TTG IGA numbers for son not going down

[Wilsontribe5]

My son was diagnosed in Feb 2019 when he was 7 years old.  He would only get slight stomach aches, his main symptom was that he wasn't growing well (which we later found out was actually due to growth hormone deficiency).  So I think he's mostly asymptomatic other than slight stomach ache.  While this is good, it makes it almost impossible to know if he gets glutened.   His TTG IGA numbers started off above 300 and have slowly come down to around 30 after almost 3 years gluten free (1.5x upper limit) and he plateaued there for 9 months.  His doc wanted to give it one more chance to come down lower before ordering a 2nd upper Endo.  His blood work came back at 47 earlier today...l feel so defeated. 

We've been so careful.  I keep almost a gluten free household.  I allow packaged gluten food for my non-Celiac kids but they have to eat it at their spot on a paper plate and wash up immediately afterwards.  No sponges, cookware, or utensils touch gluten in my house.  I pack all his school lunches, and food away from home.  We used gluten detect stool sampling to vet the 5 restaurants we sometimes go to and I make sure each time to carefully outline his disease with our server.  All vitamins, medications, shampoo products, cleaning supplies & dish detergents I've checked out.    I brought up maybe our spices being cross contaminated to our GI doc, but she seemed to think simple cross contamination from spices  would not show up this long in his blood work.  

Are there other autoimmune diseases that would give higher TTG IGA numbers?  Is the level of cross contamination too hard to eliminate completely without living in a bubble?  Can he still have slightly elevated numbers without intestinal damage?  I will be meeting with our GI Doc from Children's Hospital on Tuesday and I figure another upper Endo is in the cards, but I would just love some other answers from those of you have been there and have gone through this.

 

Thanks Everyone!

[trents]

13 minutes ago, Wilsontribe5 said:

My son was diagnosed in Feb 2019 when he was 7 years old.  He would only get slight stomach aches, his main symptom was that he wasn't growing well (which we later found out was actually due to growth hormone deficiency).  So I think he's mostly asymptomatic other than slight stomach ache.  While this is good, it makes it almost impossible to know if he gets glutened.   His TTG IGA numbers started off above 300 and have slowly come down to around 30 after almost 3 years gluten free (1.5x upper limit) and he plateaued there for 9 months.  His doc wanted to give it one more chance to come down lower before ordering a 2nd upper Endo.  His blood work came back at 47 earlier today...l feel so defeated. 

We've been so careful.  I keep almost a gluten free household.  I allow packaged gluten food for my non-Celiac kids but they have to eat it at their spot on a paper plate and wash up immediately afterwards.  No sponges, cookware, or utensils touch gluten in my house.  I pack all his school lunches, and food away from home.  We used gluten detect stool sampling to vet the 5 restaurants we sometimes go to and I make sure each time to carefully outline his disease with our server.  All vitamins, medications, shampoo products, cleaning supplies & dish detergents I've checked out.    I brought up maybe our spices being cross contaminated to our GI doc, but she seemed to think simple cross contamination from spices  would not show up this long in his blood work.  

Are there other autoimmune diseases that would give higher TTG IGA numbers?  Is the level of cross contamination too hard to eliminate completely without living in a bubble?  Can he still have slightly elevated numbers without intestinal damage?  I will be meeting with our GI Doc from Children's Hospital on Tuesday and I figure another upper Endo is in the cards, but I would just love some other answers from those of you have been there and have gone through this.

 

Thanks Everyone!

I'm not sure how reliable stool sample testing is. Eating out is probably the single most risky environment for those trying to eat gluten free. Studies have shown this. There are just too many variables in food preparation and handling in a restaurant setting to ever feel you can have control and are eating safely. It is likely that kitchen staff will vary tremendously in how well they comply with your requests from one time to another. They will nod in compliance but who knows how well they follow through.

Also, a recent large study conducted by the Mayo Clinic revealed that 44% of first degree relatives of those with celiac disease also have celiac disease. Have you and your husband and other children been tested? To be fair, other studies have shown a much lower incidence of celiac disease rates in family members but whatever it is it bears consideration. It is much easier to avoid getting glutened when everyone else in the family is also eating gluten free. Unfortunately, your analogy of "living in a bubble" as the only way to be safe as a celiac has almost too much truth to it.

Is your son still consuming dairy? There are studies that show that the dairy protein casein can blunt small bowel villi just like gluten for some people.

Edited December 4, 2021 by trents

[cristiana]

Hello Wilson

Whilst there are some other auto immune diseases that can skew numbers, and I am sorry as I don't have a list readily available here - I'm hoping someone else will chime in - in a celiac the most obvious culprit is gluten exposure.

