what else can cause ttg iga to increase?

[Karinosa]

I was diagnosed 6 years ago first blood test, ttg iga was 65 (normal >15), confirmed via biopsy, went fully gluten free, our household is fully gluten free, after a couple of years my ttg iga went down to normal levels at 7 (normal >15) then all of a sudden during normal checkups my ttg iga started increasing rapidly, every month after that it keeps increasing, my Gastro repeated the biopsy and my villi continues to show that it has healed, he said that the ttg iga increasing is not from gluten exposure.  I have extreme reactions to the tiniest amount of gluten and I have not had my regular "glutened" symptoms in years, I take my food everywhere I go as I get so sick, I do eat at restaurants (a handful trusted ones) and I ask so many questions, again I am super sensitive to cross contamination and I react within 10 minutes and I have not had any of my typical symptoms.  
Before I was diagnosed I had gained a lot of weight in spite of eating healthy, once I went gluten free and my ttg iga started to decrease the weight started to come off without trying, I was feeling great, once my ttg started to increase again a year ago, my weight has increased again and I'm still eating like before.  My gastro is puzzled, he does not know why my ttg iga would be increasing in number while my biopsy shows there is no damage.  I have other illnesses: POTS, MCAS, gastroparesis, alopecia, sleep apnea, celiac disease of course, this past year I was told my antibodies for graves disease are slightly elevated and was also diagnosed with TED (thyroid eye disease), only meds I'm on are for MCAS and a 100% gluten free diet.  I have had numerous tests, referred to several specialists and no one seems to know why the ttg iga is increasing, I should mention that now my ttg iga is 135 (normal <15) which is higher than before I was diagnosed with celiac and back then I was eating gluten.  My sugar levels are normal both fastin and a1c.  For my thyroid only the TRab antibodies were slightly higher than normal, my TSH was low once and then back up to normal next time it was tested, t3 and t4 have been normal every time I have it tested.  Has anyone else experienced this? I am convinced that having the ttg iga so high is what's affecting my weight gain, I feel sick all the time - tired, brain fog, etc but do not have my normal I've been glutened symptoms, and again the biopsy confirmed I have no damage from gluten, so what is it? I have an appointment with my Endo but not until march and follow up with Gastro not until april.  I just want to feel better  

[knitty kitty]

Hello, @Karinosa,

Are you consuming dairy?

Half of all Celiacs react the same to dairy as they would to gluten.  

Try cutting out dairy and see if things improve.

Have you been checked for vitamin and mineral deficiencies? 

POTS, MCAS, gastroparesis, alopecia, sleep apnea, and autoimmune diseases are associated with Thiamine deficiency disorders.  

I've had all those symptoms and more that only improved with high dose Thiamine.  

Even people who have been on a gluten free diet for a long time can have nutritional deficiencies.  Gluten free processed foods are not required to be enriched with vitamins and minerals like their gluten containing counterparts.

This site has been very helpful in my journey with Thiamine deficiency....

https://www.hormonesmatter.com/thiamine-deficiency-causes-problems/

Edited January 13, 2024 by knitty kitty

[Karinosa]

4 minutes ago, knitty kitty said:

Hello, @Karinosa,

Are you consuming dairy?

Half of all Celiacs react the same to dairy as they would to gluten.  

Try cutting out dairy and see if things improve.

very little, nothing more than when my ttg was normal.  Does dairy increase ttg?

[knitty kitty]

Yes, dairy can cause the increase in tTg IgA just like gluten.  A segment of the gluten molecules resemble a segment in dairy molecules.  It's molecular mimicry. 

Be as strict with dairy as you are with gluten and see if symptoms improve.

