Test results comparison?

[Belinda Beynon]

Hi again,

I tried to edit my first post but couldn’t work out how. So I am starting again!

for those who have had similar levels to me (below)…….

if I have a tTG IgA of 20 (ref <7)

and a dog igG of 8 (ref <7)

with a normal IgA

what are people experiences with their biopsies?

I don’t know when my biopsy will be scheduled and I am doing my head in, wanting to believe that I have found the answer to all my issues. 
and of course KNOWING that I have to keep eating gluten pending the test (HELLOOO crumpets!).

to the smart ones…..is it likely I have my answer based on these???

[Jill Robinson]

28 minutes ago, Belinda Beynon said:

Hi again,

I tried to edit my first post but couldn’t work out how. So I am starting again!

for those who have had similar levels to me (below)…….

if I have a tTG IgA of 20 (ref <7)

and a dog igG of 8 (ref <7)

with a normal IgA

what are people experiences with their biopsies?

I don’t know when my biopsy will be scheduled and I am doing my head in, wanting to believe that I have found the answer to all my issues. 
and of course KNOWING that I have to keep eating gluten pending the test (HELLOOO crumpets!).

to the smart ones…..is it likely I have my answer based on these???

I don’t know anything about the blood test. I did get biopsy twice it did not show celiacs! My young nurse practitioner wanted me to do a stool test. I did and it showed as gluten intolerant! Which he said that he felt I had celiac! I stopped eaten gluten and got better. I think my personal opinion is that the stool test is the way to go! Yes it gross but it worked for me. You can get you primary care to get you a kit. None of my Doctors offered to test my blood. Don’t get a stool test on line I’ve heard the are not accurate. My story Good Luck Be patient it’s hard I know! But do the biopsy in case it’s something else. 

[trents]

Belinda, your numbers are barely positive but they do suggest celiac disease. By chance, when the blood test was done, had you already started cutting back on gluten?

Jill, there are two medical diseases that involve a reaction to gluten. One is known as celiac disease. There are two common tests that are used to diagnose celiac disease. One is a blood antibody test. The other is an endoscopy with a biopsy of the small bowel lining. There is also a stool test but it is not commonly used at all anymore.

The other gluten-related medical disorder is known as NCGS (Non Celiac Gluten Sensitivity) for which there is no test. If someone is experiencing celiac disease-like symptoms but the tests for celiac disease are proving to be negative, then the conclusion is NCGS. To get an NCGS diagnosis you must first rule out celiac disease.

Many of the symptoms are similar for both conditions and the antidote is the same, total abstinence from gluten for life. The difference between the two diseases diseases is that celiac disease damages the lining of the small bowel (the "villi") but NCGS does not.

[Belinda Beynon]

1 hour ago, Jill Robinson said:

I don’t know anything about the blood test. I did get biopsy twice it did not show celiacs! My young nurse practitioner wanted me to do a stool test. I did and it showed as gluten intolerant! Which he said that he felt I had celiac! I stopped eaten gluten and got better. I think my personal opinion is that the stool test is the way to go! Yes it gross but it worked for me. You can get you primary care to get you a kit. None of my Doctors offered to test my blood. Don’t get a stool test on line I’ve heard the are not accurate. My story Good Luck Be patient it’s hard I know! But do the biopsy in case it’s something else. 

 

25 minutes ago, trents said:

Belinda, your numbers are barely positive but they do suggest celiac disease. By chance, when the blood test was done, had you already started cutting back on gluten?

Jill, there are two medical diseases that involve a reaction to gluten. One is known as celiac disease. There are two common tests that are used to diagnose celiac disease. One is a blood antibody test. The other is an endoscopy with a biopsy of the small bowel lining. There is also a stool test but it is not commonly used at all anymore.

The other gluten-related medical disorder is known as NCGS (Non Celiac Gluten Sensitivity) for which there is no test. If someone is experiencing celiac disease-like symptoms but the tests for celiac disease are proving to be negative, then the conclusion is NCGS. To get an NCGS diagnosis you must first rule out celiac disease.

Many of the symptoms are similar for both conditions and the antidote is the same, total abstinence from gluten for life. The difference between the two diseases diseases is that celiac disease damages the lining of the small bowel (the "villi") but NCGS does not.

