New Here - Positive TTG-IGA - Questions

[Ginger38]

Hi all! I'm new here and looking for some guidance. Several years ago I was having a lot of abdominal pain and nausea and just an unhappy stomach. I had a celiac panel done, and my TTG-IGA antibodies were positive , but all other labs were normal. My practitioner at that time was like it's definitely not celiac but just try and avoid gluten. I went gluten-free strictly for several months and I felt much better. My sugar went up some and so she told me to go off the gluten-free diet. So I did. Off and on over the last several years I have struggled with this and I guess I'm just very confused and trying to get on a good path for myself. 

How could I have positive antibodies and it not be celiac? If celiac is autoimmune then I would be producing antibodies from.eating gluten, correct? It doesn't make sense to me that it wouldn't be celiac with positive antibodies. I don't want an endoscopy bc I honestly just can't afford it. 

I have always had terrible tooth enamel and I take care of my teeth. I also have chronic fatigue, Brain fog, random hives, itchy places on tops of my feet that blister over, hair loss, anxiety, depression, palpitations, swelling, nausea, lots of stomach issues like bloating and gas  and diarrhea that sometimes contains mucous. Nothing about my BM are normal. Those are just a few things out of many it seems. I'm not skinny though, I'm actually overweight and look pregnant sometimes and I thought people with celiac were losing weight and/or on the thinner side. 

so I go back and forth on this gluten-free thing bc if I don't have celiac its not serious, right? gluten-free food is expensive and doesnt taste very good. If I avoid it I always end up cheating in small amounts and cheating doesn't cause immediate issues so I cheat more and more and then I'm sick with all kinds of weird things almost feels like I have the flu, and sometimes its strictly GI issues. If I have celiac I am guessing its serious that I am not taking care of myself?? Bc if my gut even starts to heal I just keep killing it when I go back to any amounts of gluten??

Any thoughts and knowledge are greatly appreciated! Thanks! 

[trents]

If your TTG-IGA was positive it's just about guaranteed you have celiac disease. There are other antibody tests that can be run but the TTG-IGA is the center piece. Not sure why your physician was so adamant that you did not have celiac disease but the fact is most physicians are woefully ignorant about celiac disease and their knowledge is seldom current. What other labs do you refer to when you say "all other labs were normal"? Do you have access to and can you post the numbers (with reference ranges) for the TTG_IGA test or for any other IGA labs that are part of the celiac panel? 

The gold standard for confirming celiac disease is a the endoscopy with biopsy of the small bowel lining. The persistent inflammation caused by celiac disease damages the villi over time. 

Please realize that if you decide to go for more testing must be eating significant amounts of gluten on a regular basis. The guideline for the antibody testing is to be eating the equivalent of two slices of wheat bread daily for 6-8 weeks and for the endoscopy/biopsy the same amount for at least two weeks. Cutting back on gluten prior to testing will likely invalidate the testing.

As to the expense of eating gluten free, it is only true if you rely on a lot of gluten free processed, prepackaged, ready made foods. There are many mainstream foods that are gluten free but you have to focus on buying fresh meats, fruits and vegetables and be willing to do your own cooking.

[Scott Adams]

All of the symptoms you mentioned are consistent with celiac disease, and if your TTG-IGA antibodies were positive, then the only path to relief is a 100% gluten-free diet for life, no cheating. If you do have celiac disease and continue to eat gluten you will expose yourself to lifelong symptoms with may get worse over time, as well as many other related autoimmune diseases and a higher risk of intestinal lymphoma (cancer).

[Ginger38]

20 hours ago, trents said:

If your TTG-IGA was positive it's just about guaranteed you have celiac disease. There are other antibody tests that can be run but the TTG-IGA is the center piece. Not sure why your physician was so adamant that you did not have celiac disease but the fact is most physicians are woefully ignorant about celiac disease and their knowledge is seldom current. What other labs do you refer to when you say "all other labs were normal"? Do you have access to and can you post the numbers (with reference ranges) for the TTG_IGA test or for any other IGA labs that are part of the celiac panel? 

The gold standard for confirming celiac disease is a the endoscopy with biopsy of the small bowel lining. The persistent inflammation caused by celiac disease damages the villi over time. 

Please realize that if you decide to go for more testing must be eating significant amounts of gluten on a regular basis. The guideline for the antibody testing is to be eating the equivalent of two slices of wheat bread daily for 6-8 weeks and for the endoscopy/biopsy the same amount for at least two weeks. Cutting back on gluten prior to testing will likely invalidate the testing.

As to the expense of eating gluten free, it is only true if you rely on a lot of gluten free processed, prepackaged, ready made foods. There are many mainstream foods that are gluten free but you have to focus on buying fresh meats, fruits and vegetables and be willing to do your own cooking.

Hi, thanks for your response! This information is really helpful. I always felt like my practitioner was not accurate with her diagnosis, so all these years I've been eating whatever for the most part. I would eat gluten-free and then cheat and fall off the bandwagon and since I didn't get immediately sick I guess I thought maybe she was right ... Or I wanted her to be anyway.

