Question about child's results

[scowt1]

My 10-year old has a (decreasing) low body mass so the doctor gave her a blood test. The GI doctor ordered an endoscopy without even reviewing labs (she said she would after our appointment). I assume she didn't want to discuss test minutia when her experience and protocol for a positive result is a biopsy. This effectively shut down the conversation. She's affiliated with the Children's Hospital in our major city and is known to our pediatrician who has worked with her.  We have a month before the procedure though and I have unanswered questions regarding these labs. I would appreciate any feedback based on your experience in the meantime. I'm trying to wrap my head around this all. 

Immunoglobulin A - Normal

Gliadin Ab IgA - Normal

Gliadin Ab IgG - 77 (Less than 15 U/ml normal)

TTG IgA - 55 (Less than 15 U/ml normal)

EMA - Normal

ARA - Normal 

 

Much appreciate any thoughts! 

 

 

[trents]

She probably has celiac disease, judging from the significantly positive tTG-IGA and IgG. One thing to be aware of is that children often don't show damage to the small bowel villi when biopsied even though they do have celiac disease. Their bodies are so resilient. Does she have other symptoms besides weight loss?

Edited May 24, 2023 by trents

[scowt1]

Hi Trents, 

Thank you so much for your quick reply! I feel like this community is going to be essential and very much appreciated as we navigate our child's likely diagnosis. 

Our daughter does not have most GI symptoms, except constipation and gas (explanation below) . She has ADHD and Anxiety and is a picky eater who eats lots of carbs and little fruit and vegetables. While I suspect these diagnoses are correct,  I do wonder if they have been exacerbated by this disease. You might even say I'm a little hopeful that she will get some measure of relief from her anxiety if she goes gluten-free. 

We do have autoimmune diseases like colitis, lupus and rheumatoid arthritis in the family. We used a sperm donor so she has many (many!) half-siblings, which comes in useful for health issues! Several have gluten-sensitivity and one is confirmed for celiac disease. 

You bring up a very salient point about the biopsy that I've also been concerned about after seeing the normal EMA and ARA (if I'm understanding those test correctly).  If the biopsy comes back negative, what would our likely next steps be? 

Thank you so much for your thoughts! Really, really appreciate it. 

[trents]

The EMA is not as sensitive as the tTG-IGA and it is not uncommon for that one to be negative when other antibody tests are positive. However, the EMA is very specific to celiac disease so when it is positive it's a ringer. What is the ARA stand for? That's one I have seen before.

There is also the possibility that she has NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celaic disease. They share many of the same symptoms but NCGS is 10x more common. There are no definitive tests for NCGS. A dx of NCGS is arrived at by the presence of celiac-like symptoms but celiac disease has been ruled out by testing. Total abstinence from gluten is called for in both conditions so at the end of the day it has the same fallout as far as impact on lifestyle. So, if the biopsy is negative for celiac disease then the next logical step would be to put your daughter on a strict gluten-free diet and see if the gas, constipation and weight loss are turned around. By the way, you mention she has ADHD and anxiety. Those are things that can be driven by gluten intolerance/sensitivity. Going gluten free often has a positive impact on mood issues.

You do realize I hope that you should not start her on a gluten-free diet until all testing is done.

Edited May 24, 2023 by trents

[Scott Adams]

Welcome to the forum, and this article has more info on the blood test results. Be sure she keeps eating gluten daily, at least 2 slices of bread, until all testing is completed:

 

[scowt1]

24 minutes ago, trents said:

The EMA is not as sensitive as the tTG-IGA and it is not uncommon for that one to be negative when other antibody tests are positive. However, the EMA is very specific to celiac disease so when it is positive its a ringer. What is the ARA stand for? That's one I have seen before.

There is also the possibility that she has NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celaic disease. They share many of the same symptoms but NCGS is 10x more common. There are no definitive tests for NCGS. A dx of NCGS is arrived at by the presence of celiac-like symptoms but celiac disease has been ruled out by testing. Total abstinence from gluten is called for in both conditions so at the end of the day it has the same fallout as far as impact on lifestyle. So, if the biopsy is negative for celiac disease then the next logical step would be to put your daughter on a strict gluten-free diet and see if the gas, constipation and weight loss are turned around. By the way, you mention she has ADHD and anxiety. Those are things that can be driven by gluten intolerance/sensitivity. Going gluten free often has a positive impact on mood issues.

You do realize I hope that you should not start her on a gluten-free diet until all testing is done.

Hi. The ARA is a Reticulin score looking for Anti-Smooth Music Antibodies, all of which means little to me! What does make sense is what you posit: She may have a non-celiac-gluten-sensitivity or pre-celiac condition and should treat it with a gluten-free diet. I do think a positive biopsy will keep our daughter more compliant, especially as she enters the risk-seeking, teenage years. Thanks for the reminder on continuing to eat gluten. We'll load her up on all the things she loves and probably won't be able to eat anymore (flour tortillas are on the top of the list!). She's our only child, so we'll just become a gluten-free household. Also, I hear you on the ADHD/Anxiety and really do hope it has an effect on her mood. I'm very grateful that our doctor ordered the testing and that we caught while she is young (and especially before puberty). Now I will just fear that she overtakes me in height in record time! 

Thank you so much for your thoughtful answers! 

13 minutes ago, Scott Adams said:

Welcome to the forum, and this article has more info on the blood test results. Be sure she keeps eating gluten daily, at least 2 slices of bread, until all testing is completed:

Thank you so much for the welcome! Appreciate your sending this article and the reminder for eating gluten! 

 

[trents]

"Anti-Smooth Music Antibodies"? Do you mean "smooth muscle antibodies"? The intestines are are classified as smooth muscles.