Thanks Trent,

I hadn’t deliberately cut back on gluten prior to the test, but was no longer eating much bread product due to attempted weight loss. So I would say that I was probably ingesting much less than I used to, yes. 

[Wheatwacked]

1 hour ago, Jill Robinson said:

I stopped eaten gluten and got better.

Ask for a vitamin D blood test.  

Possible Role of Vitamin D in Celiac Disease Onset

[trents]

48 minutes ago, Belinda Beynon said:

 

Thanks Trent,

I hadn’t deliberately cut back on gluten prior to the test, but was no longer eating much bread product due to attempted weight loss. So I would say that I was probably ingesting much less than I used to, yes. 

Had you been eating more gluten I expect your test numbers would have been higher.

[Jill Robinson]

On 3/24/2022 at 5:32 PM, trents said:

Belinda, your numbers are barely positive but they do suggest celiac disease. By chance, when the blood test was done, had you already started cutting back on gluten?

Jill, there are two medical diseases that involve a reaction to gluten. One is known as celiac disease. There are two common tests that are used to diagnose celiac disease. One is a blood antibody test. The other is an endoscopy with a biopsy of the small bowel lining. There is also a stool test but it is not commonly used at all anymore.

The other gluten-related medical disorder is known as NCGS (Non Celiac Gluten Sensitivity) for which there is no test. If someone is experiencing celiac disease-like symptoms but the tests for celiac disease are proving to be negative, then the conclusion is NCGS. To get an NCGS diagnosis you must first rule out celiac disease.

Many of the symptoms are similar for both conditions and the antidote is the same, total abstinence from gluten for life. The difference between the two diseases diseases is that celiac disease damages the lining of the small bowel (the "villi") but NCGS 

Expand  

I am aware! Besides how else do you get the biopsy if not endoscopic? My stool test was done two years ago, so you can still get it done.  

[trents]

1 hour ago, Jill Robinson said:

I am aware! Besides how else do you get the biopsy if not endoscopic? My stool test was done two years ago, so you can still get it done.  

It wasn't clear to me if you were saying your were diagnosed with celiac disease from the stool test or NCGS since you used the term "gluten intolerant" which can be used for either. And you also said the nurse practitioner opined that you had celiac disease, even though you had two negative biopsies. And the fact that you feel better after cutting out gluten doesn't distinguish between celiac disease and NCGS because going gluten-free is the antidote for both and you would feel better in either case. Were you  trying to say that you think the stool test is a better diagnostic test for celiac disease since it proved you have it even though you had two negative biopsies? Your post was just confusing to me, that's all, and it made me wonder if you knew the difference between celiac disease and NCGS. I'm sorry if I came across as condescending.

[Belinda Beynon]

7 hours ago, trents said:

It wasn't clear to me if you were saying your were diagnosed with celiac disease from the stool test or NCGS since you used the term "gluten intolerant" which can be used for either. And you also said the nurse practitioner opined that you had celiac disease, even though you had two negative biopsies. And the fact that you feel better after cutting out gluten doesn't distinguish between celiac disease and NCGS because going gluten-free is the antidote for both and you would feel better in either case. Were you  trying to say that you think the stool test is a better diagnostic test for celiac disease since it proved you have it even though you had two negative biopsies? Your post was just confusing to me, that's all, and it made me wonder if you knew the difference between celiac disease and NCGS. I'm sorry if I came across as condescending.

You didn’t sound condescending and I hope Jill didn’t feel that,way

[Jill Robinson]

2 hours ago, Belinda Beynon said:

