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 !! 

[knitty kitty]

No, there's no need to keep checking blood antibody levels.  The tests are meant to be used as diagnostic tools.  It can take several years for antibodies to completely disappear, if ever.  

Do get checked for anemia and thyroid problems if you fail to bounce back.  

I understand what it's like not to have family support.  You've got a large tribe here that believe.  

Take care of yourself.  Sending hugs!  Keep us posted on your progress!

[Ginger38]

On 6/6/2025 at 1:32 AM, knitty kitty said:

No, there's no need to keep checking blood antibody levels.  The tests are meant to be used as diagnostic tools.  It can take several years for antibodies to completely disappear, if ever.  

Do get checked for anemia and thyroid problems if you fail to bounce back.  

I understand what it's like not to have family support.  You've got a large tribe here that believe.  

Take care of yourself.  Sending hugs!  Keep us posted on your progress!

Okay, Thank you!! I already have thyroid problems and my total iron binding capacity is high which usually means low iron but everything else was normal, lower end but “normal” my hair falls out and my nails won’t grow without breaking but nothing is being treated iron wise. 

I have started having palpitations and chest pain,  both of which seem to be attributed to exposure to gluten. I’ve also been having a lot of nightmares, anxiety, numbness and tingling, brain fog, spotting between cycles and acne. Idk if all those are relatable to gluten / celiac but I’m concerned  I’ve finally tipped my body/ immune system into a bad place. Is there anyway to detox and heal faster or treat these symptoms if related to gluten ? 

[knitty kitty]

@Ginger38,

Have you been checked for nutritional deficiencies, besides iron?   Celiac disease causes inflammation which results in nutritional deficiencies.  

Iron needs Thiamine and the other B vitamins to make new red blood cells.  

Iodine and thiamine deficiencies affect the thyroid.  The thyroid is one organ that uses lots of thiamine.  

Vitamin D deficiency leads to hormonal problems, including menstrual problems.  Vitamin D needs Thiamine to activate it.  

Heart palpitations and chest pain after gluten exposure can be evidence of poor digestion and a drop in available thiamine.  Consumption of any  foods high in carbohydrates can cause a drop in thiamine.  This is called high calorie malnutrition.

Anxiety, numbness, tingling, acne, and brain fog are symptoms of Thiamine and the other B vitamin deficiencies.  There's eight B vitamins that all work together in concert.  They are water soluble.  They can be hard to absorb by inflamed intestines.  Vitamin A can improve acne.

I suffered from all the same symptoms which only resolved with B Complex and Thiamine (in the forms TTFD and Benfotiamine) supplements, Vitamins D, A and C.  Magnesium, Thiamine and B6 Pyridoxine will get rid of the nightmares.

Replenishing your vitamin and mineral stores will help heal and feel better faster.  Talk to your nutritionist and doctor about supplementing.

Think about adopting the Autoimmune Protocol diet to help with SIBO and MCAS to reduce bloating and heal the intestines.

@Alibu and I were just discussing diagnosis without obvious villus damage here.  

This study followed people who showed no or little villi damage at first....they accrued more damage over time.

Outcomes of Seropositive Patients with Marsh 1 Histology in Clinical Practice

https://pmc.ncbi.nlm.nih.gov/articles/PMC4980207/

There's a move to be less reliant on endoscopy for diagnosis.

Biopsy‐Sparing Diagnosis of Coeliac Disease Based on Endomysial Antibody Testing and Clinical Risk Assessment

https://pmc.ncbi.nlm.nih.gov/articles/PMC12074562/

[Ginger38]

On 6/17/2025 at 6:25 PM, knitty kitty said:

@Ginger38,

Have you been checked for nutritional deficiencies, besides iron?   Celiac disease causes inflammation which results in nutritional deficiencies.  

Iron needs Thiamine and the other B vitamins to make new red blood cells.  

Iodine and thiamine deficiencies affect the thyroid.  The thyroid is one organ that uses lots of thiamine.  

Vitamin D deficiency leads to hormonal problems, including menstrual problems.  Vitamin D needs Thiamine to activate it.  

Heart palpitations and chest pain after gluten exposure can be evidence of poor digestion and a drop in available thiamine.  Consumption of any  foods high in carbohydrates can cause a drop in thiamine.  This is called high calorie malnutrition.

Anxiety, numbness, tingling, acne, and brain fog are symptoms of Thiamine and the other B vitamin deficiencies.  There's eight B vitamins that all work together in concert.  They are water soluble.  They can be hard to absorb by inflamed intestines.  Vitamin A can improve acne.

I suffered from all the same symptoms which only resolved with B Complex and Thiamine (in the forms TTFD and Benfotiamine) supplements, Vitamins D, A and C.  Magnesium, Thiamine and B6 Pyridoxine will get rid of the nightmares.

Replenishing your vitamin and mineral stores will help heal and feel better faster.  Talk to your nutritionist and doctor about supplementing.

Think about adopting the Autoimmune Protocol diet to help with SIBO and MCAS to reduce bloating and heal the intestines.

@Alibu and I were just discussing diagnosis without obvious villus damage here.  

This study followed people who showed no or little villi damage at first....they accrued more damage over time.

Outcomes of Seropositive Patients with Marsh 1 Histology in Clinical Practice

https://pmc.ncbi.nlm.nih.gov/articles/PMC4980207/

There's a move to be less reliant on endoscopy for diagnosis.

Biopsy‐Sparing Diagnosis of Coeliac Disease Based on Endomysial Antibody Testing and Clinical Risk Assessment

https://pmc.ncbi.nlm.nih.gov/articles/PMC12074562/

No, I have not been checked for any other deficiencies or issues. No one will check these things since my EGD looked normal and there was no damage. I recently saw my gastro doc and it is just frustrating. I have diabetes, which is basically uncontrolled, and I keep being told, stop eating gluten free, because the gluten free diet is contributing to my diabetes worsening. Then I am told oh just eat gluten free and you can go on insulin, which I don't feel like is a good answer either. So I end up eating gluten because they tell me it's okay or that I should bc of my diabetes. I am so sick today - physically mentally emotionally - just tired of this roller coaster ride. 

I am open  for any realistic advice... I feel like I get more support here than in real life 

[knitty kitty]

@Ginger38,

Diabetes and Celiac often go hand in hand.  Having more than one autoimmune disease is common with Celiac.  I'd err on the side of caution and go gluten free.  

I did not want to go on insulin, either.  I got my diabetes under control by following the low histamine version of the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  My diet now does include carbs.  

We're supporting you through this difficult time.  

[Ginger38]

On 7/18/2025 at 4:06 AM, knitty kitty said:

@Ginger38,

Diabetes and Celiac often go hand in hand.  Having more than one autoimmune disease is common with Celiac.  I'd err on the side of caution and go gluten free.  

I did not want to go on insulin, either.  I got my diabetes under control by following the low histamine version of the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  My diet now does include carbs.  

We're supporting you through this difficult time.  

Thanks. I appreciate it