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Just when I was coming to terms with my 5 year olds diagnosis….

Jessica K.
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Jessica K. Rookie
Jessica K.
Posted

Long story short….

My 5 year old was officially diagnosed earlier this week. 
ttg iga > 250

ema 1:320

no biopsy, doctor confirmed based on high numbers + symptoms (which I was in agreement with)

 

My 8 year old has no symptoms but was tested due to the genetic link per doctors recommendation. Her ttg iga came back positive 21.9 (normal is less that 15). I am waiting to hear back from GI on what they would like to do next? Do we do EMA and if it’s positive we skip the biopsy since there is now a family history? Do we skip the EMA and do the biopsy? I will obviously take the doctors recommendations, but any input would be appreciated. 
 

I am so sad about the whole situation. 

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Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum. Could you provide the reference ranges for the blood tests you shared? Each lab is different in how they run such tests.

In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTG-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease.

According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy:

 

Jessica K. Rookie
Jessica K.
Posted
  • Author
18 hours ago, Jessica K. said:

Long story short….

My 5 year old was officially diagnosed earlier this week. 
ttg iga > 250

ema 1:320

no biopsy, doctor confirmed based on high numbers + symptoms (which I was in agreement with)

 

My 8 year old has no symptoms but was tested due to the genetic link per doctors recommendation. Her ttg iga came back positive 21.9 (normal is less that 15). I am waiting to hear back from GI on what they would like to do next? Do we do EMA and if it’s positive we skip the biopsy since there is now a family history? Do we skip the EMA and do the biopsy? I will obviously take the doctors recommendations, but any input would be appreciated. 
 

I am so sad about the whole situation. 


 

 

Under 15 is considered normal for the ttg iga which is the only test my older daughter has had. She was at 21.9. I am very familiar with the research and European model, but I cannot find much research when it comes to sibling diagnosis. If a sibling has Celiac, will they still want the second sibling to meet the criteria (for her it would require the scope because her number was not that elevated) or are they able to confidently diagnose without meeting the standard criteria due to the fact that family history has been established. If that makes sense…

Scott Adams Grand Master
Scott Adams
Posted

Thanks, you mentioned your 5 year old with ttg iga > 250, so I assume they made the diagnosis based on their level being over 10x the cut off for positive. 

As for your daughter, to me it's very likely that she also has it based on her positive test results, and especially the fact that her brother also has it, and it apparently runs in your family. I would not be very keen on having her undergo an endoscopy unless the doctor really pushes for it--it would likely be easier for them both to be on a gluten-free diet than for only one to be on it. 

I'm not sure how much gluten she was eating before her blood test, but it should have been something like 2 slices of wheat bread daily for 6-8 weeks before the test, and if it was much lower than that, the results would likely have been even higher. Be sure she keeps eating gluten daily until all tests are completed.

Jessica K. Rookie
Jessica K.
Posted
  • Author
7 minutes ago, Scott Adams said:

Thanks, you mentioned your 5 year old with ttg iga > 250, so I assume they made the diagnosis based on their level being over 10x the cut off for positive. 

As for your daughter, to me it's very likely that she also has it based on her positive test results, and especially the fact that her brother also has it, and it apparently runs in your family. I would not be very keen on having her undergo an endoscopy unless the doctor really pushes for it--it would likely be easier for them both to be on a gluten-free diet than for only one to be on it. 

I'm not sure how much gluten she was eating before her blood test, but it should have been something like 2 slices of wheat bread daily for 6-8 weeks before the test, and if it was much lower than that, the results would likely have been even higher. Be sure she keeps eating gluten daily until all tests are completed.

Thank you for your insight! My 5 year old daughter was diagnosed based on ttg iga + ema results (no biopsy)- she met the European criteria. I’m just trying to anticipate the route they will go with my 8 year old (she does not meet criteria based on the initial screen/ttg iga level). Thanks!

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