I sympathise as my TTG numbers have taken a long time to come down.   They were over 100 in 2013 (not sure how high, as that is the lab cut off point in the UK national health system) and were still in the 80s in 2017.   I was trying to be so strict too. Finally, this year, I have had a result come in at 9 - truthfully, I never though It would happen!  I have had an endoscopy three times during this time period - in 2013, the biopsies revealed extensive damage, but the two subsequent ones showed Marsh Scale one, which as I understand it shows more lymphocytes than are normal, but no actual visible damage as such. 

I think for me not eating out has been a huge factor in my ultimate recovery, and avoiding the well meaning cuisine of those who aren't really conversant with celiac disease but cook something for me anyway.  Over time, I think has made the biggest difference.  And also getting rid of a really odd dodgy dishwasher that wasn't rinsing things properly.  And finally realising that a supplement I was taking occasionally contained gluten.  A holiday in France in 2019 sent my numbers up again - food labelling laws clearly weren't as stringent there as they were in the UK at the time, although of course things may have changed since then.

Not sure if this if of any use, but do come back to me if you have any questions.

Cristiana

Edited December 4, 2021 by cristiana

[RMJ]

Does he eat oats?  Some with celiac disease react even to gluten free oats because of the avenin protein.

[Wilsontribe5]

14 hours ago, trents said:

I'm not sure how reliable stool sample testing is. Eating out is probably the single most risky environment for those trying to eat gluten free. Studies have shown this. There are just too many variables in food preparation and handling in a restaurant setting to ever feel you can have control and are eating safely. It is likely that kitchen staff will vary tremendously in how well they comply with your requests from one time to another. They will nod in compliance but who knows how well they follow through.

Also, a recent large study conducted by the Mayo Clinic revealed that 44% of first degree relatives of those with celiac disease also have celiac disease. Have you and your husband and other children been tested? To be fair, other studies have shown a much lower incidence of celiac disease rates in family members but whatever it is it bears consideration. It is much easier to avoid getting glutened when everyone else in the family is also eating gluten free. Unfortunately, your analogy of "living in a bubble" as the only way to be safe as a celiac has almost too much truth to it.

Is your son still consuming dairy? There are studies that show that the dairy protein casein can blunt small bowel villi just like gluten for some people.

Our GI Doc recommended the stool testing.  It casts a wide net, so it's hard to pinpoint exactly where you get glutened but it does indicate if you were glutened in the last few days.  But I do get what you are saying about the the handling being different every time, so it's just possible we need to stay away from restaurants for a time. 

Yes me and my husband and other children were first blood tested for TTG IGA back in 2020 and we all came back negative with really low numbers (mine was like .01) and will be tested every 3 years for my other kids & every 5 years for the adults.  

 

Thanks

[Wilsontribe5]

8 hours ago, cristiana said:

Hello Wilson

Whilst there are some other auto immune diseases that can skew numbers, and I am sorry as I don't have a list readily available here - I'm hoping someone else will chime in - in a celiac the most obvious culprit is gluten exposure.

I sympathise as my TTG numbers have taken a long time to come down.   They were over 100 in 2013 (not sure how high, as that is the lab cut off point in the UK national health system) and were still in the 80s in 2017.   I was trying to be so strict too. Finally, this year, I have had a result come in at 9 - truthfully, I never though It would happen!  I have had an endoscopy three times during this time period - in 2013, the biopsies revealed extensive damage, but the two subsequent ones showed Marsh Scale one, which as I understand it shows more lymphocytes than are normal, but no actual visible damage as such. 

I think for me not eating out has been a huge factor in my ultimate recovery, and avoiding the well meaning cuisine of those who aren't really conversant with celiac disease but cook something for me anyway.  Over time, I think has made the biggest difference.  And also getting rid of a really odd dodgy dishwasher that wasn't rinsing things properly.  And finally realising that a supplement I was taking occasionally contained gluten.  A holiday in France in 2019 sent my numbers up again - food labelling laws clearly weren't as stringent there as they were in the UK at the time, although of course things may have changed since then.

Not sure if this if of any use, but do come back to me if you have any questions.

Cristiana

Thanks Cristiana,

I think you're right about the restaurants.  I'm so careful at home with my cutting boards being brand new and never being cross contaminated as well as my pots and pans and any other potentially porous surfaces- but well meaning restaurants probably aren't as careful.  I think we may try 100% home cooking for 2-3 months and redo the blood work and see what happens.  

