Equivocal IgA Ttg and positive anti endomysial antibody

[MidnightEagle]

Hi everyone. I'm new here for my 9 year old son. A bit of background. He was diagnosed with oral crohns about a year ago and has been under the dental hospital. They did some blood tests which showed his liver ALT was elevated at about 100. He was referred to gastroenterology and ALT still about the same when they repeated the bloods. So he has been referred for liver ultrasound and full.liver bloods. Anyway, I requested copies of all the blood tests (they didn't tell me initially what level his ALT was). In amongst the March bloods he had done by the dental hospital was a coeliac test which had the results IgA ttg 5.9 ( reference; under 4 normal, 4-10 equivocal and over 10 positive) and anti endomysial antibody positive. This,  wasn't mentioned at all when we seen gastroenterology. I know the IgA ttg bit is low so does that mean it isn't significant? I can't see the test has been repeated when be had repeat bloods in July but I do remember then asking if was still eating gluten when we did them in July. Confused, worried Mum. Thank you for any help. 

[trents]

"Mum" you must be in the U.K. as eveidenced also by your spelling of "coeliac".  Unfortunately, your healthcare system protocols don't allow for in depth celiac disease antibody testing, at least not in the initial screening. One test that should have been run but probably wasn't was the "total serum IGA". If that is low, it can lower some other tests scores that are specifically designed to detect celiac disease, such as the IGA-tTG and the endomysial antibody.

About 18% of celiacs have elevated liver enzymes. That is what eventually led to my celiac diagnosis over a period of 13 years.

Although the IGA-tTG is barely positive, the positive endomysial antibody probably seals the deal for having celiac disease since it is a less sensitive test than the IGA-tTG and was still positive.

"March"? Did you mean to type "Marsh"? This is a scale used to measure the level of damage done by celiac disease to the small bowel villous lining. It is not a blood test. It involves an upper GI scoping with a biopsy of the small bowel lining. This is considered the gold standard for celiac disease testing. If the endoscopy/biospy is still pending your son would need to continue to eat regular amounts of gluten until that is done. Did the doctor mention wanting to do this procedure to you?

Edited August 30, 2023 by trents

[MidnightEagle]

53 minutes ago, trents said:

"Mum" you must be in the U.K. as eveidenced also by your spelling of "coeliac".  Unfortunately, your healthcare system protocols don't allow for in depth celiac disease antibody testing, at least not in the initial screening. One test that should have been run but probably wasn't was the "total serum IGA". If that is low, it can lower some other tests scores that are specifically designed to detect celiac disease, such as the IGA-tTG and the endomysial antibody.

About 18% of celiacs have elevated liver enzymes. That is what eventually led to my celiac diagnosis over a period of 13 years.

Although the IGA-tTG is barely positive, the positive endomysial antibody probably seals the deal for having celiac disease since it is a less sensitive test than the IGA-tTG and was still positive.

"March"? Did you mean to type "Marsh"? This is a scale used to measure the level of damage done by celiac disease to the small bowel villous lining. It is not a blood test. It involves an upper GI scoping with a biopsy of the small bowel lining. This is considered the gold standard for celiac disease testing. If the endoscopy/biospy is still pending your son would need to continue to eat regular amounts of gluten until that is done. Did the doctor mention wanting to do this procedure to you?

Hi. Thank you for replying. Yes, I am from the UK. Sorry, I should have added that. I can't see a result for Total IgA so I'm assuming it wasn't checked. I think immunoglobulin are included in the liver specific panel that we are waiting for the results from. 

Sorry, I meant March as in the month. That was when this coeliac test result was from. He had more bloods in July two weeks before we seem gastroenterology. I can't see a coeliac result in those but they asked if he was still eating gluten when we booked the appt so I thought it was being tested.

The consultant only spoke about the elevated liver enzymes and need for further investigation of that. Because he has the oral crohns we spoke about bowel issues and that he has been getting occasional tummy aches and blood in stool. She mentioned the possibility of doing scopes and biopsies with regards to checking for crohns but wanted him to try stool softeners first to rule out constipation. 

There was no mention at all about coeliac disease. So I suppose I'm wondering if they maybe checked it again in July bloods and it came back negative. If so, should I still push for further investigation? I will hopefully speak to them soon about whether the liver investigations showed anything. 

 

[trents]

The IGA-tTG and the endomysal are both celiac disease tests and were positive.

I'm not a doctor but on this forum we are exposed to a lot of medical information. One thing we see is a lot of misdiagnosis with regard to bowel diseases. People are often misdiagnosed with IBS and Crohn's and finally some doctor starts running celiac tests and it turns out the real problem was celiac disease. If the possibility of celiac disease is not on your physicians' radar, despite two celiac disease antibody tests being positive then I would certainly push for more celiac disease testing. There are a number of blood antibody tests fro celiac disease that could have been run but weren't. And then there is the additional evidence of possible celiac disease from the elevated liver enzyme.

 

[MidnightEagle]

3 hours ago, trents said:

The IGA-tTG and the endomysal are both celiac disease tests and were positive.

I'm not a doctor but on this forum we are exposed to a lot of medical information. One thing we see is a lot of misdiagnosis with regard to bowel diseases. People are often misdiagnosed with IBS and Crohn's and finally some doctor starts running celiac tests and it turns out the real problem was celiac disease. If the possibility of celiac disease is not on your physicians' radar, despite two celiac disease antibody tests being positive then I would certainly push for more celiac disease testing. There are a number of blood antibody tests fro celiac disease that could have been run but weren't. And then there is the additional evidence of possible celiac disease from the elevated liver enzyme.

 

Thank you. I will definitely follow it up with the gastroenterology doctor