tTG Levels after 13 year gluten-free diet?

[Vinnys]

Hey all, so it's been 13 years since I was diagnosed with celiac disease. 6-months after I was diagnosed, my endoscopy showed as though everything was great and showed almost all healed from celiac disease. 

However, I've developped other symptoms along the years, in the lines of eggs, casein etc... I recently went to go get full blood work since the last time was 12 years ago and my tTG iga came out to 17.8 (according to the private lab, anything above 15 is positive). On my websites, above 10, you are positive. After speaking with the MD, she wasn't sure and was a little baffled that I didn't have any Celiac symptoms. I think i've only had 4 celiac accidents  within my 13-years of having celiac disease. 

Can someone explain and provide some links to explanations as to what is a normal range, especially after being on a strict diet for year. I was a little surprised as I've been extremely careful and not sure what else to cut out or is this a normal range for a Celiac after diet?

Thank you!

[trents]

Welcome to he forum, Vinnys!

Different laboratories use different ranges to designate negative vs. positive so knowing the range values used by the particular laboratory your blood samples are being sent to is the key here.

It seems you are now registering in the slightly positive range. I would not call this normal since it is a positive test value. Normal would be in the negative range. But abnormal is not the same as unusual. Your experience is probably very common.

After 13 years of truly gluten free eating your villi should be fully healed by now. That they are not suggests to me you are either getting small amounts of gluten on a regular basis or these other food intolerances you mention (egg, dairy, etc.) are causing a certain amount of small bowel inflammation.

[Vinnys]

  On 3/28/2022 at 4:36 PM, trents said:

Welcome to he forum, Vinnys!

Different laboratories use different ranges to designate negative vs. positive so knowing the range values used by the particular laboratory your blood samples are being sent to is the key here.

It seems you are now registering in the slightly positive range. I would not call this normal since it is a positive test value. Normal would be in the negative range. But abnormal is not the same as unusual. Your experience is probably very common.

After 13 years of truly gluten free eating your villi should be fully healed by now. That they are not suggests to me you are either getting small amounts of gluten on a regular basis or these other food intolerances you mention (egg, dairy, etc.) are causing a certain amount of small bowel inflammation.

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Thank you Trents. Right before and slightly after the blood work was done, I accidentally ingested a gluten-free dessert which I thought was vegan but had egg whites and ended up having a reaction to it. But my MD wasn't sure if an intelorance to eggs for instance, would increase the ttg iga value. That would be the only thing I can think of at this time. 

[Vinnys]

Sorry, the range was Negative <15  and Positive =>15.

[trents]

  On 3/28/2022 at 4:40 PM, Vinnys said:

Thank you Trents. Right before and slightly after the blood work was done, I accidentally ingested a gluten-free dessert which I thought was vegan but had egg whites and ended up having a reaction to it. But my MD wasn't sure if an intelorance to eggs for instance, would increase the ttg iga value. That would be the only thing I can think of at this time. 

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I don't know about eggs but we do know from research that dairy reactions blunt the villi like gluten reactions do. So, my theory is that anything that makes the gut unhappy like gluten does is probably creating inflammation in the small bowel. Personally, I have also developed an intolerance to egg. Whenever I consume more than about one egg at a time or am consuming even one daily on a regular basis I get a gut ache that feels very much like a small amount of glutening. Whether that inflammation from egg causes elevated tTG-IGA I do not know for sure.

[Scott Adams]

One accident before a test would not likely push your tTG levels this high. Is it possible that you may be getting small amounts of cross contamination? Do you eat out regularly? If so, this is the likely culprit. Studies have shown that cross contamination is common in restaurant foods.

Another possibility is casein or cow's milk intolerance:

 

[Vinnys]

  On 3/28/2022 at 4:51 PM, Scott Adams said:

One accident before a test would not likely push your tTG levels this high. Is it possible that you may be getting small amounts of cross contamination? Do you eat out regularly? If so, this is the likely culprit. Studies have shown that cross contamination is common in restaurant foods.

Another possibility is casein or cow's milk intolerance:

 

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Hi Scott, I am certainly Casein intolerant which was the first indicator for me prior to Celiac diagnosis. 

