Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Question about child's results


scowt1
Go to solution Solved by trents,

Recommended Posts

scowt1 Rookie

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! 

 

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Solution
trents Grand Master
(edited)

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 by trents
scowt1 Rookie

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 Grand Master
(edited)

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 by trents
Scott Adams Grand Master

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 Rookie
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 Grand Master

"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."


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



scowt1 Rookie
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 Grand Master

Is she freaked about the endoscopy?

RMJ Mentor

How wonderfully supportive to have the whole household gluten free!

Russ H Community Regular

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 Grand Master
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 Rookie

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 Rookie
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 Rookie
2 hours ago, RMJ said:

How wonderfully supportive to have the whole household gluten free!

Thank you!

  • 4 weeks later...
trents Grand Master
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 Rookie

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 Grand Master
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 Grand Master

This article may be helpful:

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,050
    • Most Online (within 30 mins)
      7,748

    MTracy
    Newest Member
    MTracy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Welcome @aperlo34, The transistion to GFD seems scarier than it is.  It took my infant son six months to heal.  Adults take longer, six months to two years to heal the gut.   There are over 200 various symptoms and diseases that result from gluten and the resulting vitamin and mineral deficiencies malabsorption syndrome causes.  Most will go away in time.  I counted nineteen symptoms that improved with gluten free diet.  But it is also tricky, because gluten is found even in products like shampoo.  Read labels.  Be alert to cross contamination. Possibly the cramps in your side is from the withdrawal of gluten.  Gluten activates the opiod receptors and it takes time to clear.  It takes time to heal. Is that vitamin D3 daily?  I need to take 10,000 IU to keep my blood at 80 ng/ml the natural level.  It also help anxiety.   Vitamin D Is Not as Toxic as Was Once Thought Low lithium levels in drinking water can affect anxiety.  Perhaps the increase in mass shootings is because everyone drinks bottled water.  5 mg of Lithium Orotate helped me with impatience to get results. ie. let things go when appropriate.  Lithium in the public water supply and suicide mortality in Texas Deficiency in the B vitamins especially Thiamine Riboflavin, Nicotinic Acid and Pantothenic Acid are common and deficiency can have all kinds of weird effects.  Iodine: Iodine Insufficiency in America: The Neglected Pandemic Vitamin D 10,000 IU (250 mcg) DHEA 100 mg 500 mcg Iodine 10 drops of Liquid Iodine B1 Thiamin 250 mg - Fatigue, irritability, loss of appetite, poor memory, and sleep disturbances, leg cramps.  B2 Riboflavin 100 mg B3 Nicotinic Acid 500 mg B5 Pantothenice Acid 500 mg Vitamin C 500 mg Selenium twice a week 200 mcg Some of the ingredients in your multivitamin can cause problems.  Especially folic acid.  Folic acid supplementation was associated with increased risk of prostate cancer. By contrast, baseline dietary folate was inversely associated with prostate cancer risk. Eat foods low in omega 6 to reduce inflammation.        
    • trents
      Fantastic! Be sure to ask about continuing gluten until the procedure should the GI doc want to do an endoscopy/biopsy. He/she may also want to repeat antibody testing.
    • jjiillee
      Thanks for the replies. They had a cancellation and now she can se the gastroenterologist tomorrow! 
    • Cindy Neshe
      I forgot to say. Some people are allergic to Almonds. If you don’t have that allergy then it should be safe as long as there are no gluten ingredients.
    • Cindy Neshe
      Hi Aussie, I have to apologize “soy” by itself does not contain wheat or gluten like Adam said. Soy can be an allergy in its own for some people. I had soy sauce on my brain when I made that comment. But I do want to say this. I often wonder about the low 20 ppm the govt allows in food. It’s low but for some people this might be an issue. We don’t really know enough yet of what gluten really does to us. Does it stay in our gut and build up over time? It’s perplexing. 
×
×
  • Create New...