You certainly would be wise to convert everyone in the household to gluten-free eating. That accomplishes two things. First, it eliminates mishaps where the gluten sensitive individual mistakenly consumes someone else's gluten containing food or where there is accidental cross contamination ("CC" as we call it), and second, it communicates that, "I'm not asking something of you that I'm not willing to do myself."

[scowt1]

9 minutes ago, trents said:

"Anti-Smooth Music Antibodies"? Do you mean "smooth muscle antibodies"? The intestines are are classified as smooth muscles.

You certainly would be wise to convert everyone in the household to gluten-free eating. That accomplishes two things. First, it eliminates mishaps where the gluten sensitive individual mistakenly consumes someone else's gluten containing food or where there is accidental cross contamination ("CC" as we call it), and second, it communicates that, "I'm not asking something of you that I'm not willing to do myself."

I'm glad you agree! Our daughter was also pleased that we would all do it together. So this is what the lab reports says about that test. 

"The presence of Anti-Smooth Muscle Antibody may cause an interference in the detection of ARA. In some patients with celiac disease, ARA test may be negative. In such cases, repeat testing may yield additional positive results. A negative test for ARA does not rule out a diagnosis of Gluten Sensitivity Disease. celiac disease patients on a gluten free diet may have low ARA titers or even be negative. In some patients with celiac disease and IgA deficiency, the IgA class ARA antibodies are absent. However, such patients are usually positive for IgG class ARA". 

[trents]

Is she freaked about the endoscopy?

[RMJ]

How wonderfully supportive to have the whole household gluten free!

[Russ H]

The common blood tests for coeliac disease look for antibodies to an enzyme found in the body called tissue transglutaminase 2 (tTG2) and to a fragment of gluten protein called deamidated gliadin peptide (DGP).  EMA is endomysial antibody, which is basically a crude test for tTG2 - like running a tTG2 test with a high threshold so is less sensitive but more specific for coeliac disease. I don't understand why this test is still used. The symptoms and results are certainly suggestive of coeliac disease. Is there any coeliac disease or other autoimmune disease in the family (type 1 diabetes, rheumatoid arthritis etc.)?

[trents]

14 minutes ago, Russ H said:

The common blood tests for coeliac disease look for antibodies to an enzyme found in the body called tissue transglutaminase 2 (tTG2) and to a fragment of gluten protein called deamidated gliadin peptide (DGP).  EMA is endomysial antibody, which is basically a crude test for tTG2 - like running a tTG2 test with a high threshold so is less sensitive but more specific for coeliac disease. I don't understand why this test is still used. The symptoms and results are certainly suggestive of coeliac disease. Is there any coeliac disease or other autoimmune disease in the family (type 1 diabetes, rheumatoid arthritis etc.)?

From the OP's second post: "We do have autoimmune diseases like colitis, lupus and rheumatoid arthritis in the family. We used a sperm donor so she has many (many!) half-siblings, which comes in useful for health issues! Several have gluten-sensitivity and one is confirmed for celiac disease."

[scowt1]

Thank you for asking! She was scared yesterday but has put it aside for the moment. I think she’ll get nervous right before. The doctor was very direct and open with her which was good. If you have thoughts on the approach, I’m open. She doesn’t like needles (who does?) but she is not phobic and complies as needed. 

[scowt1]

32 minutes ago, Russ H said:

The common blood tests for coeliac disease look for antibodies to an enzyme found in the body called tissue transglutaminase 2 (tTG2) and to a fragment of gluten protein called deamidated gliadin peptide (DGP).  EMA is endomysial antibody, which is basically a crude test for tTG2 - like running a tTG2 test with a high threshold so is less sensitive but more specific for coeliac disease. I don't understand why this test is still used. The symptoms and results are certainly suggestive of coeliac disease. Is there any coeliac disease or other autoimmune disease in the family (type 1 diabetes, rheumatoid arthritis etc.)?

Hi Russ - I know you saw Trents repost of mine on this. But it does also remind me that I should ask the parents of the half-siblings today if they were actually tested for celiac or they just received a default diagnosis of “sensitivity”. These siblings live in the US, UK, Canada, Ireland and Australia so the testing and criteria is likely to vary (I now wonder if in similar or dissimilar ways!). 
 

Thank you!

[scowt1]

2 hours ago, RMJ said:

How wonderfully supportive to have the whole household gluten free!

Thank you!

[trents]

On 5/24/2023 at 5:04 PM, scowt1 said:

Hi Russ - I know you saw Trents repost of mine on this. But it does also remind me that I should ask the parents of the half-siblings today if they were actually tested for celiac or they just received a default diagnosis of “sensitivity”. These siblings live in the US, UK, Canada, Ireland and Australia so the testing and criteria is likely to vary (I now wonder if in similar or dissimilar ways!). 
 

Thank you!

I think the medical community uses the same tests to diagnose celiac disease everywhere in the world. Sometimes the nomenclature deployed is a little different and physicians in some countries have more freedom to the secondary tests while in other places what tests the doc can order is more tightly controlled and minimal. In the UK, for instance, they will only run the centerpiece test, the tTG-IGA. All docs everywhere will run that one at a minimum as it is considered to be the single best test and comparatively inexpensive.

[scowt1]

Hi. 

We received the results this morning from the endoscopy (2 days later) and she does have Celiac Disease. 

Appreciate that we have this forum as a resource! Thank you!

[trents]

20 minutes ago, scowt1 said:

Hi. 

We received the results this morning from the endoscopy (2 days later) and she does have Celiac Disease. 

Appreciate that we have this forum as a resource! Thank you!

It's always good to finally know what you are dealing with.

[Scott Adams]

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