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Testing Question


bugstabber

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bugstabber Rookie

Hi, I've been lurking for months and months. Thanks for all the wonderful information that I've gleaned from this website/forums. It's been most helpful!

I'm going to skip the long story of how I've gotten here, (at least for now!) and just ask a quick question or two.

When I received my test results back, I discovered that she had only ordered two tests. They are listed under AMRL on the resport, the first being Endomysial Ab, and secondly IgA Total.

Are these correct celiac tests? I have the lab ranges here in front of me, but if you had those two tests, what are your lab's ranges? I'm really having trouble making sense of this.

Thanks so much!


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little d Enthusiast

Welcome Bugstabber,

Don't give up someone will tell you how to read your results, the floodgates are about to open. Oh sorry no pun intended!!!

Donna

bugstabber Rookie
Welcome Bugstabber,

Don't give up someone will tell you how to read your results, the floodgates are about to open. Oh sorry no pun intended!!!

Donna

Thanks for the welcome, Donna!

nora-n Rookie

The endomysial antibodies are considered the most specific blood tests...meaning they probably first will be positive after all the villi are gone....

(someone posted here that her daughter was positive but had only slight damage)

Ypu still need the others, the Ttg tests, and the antigliandin tests. Preferrably both the IgA and IgG variants. Some only are positive on one of them.

The total IgA is jsut to see if you have a IgA defieciency in general. It says nothing about celiac.

There are lists of the tests for celiac somewhere on the net, I hope someone posts the links.

Also, there are gene tests.

What are your symptoms? Any family members diagnosed? Any autoimmune disorders? Hashimoto's? Low vitwmin D, calcium, iron, potassium? high liver numbers?

nora

bugstabber Rookie
The endomysial antibodies are considered the most specific blood tests...meaning they probably first will be positive after all the villi are gone....

(someone posted here that her daughter was positive but had only slight damage)

Ypu still need the others, the Ttg tests, and the antigliandin tests. Preferrably both the IgA and IgG variants. Some only are positive on one of them.

The total IgA is jsut to see if you have a IgA defieciency in general. It says nothing about celiac.

There are lists of the tests for celiac somewhere on the net, I hope someone posts the links.

Also, there are gene tests.

What are your symptoms? Any family members diagnosed? Any autoimmune disorders? Hashimoto's? Low vitwmin D, calcium, iron, potassium? high liver numbers?

nora

I get constipated, with mucus, never diarrhea. Brain fog, low B12, had low potassium (due to BP meds), did I say brain fog? I had a floating poo the other day, hadn't seen that before. I am hypothyroid (she won't test me for hashi). If I eat gluten now, after not eating it for months, I get a stomach ache. I was really sensitive to loud noises, but that's better now. I have regular old arthritis in my basal thumb joints, (double jointed) and some in the fingers too. I don't know of other family members with it. I'm sure I'm forgetting something. Oh- and BLOATING! How could I forget that?

Thanks for reading.

mftnchn Explorer
I get constipated, with mucus, never diarrhea. Brain fog, low B12, had low potassium (due to BP meds), did I say brain fog? I had a floating poo the other day, hadn't seen that before. I am hypothyroid (she won't test me for hashi). If I eat gluten now, after not eating it for months, I get a stomach ache. I was really sensitive to loud noises, but that's better now. I have regular old arthritis in my basal thumb joints, (double jointed) and some in the fingers too. I don't know of other family members with it. I'm sure I'm forgetting something. Oh- and BLOATING! How could I forget that?

Thanks for reading.

Probably if you have been without gluten your tests wouldn't show too much. These symptoms seem similar to a lot of people on this forum.

Chris E Rookie
The endomysial antibodies are considered the most specific blood tests...meaning they probably first will be positive after all the villi are gone....

(someone posted here that her daughter was positive but had only slight damage)

Ypu still need the others, the Ttg tests, and the antigliandin tests. Preferrably both the IgA and IgG variants. Some only are positive on one of them.

The total IgA is jsut to see if you have a IgA defieciency in general. It says nothing about celiac.

There are lists of the tests for celiac somewhere on the net, I hope someone posts the links.

Also, there are gene tests.

What are your symptoms? Any family members diagnosed? Any autoimmune disorders? Hashimoto's? Low vitwmin D, calcium, iron, potassium? high liver numbers?

nora

Are elevated liver function numbers signs of celiac disease. I have been having symptoms for nealry a year now, but have twice had negative blood work. The only tests that have came back positive are elevated liver enzymes (always come back high) and a white cell scan highlighting possible inflammation of the small intestine. Any ideas any1?


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mftnchn Explorer
Are elevated liver function numbers signs of celiac disease. I have been having symptoms for nearly a year now, but have twice had negative blood work. The only tests that have came back positive are elevated liver enzymes (always come back high) and a white cell scan highlighting possible inflammation of the small intestine. Any ideas any1?

Hi, what blood work was negative? Elevated liver enzymes are not specific for celiac, but do indicate stress on the liver which could be from a number of sources. Are you taking any medications that might cause that?

Chris E Rookie
Hi, what blood work was negative? Elevated liver enzymes are not specific for celiac, but do indicate stress on the liver which could be from a number of sources. Are you taking any medications that might cause that?

Sorry i don't actually kno what bloody work was negative, all i know is that i have been tested for celiac twice and i have been told that the bloody was ok. I don't take any medication at all yet always have high liver enzymes of a certain type although the doctors say it could be related to the GI saymptoms i have been having for the last year (which are exctremely similar to those i read here). I have recently been referred to a small bowel expert and am currently waiting for an appointment. Do you think i coul still have celiac even though the blood is negative?

Chris

bugstabber Rookie
The endomysial antibodies are considered the most specific blood tests...meaning they probably first will be positive after all the villi are gone....

(someone posted here that her daughter was positive but had only slight damage)

Ypu still need the others, the Ttg tests, and the antigliandin tests. Preferrably both the IgA and IgG variants. Some only are positive on one of them.

The total IgA is jsut to see if you have a IgA defieciency in general. It says nothing about celiac.

There are lists of the tests for celiac somewhere on the net, I hope someone posts the links.

Also, there are gene tests.

What are your symptoms? Any family members diagnosed? Any autoimmune disorders? Hashimoto's? Low vitwmin D, calcium, iron, potassium? high liver numbers?

nora

thanks for the help

aikiducky Apprentice

Chris, yes you can be celiac and have negative blood tests. A small bowel biopsy might show what damage there is to your intestine in that case.

Pauliina

Chris E Rookie
Chris, yes you can be celiac and have negative blood tests. A small bowel biopsy might show what damage there is to your intestine in that case.

Pauliina

Thanks for that Pauliina!

I have been unwell with whatever it is for nearlya year now and i am still really no further forward. Had blood tests for everything and anyhting. My symptoms seem extrememly likely to celiac...... including bone pain, tinling down the legs, tiredness. This past year has driven me crazy and i hope to get to the bottom of it soon. Do you think the white cell scan highlighting inflammation of the small intestine could be celiac? Would the barium swallow not have highlighted this?????

Sorry to ask so mnay questions!

Chris

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    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      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--and you are above that level. 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: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
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