Thoughts On Test Results

[Thrillrose]

Hi, 

I'm new to all this, my daughter who has just turned one has been given a celiac diagnosis from our paed. I just wanted your thoughts on her test results

 

Tissue Transglutaminase IgA Abs   <1            (<7)

Gliadin (deamidated) IgG Abs            H16       (<7)

Immunoglobulin A (Total IgA)           0.18         (0.08-0.53)

 

So only the 1 test that came back positive. Is this enough for a celiac diagnosis? The paed referred her for an endoscopy but apparently there's quite a wait to get that done, and she even said that I may choose not to do that. The blood tests were done when she was about 10 months.

 

 

I guess I'm concerned about a complete life changing diagnosis being based on one test. Would there be any use in perhaps even repeating the blood tests?

 

Thank you!

 

[ravenwoodglass]

Welcome to the board. Your daughter has a very low total IGA which would account for the negative with the first test you listed. The one test that is positive is one that is very reliable. Try not to think of this as a life changing diagnosis as much as a life saving diagnosis. You are fortunate that she has been diagnosed while so young though it probably doesn't feel that way right now. Read as much as you can here and ask any questions you need to ask. Do be sure to test yourself and other family members even if you don't seem to have symptoms. 

[Thrillrose]

Welcome to the board. Your daughter has a very low total IGA which would account for the negative with the first test you listed. The one test that is positive is one that is very reliable. Try not to think of this as a life changing diagnosis as much as a life saving diagnosis. You are fortunate that she has been diagnosed while so young though it probably doesn't feel that way right now. Read as much as you can here and ask any questions you need to ask. Do be sure to test yourself and other family members even if you don't seem to have symptoms. 

 Oh really? I didn't know that (about being the most reliable test), thank you. I've been tested and was negative. I'm about to make appointments for my other children to get the blood tests done too.

[SMRI]

Welcome to the board. Your daughter has a very low total IGA which would account for the negative with the first test you listed. The one test that is positive is one that is very reliable. Try not to think of this as a life changing diagnosis as much as a life saving diagnosis. You are fortunate that she has been diagnosed while so young though it probably doesn't feel that way right now. Read as much as you can here and ask any questions you need to ask. Do be sure to test yourself and other family members even if you don't seem to have symptoms. 

 

Maybe I'm reading this wrong due to not having enough coffee, but based on the numbers supplied, her daughter's IgA levels are in the normal range.  Also, young children often test on the low side for IgA and then that normalizes as they get a bit older.  I don't see anything out of the ordinary with her total IgA.

 

Thrillrose---with a child that young I think getting a biopsy is important.  When she starts schools, having the positive biopsy will be very important if you need accommodations in school for her.  I'm also wondering if you just got her results back or if you are just now asking questions.  That is a long time to have to wait for results.  What symptoms is your daughter having that prompted the testing?

[ravenwoodglass]

Maybe I'm reading this wrong due to not having enough coffee, but based on the numbers supplied, her daughter's IgA levels are in the normal range.  Also, young children often test on the low side for IgA and then that normalizes as they get a bit older.  I don't see anything out of the ordinary with her total IgA.

 

 

Actually I read it wrong. Your right that her IGA levels are in the normal range although on the low side. 

I do think the positive test is conclusive though. 

The choice on whether to biopsy or not is IMHO up to the OP. If the child's symptoms are impacting her severely and the wait is too long for the biopsy personally I would just get her on the diet. 

[Thrillrose]

Maybe I'm reading this wrong due to not having enough coffee, but based on the numbers supplied, her daughter's IgA levels are in the normal range.  Also, young children often test on the low side for IgA and then that normalizes as they get a bit older.  I don't see anything out of the ordinary with her total IgA.

 

Thrillrose---with a child that young I think getting a biopsy is important.  When she starts schools, having the positive biopsy will be very important if you need accommodations in school for her.  I'm also wondering if you just got her results back or if you are just now asking questions.  That is a long time to have to wait for results.  What symptoms is your daughter having that prompted the testing?

I got the results not long after testing, but I'm headed back to the paed in a couple of weeks so have been looking into the results a bit more in depth. At the time the paed gave a 99% sure this is celiacs. My daughter had been on a gluten-free diet since that day.

I guess it's kid of hard to come to terms with. I have five older children with no obvious digestive issues. There is no celiacs in my family or my husbands. It seems to have come out of the blue.

She was tested due to failure to thrive. She did not put on any weight from 6-10 months. However she was prem and is a very high energy child.

I also worry now that if we do the endoscopy it will be false negative as she will have been gluten free for at least 2-3 months.

[Cara in Boston]

You don't need a positive biopsy to get accommodations in schools, you need a positive diagnosis.  If your doctor is willing to diagnose her based on her blood tests and her (hopefully positive) response to the gluten free diet, then you are all set.  Those two things are enough to be certain, but some doctors hold out for a positive biopsy.  You could also do the endoscopy and not find damage, which will not rule out Celiac.  There could be lots of reasons why damage was not found (it could simply be missed) and already being gluten free will further compromise the results.  