[Wilsontribe5]

4 hours ago, RMJ said:

Does he eat oats?  Some with celiac disease react even to gluten free oats because of the avenin protein.

I've wondered about this and brought it up with my GI Doc and she said that while he can have a negative reaction to oats it would not affect his TTG IGA numbers.  I've also heard that food with lectins (like nightshades and oats) can have a negative impact but I'm not sure regarding the IGA numbers.  We'll probably wait and see what the next Endo reveals.  
Thanks!

 

[trents]

44 minutes ago, Wilsontribe5 said:

I've wondered about this and brought it up with my GI Doc and she said that while he can have a negative reaction to oats it would not affect his TTG IGA numbers.  I've also heard that food with lectins (like nightshades and oats) can have a negative impact but I'm not sure regarding the IGA numbers.  We'll probably wait and see what the next Endo reveals.  
Thanks!

 

What about dairy?

[Wilsontribe5]

41 minutes ago, trents said:

What about dairy?

We do eat a lot of dairy in this house but I haven't noticed my son having a negative reaction at all.  

[cristiana]

2 hours ago, Wilsontribe5 said:

Thanks Cristiana,

I think you're right about the restaurants.  I'm so careful at home with my cutting boards being brand new and never being cross contaminated as well as my pots and pans and any other potentially porous surfaces- but well meaning restaurants probably aren't as careful.  I think we may try 100% home cooking for 2-3 months and redo the blood work and see what happens.  

That sounds like a very good plan.   Some celiacs seem to be much more sensitive to gluten exposure than others - I have celiac  friends who eat out and never have any issues but I had so many bad experiences eating out that I tend to avoid it.

Edited December 4, 2021 by cristiana

[trents]

2 hours ago, Wilsontribe5 said:

We do eat a lot of dairy in this house but I haven't noticed my son having a negative reaction at all.  

So I think he's mostly asymptomatic other than slight stomach ache.  While this is good, it makes it almost impossible to know if he gets glutened.

Maybe you should take this slight stomach ache more seriously. And if it's not from gluten it could be from dairy. I'm not talking about lactose intolerance which generally produces diarrhea. Lactose is the sugar in milk. I'm talking about a gluten-like reaction to the dairy protein casein.

"The most common cause of villous atrophy in people with celiac disease is unintentional gluten ingestion. This answer assumes no gluten is being ingested.

Cow dairy can cause an enteropathy similar to celiac disease. It is called Bovine Beta Casein Enteropathy. It acts like celiac disease, causing inflammation leading to villous blunting. The milk protein elicits the antibody reaction just like gluten does in celiac disease." https://glutenfreeworks.com/blog/2021/07/15/bovine-beta-casein-enteropathy-celiac-disease-cause-villous-atrophy/

[Wilsontribe5]

1 minute ago, trents said:

Maybe you should take this slight stomach ache more seriously. And if it's not from gluten it could be from dairy. I'm not talking about lactose intolerance which generally produces diarrhea. Lactose is the sugar in milk. I'm talking about a gluten-like reaction to the dairy protein casein.

"The most common cause of villous atrophy in people with celiac disease is unintentional gluten ingestion. This answer assumes no gluten is being ingested.

Cow dairy can cause an enteropathy similar to celiac disease. It is called Bovine Beta Casein Enteropathy. It acts like celiac disease, causing inflammation leading to villous blunting. The milk protein elicits the antibody reaction just like gluten does in celiac disease." https://glutenfreeworks.com/blog/2021/07/15/bovine-beta-casein-enteropathy-celiac-disease-cause-villous-atrophy/

I see what you're saying but he hasn't had any sort of stomach ache in 2.5 yrs.  He's been 100% asymptomatic for a long time now.    The slight stomach ache was only BEFORE he was diagnosed and was still eating gluten.  If his Endo does show more intestinal damage then we will avoid dairy since I know it can cause more problems.

 

Thanks

[Jackie Garrett]

Hello Wilson

All my symptoms were down to Dairy, I never connected them to Dairy until 52 years later as i always thought Dairy was good for me, it was only by chance that I discovered it was Dairy was when I was consuming a lot more than usual that my symptoms were becoming a lot worse, then I made the connection so I removed Dairy from my diet and Bingo all my life long symptoms disappeared, I just never made the connection, so you see I think a lot of people are having a lot of problems and not making the connection just like me. I am so relieved after all these years to have found the cause. So it could be the Dairy or it might be Gluten and Dairy, there are lots of alternatives out there now. I hope you find out soon.