My tTG-IgA antibodies were high and in the positive range. There is also this on the lab results "tTG has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten enteropathy" but not sure if any of that means anything. 

Are there other blood tests that have to be high or positive for it to be celiac disease? 

[Ginger38]

7 hours ago, Scott Adams said:

All of the symptoms you mentioned are consistent with celiac disease, and if your TTG-IGA antibodies were positive, then the only path to relief is a 100% gluten-free diet for life, no cheating. If you do have celiac disease and continue to eat gluten you will expose yourself to lifelong symptoms with may get worse over time, as well as many other related autoimmune diseases and a higher risk of intestinal lymphoma (cancer).

Thank you for responding, this is very helpful information! Yes, my TTG-IGA antibodies were flagged as high and in the positive range. Looks like I need to take this seriously and not plan on cheating anymore, which I'm sure will be hard bc I'm used to cheating, not really knowing if it was truly bad for me or not. 

So I'm curious about something... If I have celiac and I've been eating gluten and it causes inflammation in my gut, could that in turn make reflux worse and make foods like beans and other foods that are sometimes harder to digest in general worse? I notice when I start cheating repeatedly even in small amounts, I then have major issues if I eat beans, corn etc. I also get reflux constantly and oh the noises my stomach make 🙄😑 

[GodsGal]

1 hour ago, Ginger38 said:

Hi, thanks for your response! This information is really helpful. I always felt like my practitioner was not accurate with her diagnosis, so all these years I've been eating whatever for the most part. I would eat gluten-free and then cheat and fall off the bandwagon and since I didn't get immediately sick I guess I thought maybe she was right ... Or I wanted her to be anyway.

My tTG-IgA antibodies were high and in the positive range. There is also this on the lab results "tTG has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten enteropathy" but not sure if any of that means anything. 

Are there other blood tests that have to be high or positive for it to be celiac disease? 

Hi! I am not a medical professional, so I could be wrong. I think that the typical celiac blood panel tests for 4 different antibodies, one of which is tTG- IgA. It sounds like you have the blood tests covered. Sometimes I see people talking about genetic testing. But that would only tell you if you have the "celiac genes". It would not tell you if the genes were activated.

[trents]

1 hour ago, Ginger38 said:

So I'm curious about something... If I have celiac and I've been eating gluten and it causes inflammation in my gut, could that in turn make reflux worse and make foods like beans and other foods that are sometimes harder to digest in general worse? I notice when I start cheating repeatedly even in small amounts, I then have major issues if I eat beans, corn etc. I also get reflux constantly and oh the noises my stomach make 🙄😑 

Yes, yes, yes! You won't necessarily get sick immediately when consuming gluten. Some people with celiac disease are largely asymptomatic in the early stages of small bowel villi damage. We call them "silent celiacs". Obviously your physician was ignorant of that fact.

[GodsGal]

1 hour ago, Ginger38 said:

Thank you for responding, this is very helpful information! Yes, my TTG-IGA antibodies were flagged as high and in the positive range. Looks like I need to take this seriously and not plan on cheating anymore, which I'm sure will be hard bc I'm used to cheating, not really knowing if it was truly bad for me or not. 

So I'm curious about something... If I have celiac and I've been eating gluten and it causes inflammation in my gut, could that in turn make reflux worse and make foods like beans and other foods that are sometimes harder to digest in general worse? I notice when I start cheating repeatedly even in small amounts, I then have major issues if I eat beans, corn etc. I also get reflux constantly and oh the noises my stomach make 🙄😑 

Cheating could definitely cause all of those symptoms. Here again, I am not a medical professional, so this is how I understand it. The damage that is done to our small intestines causes "leaky bowel". Then we tend to develop intolerances. Some of the intolerances may improve as we stay on the gluten free diet. Others may not improve. 

Also many people report acid reflux as one of their celiac symptoms. 

 

[Ginger38]

Thanks for the response. Sorry I haven't been on here. Right after I posted all this my daughter became really sick with covid 😔 its made it really hard to deal with much else.

Not cheating is very hard to do but I feel like there's a good chance I actually have celiac which makes this much more serious and important to.not cheat 

[Ginger38]

On 9/30/2021 at 12:06 AM, trents said:

Yes, yes, yes! You won't necessarily get sick immediately when consuming gluten. Some people with celiac disease are largely asymptomatic in the early stages of small bowel villi damage. We call them "silent celiacs". Obviously your physician was ignorant of that fact.

Thank you for the response. Sorry I haven't been on here lately. Right after I posted this my daughter became really sick with covid 😔 its made it really hard to deal with much else. I do think there's a really good chance I actually have celiac which makes this much more serious and important for me to not cheat

[trents]

I would say that "there's a really good chance I actually have celiac disease" is a conservative, under-statement.

[Ginger38]

On 10/14/2021 at 12:09 PM, trents said:

I would say that "there's a really good chance I actually have celiac disease" is a conservative, under-statement.

Probably so.. guess I am still in denial

[GodsGal]

I think that it is pretty typical to have a denial stage. It's part of the grief process.

[trents]

1 hour ago, GodsGal said:

I think that it is pretty typical to have a denial stage. It's part of the grief process.

Yes. Tis true.