Edited January 13, 2024 by knitty kitty
Typo

[Raquel2021]

1 hour ago, Karinosa said:

I was diagnosed 6 years ago first blood test, ttg iga was 65 (normal >15), confirmed via biopsy, went fully gluten free, our household is fully gluten free, after a couple of years my ttg iga went down to normal levels at 7 (normal >15) then all of a sudden during normal checkups my ttg iga started increasing rapidly, every month after that it keeps increasing, my Gastro repeated the biopsy and my villi continues to show that it has healed, he said that the ttg iga increasing is not from gluten exposure.  I have extreme reactions to the tiniest amount of gluten and I have not had my regular "glutened" symptoms in years, I take my food everywhere I go as I get so sick, I do eat at restaurants (a handful trusted ones) and I ask so many questions, again I am super sensitive to cross contamination and I react within 10 minutes and I have not had any of my typical symptoms.  
Before I was diagnosed I had gained a lot of weight in spite of eating healthy, once I went gluten free and my ttg iga started to decrease the weight started to come off without trying, I was feeling great, once my ttg started to increase again a year ago, my weight has increased again and I'm still eating like before.  My gastro is puzzled, he does not know why my ttg iga would be increasing in number while my biopsy shows there is no damage.  I have other illnesses: POTS, MCAS, gastroparesis, alopecia, sleep apnea, celiac disease of course, this past year I was told my antibodies for graves disease are slightly elevated and was also diagnosed with TED (thyroid eye disease), only meds I'm on are for MCAS and a 100% gluten free diet.  I have had numerous tests, referred to several specialists and no one seems to know why the ttg iga is increasing, I should mention that now my ttg iga is 135 (normal <15) which is higher than before I was diagnosed with celiac and back then I was eating gluten.  My sugar levels are normal both fastin and a1c.  For my thyroid only the TRab antibodies were slightly higher than normal, my TSH was low once and then back up to normal next time it was tested, t3 and t4 have been normal every time I have it tested.  Has anyone else experienced this? I am convinced that having the ttg iga so high is what's affecting my weight gain, I feel sick all the time - tired, brain fog, etc but do not have my normal I've been glutened symptoms, and again the biopsy confirmed I have no damage from gluten, so what is it? I have an appointment with my Endo but not until march and follow up with Gastro not until april.  I just want to feel better  

I am sorry to hear about your journey. In addition to celiac I have Hashimotos. I was also experiencing paresthesia on head/face and limbs. After months of experimenting with foods elimination I discovered iodine rich foods were the cause of my paresthesia.  So I eliminated dairy, eggs, soy and iodized salt.I dont eat seaweed so that was not a problem.  I eat nuts/seeds, all types of meat/seafood  and a ton of vegetables.  A few carbs, platains, eddos, some sweet potatoes. Some beans and rice. But mainly vegetables and meat and a bit of fruits.  It is a lot but my paresthesia is 99 % gone. My celiac antibodies are normal. It was my endocrinologist who told me thyroid patients do better on a low iodine diet. I also had stabbing pains on my throat in addition to fatigue, brain fog. I am just happy thr paresthesia has stopped.  I did see a neurologist and do not have MS. I also don't eat any processed sugars. So AIP or paleo style diets are the ones that help autoimmunity. 

[Scott Adams]

As mentioned, in some people cow's milk can trigger elevated tTg-IgA:

 

[Karinosa]

On 1/13/2024 at 10:06 AM, knitty kitty said:

Yes, dairy can cause the increase in tTg IgA just like gluten.  A segment of the gluten molecules resemble a segment in dairy molecules.  It's molecular mimicry. 

Be as strict with dairy as you are with gluten and see if symptoms improve.

do you happen to have a link to where it says that dairy can increase ttg please? preferably from a scientific source.  TIA

 

On 1/13/2024 at 11:12 AM, Raquel2021 said:

I am sorry to hear about your journey. In addition to celiac I have Hashimotos. I was also experiencing paresthesia on head/face and limbs. After months of experimenting with foods elimination I discovered iodine rich foods were the cause of my paresthesia.  So I eliminated dairy, eggs, soy and iodized salt.I dont eat seaweed so that was not a problem.  I eat nuts/seeds, all types of meat/seafood  and a ton of vegetables.  A few carbs, platains, eddos, some sweet potatoes. Some beans and rice. But mainly vegetables and meat and a bit of fruits.  It is a lot but my paresthesia is 99 % gone. My celiac antibodies are normal. It was my endocrinologist who told me thyroid patients do better on a low iodine diet. I also had stabbing pains on my throat in addition to fatigue, brain fog. I am just happy thr paresthesia has stopped.  I did see a neurologist and do not have MS. I also don't eat any processed sugars. So AIP or paleo style diets are the ones that help autoimmunity. 

glad you found something that gave you relief.  I'm more interested in trying to figure out why my TTG is increasing when I'm not consuming gluten.