You didn’t sound condescending and I hope Jill didn’t feel that,way

I’m using my phone not desktop! Telling my story is not as easy! My PA said celiac b/c of my symptoms which he was well aware of and my stool test! As if I have celiac or Ncgs I’m not sure it matters the treatment is the same! It’s been two years since he told my! After seeing GI Doctors for fifteen years one said I had gerds I kept seeing him, every time I went to him with my stomach hurting he said take more Nexium the other three GI said I didn’t have reflux! This was after endoscopic each time! I have had so many I could do it in my sleep! Lol easy since they knock you out to do it! Sorry thought that was funny! The Gi Doctors here are old we need some new ones I guess! The many biopsy were negative which I have read can happen so I believe the stool test is most likely more accurate when Doctors can’t figure out what’s going on! My dad was miserable with his stomach most of my life, after many test and Mayo Clinic still no answers, no stool test which is a shame! Sad thing is he was a Doctor had no idea what was going on! He retired early b/c of his misery back then celiac was not well known! It’s inherited so I feel I have it and my sister too. Don’t know if she has been test but she said she had IBS!  No she doesn’t talk to me much! My dads siblings all had stomach issues so I’m doing the gluten free and going with celiac cause it’s working for me! Sorry for any confusion! Less Nexium now! Almost none! 

[trents]

18 minutes ago, Jill Robinson said:

I’m using my phone not desktop! Telling my story is not as easy! My PA said celiac b/c of my symptoms which he was well aware of and my stool test! As if I have celiac or Ncgs I’m not sure it matters the treatment is the same! It’s been two years since he told my! After seeing GI Doctors for fifteen years one said I had gerds I kept seeing him, every time I went to him with my stomach hurting he said take more Nexium the other three GI said I didn’t have reflux! This was after endoscopic each time! I have had so many I could do it in my sleep! Lol easy since they knock you out to do it! Sorry thought that was funny! The Gi Doctors here are old we need some new ones I guess! The many biopsy were negative which I have read can happen so I believe the stool test is most likely more accurate when Doctors can’t figure out what’s going on! My dad was miserable with his stomach most of my life, after many test and Mayo Clinic still no answers, no stool test which is a shame! Sad thing is he was a Doctor had no idea what was going on! He retired early b/c of his misery back then celiac was not well known! It’s inherited so I feel I have it and my sister too. Don’t know if she has been test but she said she had IBS!  No she doesn’t talk to me much! My dads siblings all had stomach issues so I’m doing the gluten free and going with celiac cause it’s working for me! Sorry for any confusion! Less Nexium now! Almost none! 

Yes, typing on a cell phone makes it difficult to be clear sometimes.

Since there is no test for NCGS I would presume the positive stool test means you have celiac disease, despite the negative biopsies. Sometimes we do get reports from posters of that happening. Perhaps the biopsies were taken at an early stage of the disease process before there was much discernible damage to the villi or perhaps the damage was patchy and missed. It is unfortunate that none of your doctors knew enough to order an antibody blood test. But as you say, the antidote is the same.

[Scott Adams]

18 hours ago, trents said:

Belinda, your numbers are barely positive but they do suggest celiac disease.

I just want to say that I would describe your results as unequivocally positive, at ~3x the cut off range for celiac disease on your tTG results:  tTG IgA of 20 (ref <7).

[trents]

1 hour ago, Scott Adams said:

I just want to say that I would describe your results as unequivocally positive, at ~3x the cut off range for celiac disease on your tTG results:  tTG IgA of 20 (ref <7).

Scott is right. Your numbers are not high but solidly positive. I was wrong in saying "barely positive" but we not uncommonly get reports on this forum of people with numbers 10-15x normal.

[Belinda Beynon]

2 hours ago, Scott Adams said:

I just want to say that I would describe your results as unequivocally positive, at ~3x the cut off range for celiac disease on your tTG results:  tTG IgA of 20 (ref <7).

Thanks Scott, appreciate your input

29 minutes ago, trents said:

Scott is right. Your numbers are not high but solidly positive. I was wrong in saying "barely positive" but we not uncommonly get reports on this forum of people with numbers 10-15x normal.

Thanks Trent’s, I feel vilified in seeking the blood test from my GP!

[trents]

7 minutes ago, Belinda Beynon said:

Thanks Scott, appreciate your input

Thanks Trent’s, I feel vilified in seeking the blood test from my GP!

Vilified or verified?

[Belinda Beynon]

19 minutes ago, trents said:

Vilified or verified?

ha ha ha verified!

but who knows what they are saying behind my back  

 

[frieze]

Validated..

[Belinda Beynon]

On 3/26/2022 at 6:42 AM, frieze said:

Validated..

That too 🙂