Diagnosis question

[Squalls]

Hi all!  I joined because our 15 year old has been having major stomach problems for over a year (constipation issues from birth).  She is majorly deficient in several areas (vitamin D, iron being the biggest two) and just spent a 10 days throwing up every single time she tried to eat.  They did several tests but her Ttg-IgG was 16.  They have referred her to a GI doc for an endoscopy.  But after seeing and reading other numbers, that doesn’t seem super high.  What is the likelihood that she has celiac versus just a gluten sensitivity?  Or are those numbers even relative to determining that?  

[trents]

NCGS (Non Celiac Gluten Sensitivity) should not elevate the tTG-IGA since it does not damage the villi as does celiac disease.

It might be helpful to run a full celiac panel run rather than just the tGG-IGA. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

But usually, when the tTG-IGA is even slightly elevated it indicates celiac disease. The endoscopy w/biopsy is considered to be the gold standard of celiac disease diagnosis but sometimes the villi damage is patch and an inexperienced doctor may not sample enough areas to catch the damage. But regardless of whether she has celiac or NCGS the antidote is the same.

[Squalls]

This is so helpful, thank you so much!  

49 minutes ago, trents said:

NCGS (Non Celiac Gluten Sensitivity) should not elevate the tTG-IGA since it does not damage the villi as does celiac disease.

It might be helpful to run a full celiac panel run rather than just the tGG-IGA. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

But usually, when the tTG-IGA is even slightly elevated it indicates celiac disease. The endoscopy w/biopsy is considered to be the gold standard of celiac disease diagnosis but sometimes the villi damage is patch and an inexperienced doctor may not sample enough areas to catch the damage. But regardless of whether she has celiac or NCGS the antidote is the same.

 

[RMJ]

Different labs use different units for the results of the celiac antibody tests.  What was the normal range for your daughter’s test?  Some labs say 0-3, some say 0-19, others use different values. (This does not mean that one lab requires six times as much antibody to be called a positive - the units are different “sizes”).  

Also, antibody levels don’t necessarily correlate with the degree of damage to the intestines.

[Squalls]

43 minutes ago, RMJ said:

Different labs use different units for the results of the celiac antibody tests.  What was the normal range for your daughter’s test?  Some labs say 0-3, some say 0-19, others use different values. (This does not mean that one lab requires six times as much antibody to be called a positive - the units are different “sizes”).  

Also, antibody levels don’t necessarily correlate with the degree of damage to the intestines.

Thanks for your reply!
The reference range said 0-5.  

 

[RMJ]

24 minutes ago, Squalls said:

Thanks for your reply!
The reference range said 0-5.  

 

I’d call 16 a positive, not a weak or borderline positive. I hope you get definitive answers from the endoscopy.

[Squalls]

4 minutes ago, RMJ said:

I’d call 16 a positive, not a weak or borderline positive. I hope you get definitive answers from the endoscopy.

Thank you so much.  I feel so lost and have so many questions, so this is helpful.  Thanks so much! 

[GodsGal]

2 hours ago, Squalls said:

Thank you so much.  I feel so lost and have so many questions, so this is helpful.  Thanks so much! 

Hi Squalls,

First off, I just want to say that your daughter is blessed to have a supportive parent like you. It is going to be a roller coaster ride. The first little while can be a bit overwhelming. You have found a good "community" here. 

Don't eliminate gluten until all testing is done. When you do start to eliminate gluten, you will need to look for it in some pretty crazy places. Soaps, shampoo, conditioner, lotions, cosmetics, detergents, pet food, toothpaste, medications, vitamins, and envelopes that you have to lick to seal can be problematic.

This is going to have a significant impact on your whole family. Do you know any other people with celiac in your area that you can talk to? This website is great. But, physically having someone to talk to is important as well. 

Some people have no problem giving up gluten. Other people really struggle. (I myself cried many tears.) I found it really helped me to talk with a counselor.

 

[Squalls]

5 hours ago, RMJ said:

I’d call 16 a positive, not a weak or borderline positive. I hope you get definitive answers from the endoscopy.

Thank you so much.  I feel so lost and have so many questions, so this is helpful.  Th

 

2 hours ago, GodsGal said:

Hi Squalls,

First off, I just want to say that your daughter is blessed to have a supportive parent like you. It is going to be a roller coaster ride. The first little while can be a bit overwhelming. You have found a good "community" here. 

Don't eliminate gluten until all testing is done. When you do start to eliminate gluten, you will need to look for it in some pretty crazy places. Soaps, shampoo, conditioner, lotions, cosmetics, detergents, pet food, toothpaste, medications, vitamins, and envelopes that you have to lick to seal can be problematic.

This is going to have a significant impact on your whole family. Do you know any other people with celiac in your area that you can talk to? This website is great. But, physically having someone to talk to is important as well. 

Some people have no problem giving up gluten. Other people really struggle. (I myself cried many tears.) I found it really helped me to talk with a counselor.

 

Thank you from the bottom of my heart, that means so much to me.

My Dad is a family practitioner that just retired and Mom is an RN but they didn’t receive a ton of training on celiac so have been able to explain a little, enough that I have a working knowledge of what it is, but not a ton of understanding of the numbers and what the labs indicated.  I have reached out to several friends who have gluten sensitivities.  I don’t know if anyone directly with actual celiac though.  I have gotten a few names of friend’s friends that said they would be more than happy to talk to us though which is a huge blessing!

