Confused About Results

[Ginger38]

I have positive Ttg-IGA antibodies- and I have every time they have been checked. Also the antibodies do respond positively to a gluten free diet. However my biopsy showed no damage and my doc said it all looked okay in there. How does this happen and What does this mean?? 

[Ginger38]

I forgot to add that my gastro doc was 💯 sure I had celiac and finally convinced me to do the gluten challenge which was TERRIBLE… I gained like 9 pounds and was so bloated and swollen and in pain.. all because he felt I needed this diagnosis.. which in the end I didn’t get .. It’s been frustrating. And I don’t understand why my body is throwing out antibodies in response to gluten consumption and those antibodies did decrease when I went gluten free .. sounds like celiac to me?

Its also been hard bc My family just doesn’t get it and isn’t very supportive of any of it bc I didn’t get that textbook diagnosis of celiac and didn’t have torn up villa

[Scott Adams]

It sounds like you're dealing with a really confusing and frustrating situation. Even though your biopsy didn't show damage, your positive TTG-IgA antibodies that respond to a gluten-free diet strongly suggest your body is reacting to gluten in a significant way. This could indicate potential celiac disease that just hasn't caused visible intestinal damage yet, or possibly non-celiac gluten sensitivity (NCGS), which doesn't show up on biopsies but can cause similar symptoms. Your terrible reaction to the gluten challenge - the weight gain, bloating, swelling and pain - is your body sending clear signals that gluten is problematic for you, regardless of what the biopsy showed.

It might be worth getting a second opinion from a different gastroenterologist or celiac specialist, as some doctors recognize that antibody tests and symptom response can be just as meaningful as biopsy results. Genetic testing could also provide more clues. I understand how frustrating it must be to not have that definitive diagnosis, especially when your family isn't being supportive. But your experience is valid - if removing gluten helps you feel better, that's what matters most. Many people in the celiac/gluten-sensitive community have similar stories of unclear test results but clear bodily reactions. You know your body best, and it's okay to trust those signals even without a textbook diagnosis.

[Ginger38]

2 hours ago, Scott Adams said:

It sounds like you're dealing with a really confusing and frustrating situation. Even though your biopsy didn't show damage, your positive TTG-IgA antibodies that respond to a gluten-free diet strongly suggest your body is reacting to gluten in a significant way. This could indicate potential celiac disease that just hasn't caused visible intestinal damage yet, or possibly non-celiac gluten sensitivity (NCGS), which doesn't show up on biopsies but can cause similar symptoms. Your terrible reaction to the gluten challenge - the weight gain, bloating, swelling and pain - is your body sending clear signals that gluten is problematic for you, regardless of what the biopsy showed.

It might be worth getting a second opinion from a different gastroenterologist or celiac specialist, as some doctors recognize that antibody tests and symptom response can be just as meaningful as biopsy results. Genetic testing could also provide more clues. I understand how frustrating it must be to not have that definitive diagnosis, especially when your family isn't being supportive. But your experience is valid - if removing gluten helps you feel better, that's what matters most. Many people in the celiac/gluten-sensitive community have similar stories of unclear test results but clear bodily reactions. You know your body best, and it's okay to trust those signals even without a textbook diagnosis.

Thank you 😊 Yes this whole process has been very frustrating! I didn’t think NCGS caused positive TTG-IGA antibodies? I thought NCGS was just a sensitivity but doesn’t cause ab autoimmune reaction which is what raises the antibody levels, correct? 
A formal diagnosis would have been so much easier for me as far as dealing with family and functions and foods. Since there is no proof of anything it’s just not possible for anyone to believe or accept. 

Also my brain needed to hear it.. bc now it seems to be questioning my sanity surrounding all this - bc my family questions it and life sure would be easier and less stressful if I could just eat gluten … 
I wish I could upload a photo of my stomach so you could see how pregnant i looked during the gluten challenge .. it was insane. 
 