 

When my son was diagnosed it felt like it was also "out of the blue" as no one in my family or my husbands had really ever heard of it.  Turns out that after looking deeper, I suspect several family members had/have it and were just never diagnosed. We also have some other autoimmune disorders in the family . . . I feel like they are all related.

 

I had all the classic symptoms for about 5 years and never considered it to be diet related.  I was seeing several different doctors for a variety of symptoms that all seemed unrelated (cardiac, neurological, GI, etc.)  When my blood test was positive, I gave up gluten and everything resolved itself.  If my son had not been diagnosed, I would have never known.

 

Most importantly:  Is the diet helping your daughter?

[ravenwoodglass]

I got the results not long after testing, but I'm headed back to the paed in a couple of weeks so have been looking into the results a bit more in depth. At the time the paed gave a 99% sure this is celiacs. My daughter had been on a gluten-free diet since that day.

I guess it's kid of hard to come to terms with. I have five older children with no obvious digestive issues. There is no celiacs in my family or my husbands. It seems to have come out of the blue.

She was tested due to failure to thrive. She did not put on any weight from 6-10 months. However she was prem and is a very high energy child.

I also worry now that if we do the endoscopy it will be false negative as she will have been gluten free for at least 2-3 months.

She has to be eating gluten for any further testing for celiac so the endo will be a false negative if she has been gluten free. You could recheck her tests at 6 months gluten free and see if the levels went down but I think her recovery on the diet will help you to deal with the diagnosis.

As Cara mentioned not all celiacs show digestive symptoms. Some will have neuro issues, headaches, mood issues, joint and muscle problems, skin problems etc. 

Since celiac is genetic it does run in families but that doesn't mean people will always get celiac and many celiacs are misdiagnosed. 

Do be sure to read the Newbie topic at the top of the Coping page so you can learn all you need to learn to keep her safe. 

I hope you see improvement in her growth soon. 

[Thrillrose]

Yes the diet does seem to be helping. She has started to put on weight, quite rapidly actually. She was really tiny, below that curve they have in the books, and is now back up on that curve. Her bowel movements have become a lot more regular and are more solid now.

 

So, I guess that's my answer then right? The positive gliadin test and the improvement on the diet means that she does have celiacs. Given her age and the fact she'd need a general anaesthetic to get the endoscopy done I think I will opt out of that.

 

Thank you for your replies, I really appreciate it.

[SMRI]

I got the results not long after testing, but I'm headed back to the paed in a couple of weeks so have been looking into the results a bit more in depth. At the time the paed gave a 99% sure this is celiacs. My daughter had been on a gluten-free diet since that day.

I guess it's kid of hard to come to terms with. I have five older children with no obvious digestive issues. There is no celiacs in my family or my husbands. It seems to have come out of the blue.

She was tested due to failure to thrive. She did not put on any weight from 6-10 months. However she was prem and is a very high energy child.

I also worry now that if we do the endoscopy it will be false negative as she will have been gluten free for at least 2-3 months.

 

If she is already gluten-free, skip the endoscope.

 

You don't need a positive biopsy to get accommodations in schools, you need a positive diagnosis.  If your doctor is willing to diagnose her based on her blood tests and her (hopefully positive) response to the gluten free diet, then you are all set.  Those two things are enough to be certain, but some doctors hold out for a positive biopsy.  You could also do the endoscopy and not find damage, which will not rule out Celiac.  There could be lots of reasons why damage was not found (it could simply be missed) and already being gluten free will further compromise the results.  

 

When my son was diagnosed it felt like it was also "out of the blue" as no one in my family or my husbands had really ever heard of it.  Turns out that after looking deeper, I suspect several family members had/have it and were just never diagnosed. We also have some other autoimmune disorders in the family . . . I feel like they are all related.

 

I had all the classic symptoms for about 5 years and never considered it to be diet related.  I was seeing several different doctors for a variety of symptoms that all seemed unrelated (cardiac, neurological, GI, etc.)  When my blood test was positive, I gave up gluten and everything resolved itself.  If my son had not been diagnosed, I would have never known.

 

Most importantly:  Is the diet helping your daughter?

 

Some schools will NOT do the accommodations without positive tests and endoscope--thanks to all of the "fad" dieters out there.....

 

Yes the diet does seem to be helping. She has started to put on weight, quite rapidly actually. She was really tiny, below that curve they have in the books, and is now back up on that curve. Her bowel movements have become a lot more regular and are more solid now.

 

So, I guess that's my answer then right? The positive gliadin test and the improvement on the diet means that she does have celiacs. Given her age and the fact she'd need a general anaesthetic to get the endoscopy done I think I will opt out of that.

 

Thank you for your replies, I really appreciate it.

 

Sounds like you do have your answer!  Glad to see she is improving in such a short time!

[ravenwoodglass]

 

 

 

Some schools will NOT do the accommodations without positive tests and endoscope--thanks to all of the "fad" dieters out there.....

 

 

 

In this case the doctor has given her a diagnosis. She is under no obligation to tell the school how the doctor arrived at the diagnosis. She just has to show them the paperwork she gets from the doctor saying the child is celiac.