Utterly confused

[Luls]

My main symptom has been absolutely crippling fatigue. I've been back and forth to the GP and had to beg them for blood tests. GP kept saying it was long covid despite never testing positive. To cut some long stories short he eventually checked my TTG levels which came back as 11.0u/ml (< 5 negative, 5-10 equivocal, >10 positive). My EMA also came back positive. GP just told me to cut out gluten for 3 months then phone him back. I challenged this as I know the guidance states you need a biopsy and not to cut out gluten. I argued and argued and got sick of arguing and paid for a private biopsy. The gastroenterologist basically said they disregard the EMA and because my ttg was 11 it's highly unlikely I'm coeliac. Had the biopsies today and he said everything looks normal and he thinks the biopsies will be negative. 

 

Thoughts??

[cristiana]

Hello Lulu and welcome to the forum.

Tell me, were you eating roughly 2 slices of normal (gluten containing) bread or the equivalent for 6-8 weeks before your blood tests?  You will have needed to be doing so to produce a reaction. 

The reason I ask is because sside gluten, I understand there are a few medical conditions that could give a positive TTG reading. 

It is interesting your doctor ran a coeliac test.  Was that because you were anemic (one reason doctors sometimes check) or because you have relatives with coeliac disease?

Cristiana

Edited August 19, 2022 by cristiana

[Luls]

Just now, cristiana said:

Hello Lulu and welcome to the forum.

Tell me, were you eating roughly 2 slices of normal (gluten containing) bread or the equivalent for 6-8 weeks before your blood tests?  You will have needed to be doing so to produce a reaction. 

If, however, habitually you eat very little gluten, it will be very difficult to know where you stand because I I understand there are a few medical conditions that could give a positive TTG reading.   Sorry - I haven't got time to check this just now, but someone else may be able to let you know what these are.

It is interesting your doctor ran a coeliac test.  Was that because you were anaemic (one reason doctors sometimes check) or because you have relatives with coeliac disease?

Cristiana

Hi! Thank you for replying. Yes I have been eating gluten throughout. I've had a history of low ferritin and low folate but both were in range at my last blood test. Because I kept telling them how fatigued I felt he did a full screen of everything. Thyroid, fasting glucose, coeliac etc 

[cristiana]

Lulu, that is interesting.  I'm afraid I've got to go out just now but many of our Moderators are based in the USA so I'm hopeful someone will pick up on this soon, in my absence.  What I would say is it is good that you have had the biopsy, because some people have positive biopsies but borderline or negative blood tests.   Hopefully you won't need to wait too long before you have your answer.

"Speak" later perhaps.

[trents]

Luls, how long have these symptoms been going on?

Several things:

1. My understanding is that the EMA is the most specific but one of the least sensitive of all the celiac serum antibody tests. "The EMA test has a specificity of almost 100%, making it the most specific test for celiac disease, although it is not as sensitive as the tTG-IgA test." https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/  If this one is positive, that says a lot. Especially when the tTG-IGA is also positive. Do you know if the physician ordered a total IGA test? If total IGA is low, it can drive down the tTG-IGA scores.

2. We have reports now and then from those who actually do have celiac disease who test negative on either the antibody tests or the biopsy but positive on the other.

3. I hope the doctor who did the endoscopy/biopsy took several samples from both the duodenum and the duodenum bulb. Damage to the villi can be patchy and missed when the sampling is not done in a thorough fashion.

Keep us posted.

Edited August 19, 2022 by trents

[Luls]

1 minute ago, trents said:

Luls, how long have these symptoms been going on?

Two things:

1. My understanding is that the EMA is the most specific but one of the least sensitive of all the celiac serum antibody tests. "The EMA test has a specificity of almost 100%, making it the most specific test for celiac disease, although it is not as sensitive as the tTG-IgA test." https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/  If this one is positive, that says a lot. Especially when the tTG-IGA is also positive. Do you know if the physician ordered a total IGA test? If total IGA is low, it can drive down the tTG-IGA scores.

2. We have reports now and then from those who actually do have celiac disease who test negative on either the antibody tests or the biopsy but positive on the other.

