Elevated tTg IgA Antibodies 2 years into strict gluten free diet

[Acacia Voynar]

Hello!  My tTg IgA antibody levels continue to be elevated despite being on a strict gluten free diet for almost 2 years (1 year 10 months).  The iGg antibody levels have gone down to normal values but the IgA won't (this is for TTG only, not anti-gliadin antibodies).  They are checked every 6 months, and they usually decrease a bit, but still not in normal range.  The last reduction was the smallest yet, from 25.8 to 23.3.  I've asked several different doctors from primary care to GI specialist to everyone in between I've seen, and I get mixed answers about if that level should be normal at this point.  My diet is mainly whole foods I prepare myself in my gluten-free kitchen.  Any packaged food I do consume is clearly marked gluten free or certified and usually isn't processed, just packaged.  My husband does eat gluten in the house but has a separate area in the kitchen and doesn't prepare it on our cookware.  I do continue to experience symptoms but I am also battling gut dysbiosis and candida overgrowth for about a year and a half now, which diet & treatment hasn't really helped.  I'm looking for any insight you all have.  Thank you!

[Russ H]

When you say that your antibody levels are elevated, do you have the reference range?

Have you tried a low FODMAP diet to deal with your dysbiosis?

[trents]

What about gluten in meds, supplements and oral hygiene products? What about getting glutened from kissing your husband after he has consumed gluten?

[Acacia Voynar]

16 hours ago, Russ H said:

When you say that your antibody levels are elevated, do you have the reference range?

Have you tried a low FODMAP diet to deal with your dysbiosis?

Hi, Russ!

The tTG IgA antibodies standard range is <15.0 U/ml.  My last test (from this month) was 23.3.  Prior tests:

12/29/22: 25.8.

11/1/22: 29.3

6/27/22: 54.9

1/3/22: 80.2

8/5/22: 536 **This was what lead to my diagnosis and was before going gluten free**

Yes, I've tried low FODMAP for an extended period of time.  I've also eliminated sugars & starches.  My overgrowths only got worse after those attempts and supplements to treat the overgrowths.

16 hours ago, trents said:

What about gluten in meds, supplements and oral hygiene products? What about getting glutened from kissing your husband after he has consumed gluten?

I've checked all those areas thoroughly.  I do not kiss my husband if he's had gluten, until he brushes his teeth.

My question isn't about where there might be hidden gluten, I do have a grasp on that, it's about if that level can be raised for any reason other than gluten exposure? 

[Scott Adams]

To me it seems like hidden gluten could be the culprit, although there is some limited research that has shown that in some people who are sensitive to casein/dairy, consuming it can also elevate tTg levels. Do you eat in restaurants? If so, this would be a likely source of regular contamination.

 

[Acacia Voynar]

7 minutes ago, Scott Adams said:

To me it seems like hidden gluten could be the culprit, although there is some limited research that has shown that in some people who are sensitive to casein/dairy, consuming it can also elevate tTg levels. Do you eat in restaurants? If so, this would be a likely source of regular contamination.

 

Thanks, Scott.  No, I never eat in restaurants and I haven't had dairy for over a year (severe intolerance).

[Russ H]

5 hours ago, Acacia Voynar said:

Hi, Russ!

The tTG IgA antibodies standard range is <15.0 U/ml.  My last test (from this month) was 23.3.  Prior tests:

12/29/22: 25.8.

11/1/22: 29.3

6/27/22: 54.9

1/3/22: 80.2

8/5/22: 536 **This was what lead to my diagnosis and was before going gluten free**

Yes, I've tried low FODMAP for an extended period of time.  I've also eliminated sugars & starches.  My overgrowths only got worse after those attempts and supplements to treat the overgrowths.

I've checked all those areas thoroughly.  I do not kiss my husband if he's had gluten, until he brushes his teeth.

My question isn't about where there might be hidden gluten, I do have a grasp on that, it's about if that level can be raised for any reason other than gluten exposure? 

536! That is 35x the reference range. Considering it was that high I think you are doing very well. They are certainly falling.

Have you taken anti-fungal medication for the candida overgrowth?

[Acacia Voynar]

21 minutes ago, Russ H said:

536! That is 35x the reference range. Considering it was that high I think you are doing very well. They are certainly falling.

Have you taken anti-fungal medication for the candida overgrowth?

Thank you!  I just cannot get a clear answer if it should be in normal range by now or not.  I appreciate your input!   

I have been taking natural anti-fungals but I haven't done a prescription anti-fungal medication yet.  I am currently considering it but hesitant because antibiotics we're given to me twice through this journey for dysbiosis, both times making my symptoms much worse.

[Russ H]

It can take several years to come down although it generally takes less time than this. I have seen figures for the half-life of tTG2 antibodies as 2 months in children and 3-4 months in adults. It varies between people. After the sudden initial fall, yours are halving about every 5 months, which is not particularly excessive.

[Raquel2021]

What about cookware? Plastic containers? I had to replace my nonstick cookware and plastic containers to notice improvement.  I now use stainless steel only and glass containers.  Also utensils.  Multivamins or other medications.  Lipsticks.  And make everyone in the household wash hands after eating gluten.  Pretty crazy but is the only approach that works. Also no oats .