My daughter eats a TON of gluten.  Her favorite comfort foods are pasta and bread. So there has already been a lot of grieving at even the thought of eliminating it.

She is an incredible athlete though, and has really struggled the last couple of years with fatigue, headaches, joint pain and even some depression, which was super out of the blue and not like her personality (we got her counseling and chalked it up to a really hard year for the world and possibly her vitamin D deficiency playing some role in it too), but after talking to a few, it sounds like she is going to feel SO much better after we eliminate it!    So as hard as it’s going to be, I am just SO thankful there is an answer.  Now to just figure out how to get a strong-willed, wants to be super independent teen to make wise food choices! 🥴😣

Thank you again so much for your reply and kindness.  

[trents]

I'm glad I'm not raising teenagers anymore!

[GodsGal]

2 hours ago, Squalls said:

Thank you so much.  I feel so lost and have so many questions, so this is helpful.  Th

 

Thank you from the bottom of my heart, that means so much to me.

My Dad is a family practitioner that just retired and Mom is an RN but they didn’t receive a ton of training on celiac so have been able to explain a little, enough that I have a working knowledge of what it is, but not a ton of understanding of the numbers and what the labs indicated.  I have reached out to several friends who have gluten sensitivities.  I don’t know if anyone directly with actual celiac though.  I have gotten a few names of friend’s friends that said they would be more than happy to talk to us though which is a huge blessing!

My daughter eats a TON of gluten.  Her favorite comfort foods are pasta and bread. So there has already been a lot of grieving at even the thought of eliminating it.

She is an incredible athlete though, and has really struggled the last couple of years with fatigue, headaches, joint pain and even some depression, which was super out of the blue and not like her personality (we got her counseling and chalked it up to a really hard year for the world and possibly her vitamin D deficiency playing some role in it too), but after talking to a few, it sounds like she is going to feel SO much better after we eliminate it!    So as hard as it’s going to be, I am just SO thankful there is an answer.  Now to just figure out how to get a strong-willed, wants to be super independent teen to make wise food choices! 🥴😣

Thank you again so much for your reply and kindness.  

I am glad that you are finding people to connect with! That will be super helpful. It sounds like you are making a good start. 

One thing that I think was helpful for me was that the last several weeks before my endoscopy, I allowed myself to eat all those things that I knew I would miss. It was kind of like a "chance to say goodbye." 

In the long run, being strong-willed will be quite an asset for her. Once she is on board with being gluten free, she will have the strength she will need to make the right choices. 

It's going to be challenging. But you can do this.

[Squalls]

13 hours ago, GodsGal said:

I am glad that you are finding people to connect with! That will be super helpful. It sounds like you are making a good start. 

One thing that I think was helpful for me was that the last several weeks before my endoscopy, I allowed myself to eat all those things that I knew I would miss. It was kind of like a "chance to say goodbye." 

In the long run, being strong-willed will be quite an asset for her. Once she is on board with being gluten free, she will have the strength she will need to make the right choices. 

It's going to be challenging. But you can do this.

Thank you so much!  Such amazing insight. I can’t tell you how much I appreciate your encouragement!  

[GodsGal]

1 hour ago, Squalls said:

Thank you so much!  Such amazing insight. I can’t tell you how much I appreciate your encouragement!  

You are very welcome. I believe that we need each other. 🙂 

Social gatherings are often difficult for people with celiac. There is often a good bit of awkwardness, and it can feel very isolating. She's going to need your support. She may not say it.

Also, is your family all going gluten free? 

[Squalls]

15 hours ago, GodsGal said:

I am glad that you are finding people to connect with! That will be super helpful. It sounds like you are making a good start. 

One thing that I think was helpful for me was that the last several weeks before my endoscopy, I allowed myself to eat all those things that I knew I would miss. It was kind of like a "chance to say goodbye." 

In the long run, being strong-willed will be quite an asset for her. Once she is on board with being gluten free, she will have the strength she will need to make the right choices. 

It's going to be challenging. But you can do this.

Thank you so much!  Such amazing insight. I can’t tell you how much I appreciate y

 

2 minutes ago, GodsGal said:

You are very welcome. I believe that we need each other. 🙂 

Social gatherings are often difficult for people with celiac. There is often a good bit of awkwardness, and it can feel very isolating. She's going to need your support. She may not say it.

Also, is your family all going gluten free? 

I believe that too!  Community has always been so important to me, but this is next level and the kindness of strangers is blowing me away!  So thank you again!

That is one of the biggest things I am worried about for her.  She, like most teens, doesn’t want to be other or different, so I am worried she will just continue to eat what she wants/is easiest or just not eat.  We are going to transition to gluten free in our home.  We have 4 kids, she is our oldest, and our boys are pretty picky eaters already, so it may be a big challenge, but I have already determined I am going to go gluten-free with her.  I don’t want her to feel alone.  

[GodsGal]

3 minutes ago, Squalls said:

Thank you so much!  Such amazing insight. I can’t tell you how much I appreciate y

 

I believe that too!  Community has always been so important to me, but this is next level and the kindness of strangers is blowing me away!  So thank you again!

That is one of the biggest things I am worried about for her.  She, like most teens, doesn’t want to be other or different, so I am worried she will just continue to eat what she wants/is easiest or just not eat.  We are going to transition to gluten free in our home.  We have 4 kids, she is our oldest, and our boys are pretty picky eaters already, so it may be a big challenge, but I have already determined I am going to go gluten-free with her.  I don’t want her to feel alone.  

I think that it is a good idea that she won't be the only one going gluten free.