[Karinosa]

On 1/13/2024 at 3:12 PM, Scott Adams said:

As mentioned, in some people cow's milk can trigger elevated tTg-IgA:

 

thanks for the reply, I don't drink cow's milk.  I do have cheese occasionally or yogurt like once a month, but not an actual glass of milk.  Do you know if it is only cow's milk or dairy in foods?   I was fine for 5 years and out of the blue my ttg started to increase, I have not changed my diet which is what is so strange.  Any other info on this will be much appreciated.

[Raquel2021]

1 hour ago, Karinosa said:

do you happen to have a link to where it says that dairy can increase ttg please? preferably from a scientific source.  TIA

 

glad you found something that gave you relief.  I'm more interested in trying to figure out why my TTG is increasing when I'm not consuming gluten.

Like others have mentioned there are other foods that mimic gluten so the body might "see" these foods as gluten and have the same reaction as if you were consuming gluten.  That was the point of my explanation.  Going gluten free only most of the time is not enough.  I think there is a lot to be discovered about this unfortunate disease.  I know that when I eat dairy now I get a rash on my back have a bunch of other reactions to it. That never used to happen to me 10 years ago. 

[knitty kitty]

@Karinosa,

Sure, I'm a big fan of scientific sources....

Mucosal reactivity to cow's milk protein in coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

And...

Anti-tissue transglutaminase antibodies not related to gluten intake

https://pubmed.ncbi.nlm.nih.gov/29555204/

 

[Scott Adams]

This article might be helpful:

 

[Karinosa]

On 1/27/2024 at 7:42 PM, Raquel2021 said:

Like others have mentioned there are other foods that mimic gluten so the body might "see" these foods as gluten and have the same reaction as if you were consuming gluten.  That was the point of my explanation.  Going gluten free only most of the time is not enough.  I think there is a lot to be discovered about this unfortunate disease.  I know that when I eat dairy now I get a rash on my back have a bunch of other reactions to it. That never used to happen to me 10 years ago. 

thank you so much for your reply, the thing is - I have no GI symptoms, nor do I have any symptoms that I had before I was diagnosed with celiac disease, my TtG had gone back down to normal after I went gluten free when I was diagnosed and without reason it has gone back up, my biopsy is normal now because I'm fully gluen free.  Thanks anyway for sharing your experience.

[Karinosa]

On 1/27/2024 at 9:36 PM, knitty kitty said:

@Karinosa,

Sure, I'm a big fan of scientific sources....

Mucosal reactivity to cow's milk protein in coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

And...

Anti-tissue transglutaminase antibodies not related to gluten intake

https://pubmed.ncbi.nlm.nih.gov/29555204/

 

thank you for the links, from what I understand and correct me if I'm understanding it wrong, if people react to cow's mil protein their ttg will go up but they will also have intestinal damage correct?? Because I no longer have villi atrophy, my gastroenterologists says the gluten free diet is working as it has healed, it is just the ttg that was normal after I went gluten free and then years later it started to increase and it goes higher each month. My doctor's are puzzled.

[Karinosa]

On 1/29/2024 at 1:16 PM, Scott Adams said:

This article might be helpful:

 

Thank you for this article.  I was sent to an internist and he is actually going to be testing me for all of those illnesses mentioned, based on what I'm researching I think it is my thyroid as my TRab is now slightly elevated pointing to Graves Disease.  I no longer have intestinal damage as my gastroenterologist repeated the scope and biopsy and villi does not show atrophy like it did before I went gluten free, so he is confident to say my ttg is not from gluten.  I don't have GI symptoms and if I was to get glutened my symptoms are very specific and I have not had that in years. The other articles that were shared here saying it could be milk, do you know if the cow's milk protein would also cause intestinal damage like gluten does for those that react to CMP? 

 

[knitty kitty]

2 hours ago, Karinosa said:

thank you for the links, from what I understand and correct me if I'm understanding it pwrong, if people react to cow's mil protein their ttg will go up but they will also have intestinal damage correct?? Because I no longer have villi atrophy, my gastroenterologists says the gluten free diet is working as it has healed, it is just the ttg that was normal after I went gluten free and then years later it started to increase and it goes higher each month. My doctor's are puzzled.

