total IgA. If the total IgA is <10 mg/dL, the reflex tests that will be ordered are the Tissue Transglutaminase IgG Antibody and the Deamidated Gliadin Peptide IgG Antibody. If the total IgA is >=10 mg/dL, the reflex test that will be ordered is the Tissue Transglutaminase IgA Antibody. Does that give some insight?  following up with my Dr early next week… thanks again.  And I didn’t eat more gluten than usual during the last 6-8 weeks on purpose. Just a normal diet prior to testing. I had gluten everyday for 6-8 weeks though I’m sure.
    • Scott Adams
      Have you tried sheep's milk and goat's milk cheeses? After my diagnosis I could not tolerate cow's milk for ~2 years until my villi healed, but for some reason I did not have issues with sheep milk or goat milk cheeses.  I also had temporary issues with chicken eggs, but could eat duck eggs.
    • Scott Adams
      This is not a test for celiac disease, but your total IgA levels. This test is usually done with other celiac disease blood tests to make sure the results are accurate. Did they do a tTg-IgA test as well? Were you eating lots of gluten in the 6-8 weeks leading up to your blood tests? 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.    
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