[Scott Adams]

Most celiacs would not need to go to this extent to have their antibody levels normalize, but everyone is different, and those who are supersensitive may need to take additional precautions.

[Russ H]

4 hours ago, Scott Adams said:

Most celiacs would not need to go to this extent to have their antibody levels normalize, but everyone is different, and those who are supersensitive may need to take additional precautions.

This case is coming down from a high level though. This plot is for IgA competent children, adults are slower.

https://link.springer.com/article/10.1007/s10238-023-01040-1

[Acacia Voynar]

15 hours ago, Russ H said:

This case is coming down from a high level though. This plot is for IgA competent children, adults are slower.

https://link.springer.com/article/10.1007/s10238-023-01040-1

Thank you Russ, this is very helpful!  Would you expect elevated levels to correlate with ongoing symptoms?  IgA levels outside of normal range would imply an autoimmune response is still occurring on some level?

[trents]

36 minutes ago, Acacia Voynar said:

Thank you Russ, this is very helpful!  Would you expect elevated levels to correlate with ongoing symptoms?  IgA levels outside of normal range would imply an autoimmune response is still occurring on some level?

Not necessarily. Many celiacs are of the "silent" type and have minimal or no symptoms.

[Acacia Voynar]

16 minutes ago, trents said:

Not necessarily. Many celiacs are of the "silent" type and have minimal or no symptoms.

What about the other way?  I continue to have symptoms... could the elevated IgA be the cause for the ongoing symptoms, despite the gluten-free diet?

[trents]

6 minutes ago, Acacia Voynar said:

What about the other way?  I continue to have symptoms... could the elevated IgA be the cause for the ongoing symptoms, despite the gluten-free diet?

I would think so. But it also begs the original question of are there other medical conditions that can cause elevated IGA? We know there are other conditions, foods and meds that can cause blunted villi but does that equate to elevated IGA? I can't seem to find an answer to that. All the googling I have done connects elevated tTG-IGA with celiac disease. Yet, the tTG-IGA is 98% accurate. So there is a 2% chance it is caused by something else. I just can't find any info as to what the other causes might be.

[Acacia Voynar]

29 minutes ago, trents said:

I would think so. But it also begs the original question of are there other medical conditions that can cause elevated IGA? We know there are other conditions, foods and meds that can cause blunted villi but does that equate to elevated IGA? I can't seem to find an answer to that. All the googling I have done connects elevated tTG-IGA with celiac disease. Yet, the tTG-IGA is 98% accurate. So there is a 2% chance it is caused by something else. I just can't find any info as to what the other causes might be.

Thanks for your research, I really appreciate it!  I did have a follow up endoscopy in January and the preforming GI doctor said the Celiac damage was completely healed and there is no inflammation. 

[trents]

11 minutes ago, Acacia Voynar said:

Thanks for your research, I really appreciate it!  I did have a follow up endoscopy in January and the preforming GI doctor said the Celiac damage was completely healed and there is no inflammation. 

Was that his report from visual inspection during the endoscopy or was it the lab report from microscopic examination?

[Acacia Voynar]

1 minute ago, trents said:

Was that his report from visual inspection during the endoscopy or was it the lab report from microscopic examination?

I believe both - a biopsy was done.

[trents]

If you still have candida overgrowth I would urge you to consider the ketogenic diet. That would starve out the candida which thrives on sugars and starches.

[Acacia Voynar]

23 minutes ago, trents said:

If you still have candida overgrowth I would urge you to consider the ketogenic diet. That would starve out the candida which thrives on sugars and starches.

I eliminated most sugars and starches over a year ago and then completely eliminated them in September.  The overgrowth only got worse during that time.  I'm still avoiding sugar and starch and using herbal supplements for treatment.  

[trents]

Have you considered fecal transplant therapy?

[Scott Adams]

17 hours ago, Russ H said:

This case is coming down from a high level though. This plot is for IgA competent children, adults are slower.

https://link.springer.com/article/10.1007/s10238-023-01040-1

I agree that this can be the case, however, something like 20-30% of people who have been diagnosed with celiac disease fail to properly follow a gluten-free diet. Many continue eating out, cheat on their diets, etc., so it's unclear exactly what this chart is showing here. For those in the study who took longer than 2 years it may be showing a dietary compliance issue, rather than the actual time necessary if someone is 100% gluten-free.

[Acacia Voynar]

7 minutes ago, trents said:

Have you considered fecal transplant therapy?

I have thought about it and I am open to it but I haven't researched it yet.  I am seeing an integrative medicine dr on Tuesday and a functional medicine dr next month first.  If those don't work out, I will next consider a fecal transplant.  Do you know how effective it is for candida, bacterial overgrowth and food sensitives? 

[trents]

6 minutes ago, Acacia Voynar said:

I have thought about it and I am open to it but I haven't researched it yet.  I am seeing an integrative medicine dr on Tuesday and a functional medicine dr next month first.  If those don't work out, I will next consider a fecal transplant.  Do you know how effective it is for candida, bacterial overgrowth and food sensitives? 

No, I don't. But just intuitively I would guess it might be effective against gut dysbiosis but not against things that have a genetic base to them.