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TTG lebe 406, Antibody positive but biopsy looks ok?

LouLou24
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LouLou24 Rookie
LouLou24
Posted

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
GFinDC
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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
Scott Adams
Posted

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
LouLou24
Posted
  • Author
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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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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    • Jane02
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      Contact them.
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