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Positive celiacs blood test negative biopsies

Lyns5201
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Lyns5201 Collaborator
Lyns5201
Posted

Hello all,I was really looking for some advice and help here..my blood test for celiacs was positive(I should note I also have hashimotos)..I got a endoscopy biopsy done that showed no blunting to my villi.. they also found inflammation in stomach biopsies and have run multiple tests to try to identify the cause of this and all of them are negative.. went off gluten a month.. felt better in some ways.Got back on gluten for a month to repeat my endoscopy and biopsies again to try to confirm celiacs... still no visible damage could be seen during scope B anywhere.. waiting on biopsy results.. also worth noting when I’m gluten free my bilirubin is normal.. when I eat gluten it becomes elevated.. also when I’m on gluten I have horrible ibs, been off gluten five days now and already have had no more diarrhea or ibs symptoms... my question is could I still have celiacs with negative biopsies?i have attached my celiac blood test.

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Lyns5201 Collaborator
Lyns5201
Posted
  • Author
3 minutes ago, Lyns5201 said:

Hello all,I was really looking for some advice and help here..my blood test for celiacs was positive(I should note I also have hashimotos)..I got a endoscopy biopsy done that showed no blunting to my villi.. they also found inflammation in stomach biopsies and have run multiple tests to try to identify the cause of this and all of them are negative.. went off gluten a month.. felt better in some ways.Got back on gluten for a month to repeat my endoscopy and biopsies again to try to confirm celiacs... still no visible damage could be seen during scope B anywhere.. waiting on biopsy results.. also worth noting when I’m gluten free my bilirubin is normal.. when I eat gluten it becomes elevated.. also when I’m on gluten I have horrible ibs, been off gluten five days now and already have had no more diarrhea or ibs symptoms... my question is could I still have celiacs with negative biopsies?i have attached my celiac blood test.

It won’t let me post the picture of my test but my tTG igA test was at a 27, it said on the test they ran anything above a 3 is considered positive and anything above 10 a strong positive.

Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! You can diagnose celiac disease without a positive biopsy, and in Europe they are doing this when a test like the one you took is 10x normal. Given that your tTG igA result was 27, and anything above 3 is positive, you more or less fall into that category. Also, thyroid issues are very common in those with celiac disease, and you can read more about this here:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/thyroid-pancreatic-disorders-and-celiac-disease/

Lyns5201 Collaborator
Lyns5201
Posted
  • Author
2 hours ago, Scott Adams said:

Welcome to the forum! You can diagnose celiac disease without a positive biopsy, and in Europe they are doing this when a test like the one you took is 10x normal. Given that your tTG igA result was 27, and anything above 3 is positive, you more or less fall into that category. Also, thyroid issues are very common in those with celiac disease, and you can read more about this here:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/thyroid-pancreatic-disorders-and-celiac-disease/

Aww ok thankyou so much for the info Scott! 😌I’ll be glad to finally have a diagnoses even if it is celiacs I just want to feel better and if that means dropping gluten I’ll be glad to do so! 

trents Grand Master
trents
Posted
5 hours ago, Lyns5201 said:

It won’t let me post the picture of my test but my tTG igA test was at a 27, it said on the test they ran anything above a 3 is considered positive and anything above 10 a strong positive.

Sometimes villi blunting can be very patchy and depending on where the samples for the biopsy were taken, the damaged areas could have been missed. The tTG-IGA is considered to be very specific for celiac disease. There are other antibody tests for celiac disease can be done that are less specific but more sensitive. So, when the tTG-IGA is clearly positive it's pretty conclusive that you have celiac disease.

Lyns5201 Collaborator
Lyns5201
Posted
  • Author
3 hours ago, trents said:

Sometimes villi blunting can be very patchy and depending on where the samples for the biopsy were taken, the damaged areas could have been missed. The tTG-IGA is considered to be very specific for celiac disease. There are other antibody tests for celiac disease can be done that are less specific but more sensitive. So, when the tTG-IGA is clearly positive it's pretty conclusive that you have celiac disease.

Thankyou for the info trents, I really appreciate any advice here.. it’s been so confusing, my doctor told me that it could be picking up my thyroid antibodies or that I can just have elevated antibodies to gluten for no reason..I have a hard time believing this as I’ve herd once the antibodies reach a certain point it almost guarantee damage is being done.. also as going gluten free has even cleared up some of my horrible symptoms right away! 

trents Grand Master
trents
Posted
6 hours ago, Lyns5201 said:

Thankyou for the info trents, I really appreciate any advice here.. it’s been so confusing, my doctor told me that it could be picking up my thyroid antibodies or that I can just have elevated antibodies to gluten for no reason..I have a hard time believing this as I’ve herd once the antibodies reach a certain point it almost guarantee damage is being done.. also as going gluten free has even cleared up some of my horrible symptoms right away! 

The proof is in the pudding, isn't it!

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