3. I hope the doctor who did the endoscopy/biopsy took several samples from both the duodenum and the duodenum bulb. Damage to the villi can be patchy and missed when the sampling is not done in a thorough fashion.

Keep us posted.

Thank you for your reply! 

I came off my iron tablets in January and started noticing I felt tired again in march/April. Bloods in April showed ferritin back within range and since then it fatigue has just gotten much much worse. Had bloods done again mid July which showed ferritin still within range but then these two Coeliac tests came back positive. 

 

I'm are the Gastro said he'd taken 3. He seemed to really believe it wasn't Coeliac because of the ttg result

 

[trents]

If the gastro only took three samples it doesn't sound like he did a thorough job. Six or eight (three or four from both areas, duodenum and duodenum bulb) would indicate more thoroughness.

There is also something called NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not damage the villi of the small bowel so there are no tests for it. Celaic disease must first be ruled out. NCGS is 10x more common than celiac disease and the antidote is the same, lifelong total avoidance of gluten.

[Luls]

4 minutes ago, trents said:

If the gastro only took three samples it doesn't sound like he did a thorough job. Six or eight (three or four from both areas, duodenum and duodenum bulb) would indicate more thoroughness.

There is also something called NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not damage the villi of the small bowel so there are no tests for it. Celaic disease must first be ruled out. NCGS is 10x more common than celiac disease and the antidote is the same, lifelong total avoidance of gluten.

Would my blood tests have been positive if it's NCGS? 

 

I guess I'll just have to wait for the biopsy results

[trents]

41 minutes ago, Luls said:

Would my blood tests have been positive if it's NCGS? 

Excellent question! My impression based on what I have read and what others have reported is that a picture is emerging with regard to gluten disorders that is not as black and white as we once thought. Some experts believe NCGS is a precursor to celiac disease. It is also becoming apparent to me that there is considerable variability in immune system response to gluten disorders. Just this week there was an article posted on this forum about research showing that 80% of black people who tested positive for celiac disease via biopsy did not have positive tTG-IGA scores. That's compared to 20% of whites. So, the stats were completely flipped for those two races. All that to say our testing methods appear to not always yield the definitive results we would like.

Edited August 19, 2022 by trents

[Luls]

1 minute ago, trents said:

Excellent question! My impression based on what I have read and what others have reported is that a picture is emerging with regard to gluten disorders that is not as black and white as we once thought. Some experts believe NCGS is a precursor to celiac disease. It is also becoming apparent to me that there is considerable variability in immune system response to gluten disorders. Just this week there was an article posted on this forum about research showing that 80% of black people who tested positive for celiac disease via biopsy did not have positive tTG-IGA scores. That's compared to 20% of whites. So the stats were completely flipped for those two races. So, all that to say our testing methods appear to not always yield the definitive results we would like.

That's really interesting! Thank you so much for taking the time to respond

[trents]

Judging from the way you spelled "coeliac" I'm guessing you are in the UK where I understand there is some kind of government assistance to offset the additional cost of gluten free foods. But apart from that, whether you have celiac disease or NCGS, may be largely an academic question since both would require you to adopt a gluten free lifestyle in order to either avoid the symptoms and possible damage to other body systems. We are getting increasing evidence NCGS, though it doesn't damage the villi of the small bowel, may do damage to other body systems including neurological components. We already know that celiac disease itself has two major expressions: 1. DH (dermatitis herpetiformis) and 2. villi damage n the small bowel. Although most who have DH also get villi damage, there is a percentage who do not.

Edited August 19, 2022 by trents

[Luls]

1 minute ago, trents said:

Judging from the way you spelled "coeliac" I'm guessing you are in the UK where I understand there is some kind of government assistance to offset the additional cost of gluten free foods. But apart from that, whether you have celiac disease or NCGS, may be largely an academic question since both would require you to adopt a gluten free lifestyle.