In terms of eating out, yes my wife and I eat out at least once a week on gluten-free options. But you would be correct that the cross contaminations could be the culprit. Although I don't get symptoms, that doesn't mean it's not affecting the gut in a negative way. 

I've either  had a strong reaction or no reaction but I guess not having a reaction is no indication of villi damage. I guess I was a little too cavalier, even in the "may contain" nuts and other foods could contributing to this. 

[Rogol72]

  On 3/28/2022 at 5:05 PM, Vinnys said:

Hi Scott, I am certainly Casein intolerant which was the first indicator for me prior to Celiac diagnosis. 

In terms of eating out, yes my wife and I eat out at least once a week on gluten-free options. But you would be correct that the cross contaminations could be the culprit. Although I don't get symptoms, that doesn't mean it's not affecting the gut in a negative way. 

I've either  had a strong reaction or no reaction but I guess not having a reaction is no indication of villi damage. I guess I was a little too cavalier, even in the "may contain" nuts and other foods could contributing to this. 

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@Vinnys,

We Coeliacs seem to develop additional intolerences over time! I'm 12 years with celiac disease and DH ... I requested a Coeliac panel in October last year to see how well I was adhering to the diet, my TTG levels were at 3.1. I rarely eat out at restaurants, I am strict gluten and dairy free ... though at the time of the blood test, I was only consuming milk in tea and coffee. Now I may be one of those people with a low serum Total IGA, which could account for the low number. I have an egg intolerance also ... I can get away with the occasional one or two here and there, but not two days in a row ... causes slight nausea. I eat mostly AIP paleo diet, just veggies, fruit, meat, poultry and fish ... and I'm very careful about cross contamination on the rare occasion I do eat out.

[Wheatwacked]

Vitamin D status? Low D is linked to autoimmune activity.

[Vinnys]

  On 3/28/2022 at 8:12 PM, Rogol72 said:

@Vinnys,

We Coeliacs seem to develop additional intolerences over time! I'm 12 years with celiac disease and DH ... I requested a Coeliac panel in October last year to see how well I was adhering to the diet, my TTG levels were at 3.1. I rarely eat out at restaurants, I am strict gluten and dairy free ... though at the time of the blood test, I was only consuming milk in tea and coffee. Now I may be one of those people with a low serum Total IGA, which could account for the low number. I have an egg intolerance also ... I can get away with the occasional one or two here and there, but not two days in a row ... causes slight nausea. I eat mostly AIP paleo diet, just veggies, fruit, meat, poultry and fish ... and I'm very careful about cross contamination on the rare occasion I do eat out.

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We certainly do...lol They mostly seem to be milk and eggs as the major ones. 

Funny enough after being diagnosed with Celiac, after getting the "all clear" on the second endoscopy that the diet was working, I had to travel in the US and at the time, I asbolutely needed to take the H1N1 vaccine during the epidemic. Sure enough, there were traces of eggs within the vaccine and since then, my immune system has never been the same. After ingesting eggs through baked products, the symptoms only appear a day or two later and come with the slight chills and just feeling unwell. It's an awful feeling. I was sick with Leaky Gut for an entire year after the vaccine and no one was able to figure out what was going on. Fun times!

  On 3/28/2022 at 9:19 PM, Wheatwacked said:

Vitamin D status? Low D is linked to autoimmune activity.

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Very interesting. The worst part is I actually have Vitamin D but don't take it regularly like my other supplements. I really should though because it. 

Also heard about Vitamin B1 being a potential saver for many bowel diseases. I still need to do research on it.

[Scott Adams]

After my diagnosis I also had issues with chicken eggs, but have no issues with duck eggs, which I can find here a local market, or one of our farmer's markets. Asian markets also sometimes carry them, but be sure not to get the ones with a red mark on top, which means it has a developed embryo inside (an Asian food). 

[Vinnys]

  On 3/29/2022 at 6:22 PM, Scott Adams said:

After my diagnosis I also had issues with chicken eggs, but have no issues with duck eggs, which I can find here a local market, or one of our farmer's markets. Asian markets also sometimes carry them, but be sure not to get the ones with a red mark on top, which means it has a developed embryo inside (an Asian food). 

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Very interesting Scott! I haven't tried duck eggs although I do eat duck. I'll definitely have to look for some for sure. You got me excited about having some sort of eggs. That's one thing I miss eating.