It can take months to years of exposure to gluten (or casein) for the villi damage to become observable with the eye.  Most of the early damage is microscopic.  

Were biopsy samples taken during your most recent endoscopy?  

There is a food additive, Microbial Transglutaminase, that can elicit the same tTg response.  Microbial Transglutaminase is added to processed foods to enhance texture and taste.  Microbial Transglutaminase is used in gluten containing products, in dairy products, formed meat, and also in gluten free facsimile foods.  

Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8537092/

Processed Food Additive Microbial Transglutaminase and Its Cross-Linked Gliadin Complexes Are Potential Public Health Concerns in Celiac Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7037116/

And...

Intestinal Anti-tissue Transglutaminase2 Autoantibodies: Pathogenic and Clinical Implications for Celiac Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7273338/

Edited January 30, 2024 by knitty kitty
Typo correction

[knitty kitty]

 

[Scott Adams]

3 hours ago, Karinosa said:

Thank you for this article.  I was sent to an internist and he is actually going to be testing me for all of those illnesses mentioned, based on what I'm researching I think it is my thyroid as my TRab is now slightly elevated pointing to Graves Disease.  I no longer have intestinal damage as my gastroenterologist repeated the scope and biopsy and villi does not show atrophy like it did before I went gluten free, so he is confident to say my ttg is not from gluten.  I don't have GI symptoms and if I was to get glutened my symptoms are very specific and I have not had that in years. The other articles that were shared here saying it could be milk, do you know if the cow's milk protein would also cause intestinal damage like gluten does for those that react to CMP? 

 

I just did the research on the article I shared and found that cow's milk protein is associated with other conditions, such as cow's milk protein allergy (CMPA) or lactose intolerance, but these conditions typically do not cause villous atrophy similar to celiac disease. CMPA involves an immune reaction to proteins found in cow's milk, leading to various symptoms, but it does not result in the characteristic damage to the small intestine seen in celiac disease.

[Karinosa]

On 1/30/2024 at 5:56 PM, Scott Adams said:

I just did the research on the article I shared and found that cow's milk protein is associated with other conditions, such as cow's milk protein allergy (CMPA) or lactose intolerance, but these conditions typically do not cause villous atrophy similar to celiac disease. CMPA involves an immune reaction to proteins found in cow's milk, leading to various symptoms, but it does not result in the characteristic damage to the small intestine seen in celiac disease.

thanks for the follow up info, my case is strange - I do not have GI symptoms of gluten consumption, I do not have villi damaged as confirmed by biopsy, I did have villi damaged before I was diagnosed with celiac and had not gone gluten free, but I do have elevated TTG that keeps going higher and higher every month, I'm puzzled and so are my doctors.

 

[Scott Adams]

The number one cause among people with celiac disease would be getting hidden gluten in their diets, but the article I shared may give you more ideas that you can share with your doctor.

 

[Karinosa]

On 2/27/2024 at 4:39 PM, Scott Adams said:

The number one cause among people with celiac disease would be getting hidden gluten in their diets, but the article I shared may give you more ideas that you can share with your doctor.

 

Thank you, yes my Internist is testing me for  IBD, liver and thyroid, I will see him in 2 weeks.  Hidden gluten would make sense but I have a 100% gluten free home, no GI symptoms, I react very badly to the tiniest amount of cross contamination and my Gastro confirmed it is not from gluten ingestion as my villi has healed from the biopsy I had done when my TTG kept climbing, there is definetely a different dissease affecting my TTG  

 

[Scott Adams]

Let us know what you find out.

[Annaannamal]

Hi, any progress or diagnosis? I am experiencing the same thing. Initial decrease in ttg iga and now it’s high again, but igg is now in the normal range. Was recently diagnosed with gastroparesis as well. Fatigue and headaches, seems different than my celiac symptoms. 

[Wheatwacked]

•  Gastroparesis can be caused by deficiency of acetycholine (deficient choline intake).
• Gastroparesis can be caused by vitamin D deficiency
• vitamin B12 deficiency is linked to gastroparesis
• Thiamine B1 deficiency can cause autonomic nervous failure in the gastrointestinal system, which can lead to gastroparesis.

Celiac Disease causes malabsorption of these and many other vitamins in the small intestine.

The gluten free diet is only step one to recovery.   One has to replete the comorbid nutrient deficiencies in order to heal.