[Scott Adams]

I believe many cases of nearly positive or elevated antibody tests for celiac disease could be caused by a pre-celiac stage, but it may also be NCGS. Clearly some are sensitive to gluten, thus the autoimmune response, however it may be possible for them to never have a positive biopsy and flattened villi, while some may end up with damaged villi over time.

 

[knitty kitty]

Yes, @Ginger38,  anti gluten antibodies are only found in Celiac Disease.  NCGS does have similar gastrointestinal symptoms as Celiac Disease, but no autoimmune antibodies are produced in NCGS.  NCGS may be a pre-Celiac state in people with a genetic predisposition for Celiac Disease.  

Have you had a genetic test?  You have to have inherited certain genes in order to develop Celiac Disease.  You don't have to eat gluten for a genetic test for celiac disease.  Some doctors will make a Celiac diagnosis if you have the genes and improvements on a gluten free diet.  Plus you've got positive antibodies.  You're in the tribe!  

All first degree relatives (mom, pop, siblings) should be tested, too.   

[Ginger38]

5 hours ago, knitty kitty said:

Yes, @Ginger38,  anti gluten antibodies are only found in Celiac Disease.  NCGS does have similar gastrointestinal symptoms as Celiac Disease, but no autoimmune antibodies are produced in NCGS.  NCGS may be a pre-Celiac state in people with a genetic predisposition for Celiac Disease.  

Have you had a genetic test?  You have to have inherited certain genes in order to develop Celiac Disease.  You don't have to eat gluten for a genetic test for celiac disease.  Some doctors will make a Celiac diagnosis if you have the genes and improvements on a gluten free diet.  Plus you've got positive antibodies.  You're in the tribe!  

All first degree relatives (mom, pop, siblings) should be tested, too.   

Hi! Thank you, this is the most validating information I have had shared with me. I wondered if all this was indicative of pre-celiac or just celiac that hasn’t caused damage. It’s been a long road with all this and I am burnt out on dealing with it all. And I am beyond tired of gastrointestinal issues and feeling poorly. I have had major improvements on a gluten free diet in the past and the antibodies decrease as well. Around the area where I live they don’t diagnose celiac without a positive biopsy. I asked my doc why I would have antibodies if it’s not celiac and he didn’t really have an Answer for that, which was frustrating.
They only test for 2 genes, the most common I think. Aren’t there more than just 2? 

[Ginger38]

5 hours ago, Scott Adams said:

I believe many cases of nearly positive or elevated antibody tests for celiac disease could be caused by a pre-celiac stage, but it may also be NCGS. Clearly some are sensitive to gluten, thus the autoimmune response, however it may be possible for them to never have a positive biopsy and flattened villi, while some may end up with damaged villi over time.

 

Thank you! This is helpful and validating, which is nice.  I am so tired of gastrointestinal issues and feeling poorly. Obviously my immune system is freaking out and seeing gluten as a foreign invader… and I feel like I’m just trying to doctor myself all the time but I did wonder if it was all indicative of pre celiac or something like that.  I haven’t gotten straightened out mentally or physically since the 8 week gluten challenge. My stomach is a mess and I’m over it 

[knitty kitty]

Yes, @Ginger38,  there are other genes for Celiac besides the two most common HLA DQ 2 and HLA DQ 8.  There are DQ 7 and DQ 9 to name a couple.  There are others.  

I understand how frustrating the diagnosis journey can be.  I had a difficult time getting diagnosed, too.  But you're through that now! 

Focus on your recovery and healing.  Try the AIP diet to help calm your system down.  Try supplementing with a B Complex to boost your absorption and to help heal and repair.  Benfotiamine has been shown to promote intestinal healing.  Benfotiamine helps keep SIBO in check and so reduce bloating.  

Keep us posted on your progress!  Best wishes!

[Ginger38]

Yes the journey here has been a long one. Is there any reason to continue to check blood antibody levels in the future? mine had not gotten to negative or zero yet . Thanks for all the great information! I will check out these supplements and hopefully start feeling better !!