Yes I'm in the UK. I think it's just so confusing because my main symptom is this awful fatigue rather than some of the more unpleasant gastro symptoms and then with my just inside positive ttg and the gastroenterologist saying they don't put much stock in the EMA I'm just so confused by it all

[trents]

Check my previous post as I added some to it.

[Kate333]

15 hours ago, cristiana said:

Hello Lulu and welcome to the forum.

Tell me, were you eating roughly 2 slices of normal (gluten containing) bread or the equivalent for 6-8 weeks before your blood tests?  You will have needed to be doing so to produce a reaction. 

The reason I ask is because sside gluten, I understand there are a few medical conditions that could give a positive TTG reading. 

It is interesting your doctor ran a coeliac test.  Was that because you were anemic (one reason doctors sometimes check) or because you have relatives with coeliac disease?

Cristiana

Hi Cristiana,

Aside from G exposure/celiac disease, what other medical conditions can affect and/or result in positive TTG blood test results?  Just wondering.

 

 

[trents]

11 hours ago, Luls said:

Yes I'm in the UK. I think it's just so confusing because my main symptom is this awful fatigue rather than some of the more unpleasant gastro symptoms and then with my just inside positive ttg and the gastroenterologist saying they don't put much stock in the EMA I'm just so confused by it all

Symptoms associated with celiac disease are quite variable, actually. GI distress is a classic symptom but there are plenty of "silent" celiacs who just don't present that way. I was one of them. Actually, what led to my celiac diagnosis 20 years ago was persistent mildly elevated liver enzymes that was otherwise an idiopathic condition. Looking back I realize I had some very minimal GI expression but nothing that would have motivated me to seek medical attention. On  the other hand, fatigue is a very common celiac symptom.

[Luls]

3 hours ago, Kate333 said:

Hi Cristiana,

Aside from G exposure/celiac disease, what other medical conditions can affect and/or result in positive TTG blood test results?  Just wondering.

 

 

I was wondering the same thing. I'm also quite interested in people's perspectives on the EMA testing as my gastro completely dismissed it and said he doesn't even know why that test is still being carried out

 

[trents]

7 hours ago, Luls said:

I was wondering the same thing. I'm also quite interested in people's perspectives on the EMA testing as my gastro completely dismissed it and said he doesn't even know why that test is still being carried out

 

"There are just a few conditions in adults that have been reported to have false positive anti-tTG, like primary biliary cirrhosis, autoimmune hepatitis, cirrhosis, connective tissue disease. We found one study of anti-tTG in non-celiac children suffering from infectious disease[1]. We are reporting a first case of temporarily false positive anti-tTG in the setting of acute Epstein-Barr viral (EBV) infection." https://journals.lww.com/ajg/fulltext/2011/10002/false_positive_anti_tissue_transglutaminase.681.aspx

This is from 2011 so a little dated. Google "What can cause false positive tTG-IGA".

Edited August 20, 2022 by trents

[Luls]

On 8/20/2022 at 2:26 PM, trents said:

"There are just a few conditions in adults that have been reported to have false positive anti-tTG, like primary biliary cirrhosis, autoimmune hepatitis, cirrhosis, connective tissue disease. We found one study of anti-tTG in non-celiac children suffering from infectious disease[1]. We are reporting a first case of temporarily false positive anti-tTG in the setting of acute Epstein-Barr viral (EBV) infection." https://journals.lww.com/ajg/fulltext/2011/10002/false_positive_anti_tissue_transglutaminase.681.aspx

This is from 2011 so a little dated. Google "What can cause false positive tTG-IGA".

Just thought I'd give an update. My biopsy came back positive for Coeliac

[trents]

"The gastroenterologist basically said they disregard the EMA and because my ttg was 11 it's highly unlikely I'm coeliac. Had the biopsies today and he said everything looks normal and he thinks the biopsies will be negative."

If you ever need a GI doc for something else, I think I would get a different one. This one does not impress me as being competent. Thanks for the update.

Edited August 30, 2022 by trents

[RMJ]

6 hours ago, Luls said:

Just thought I'd give an update. My biopsy came back positive for Coeliac

Glad you got a definitive answer! I’m glad you followed your instincts and insisted on the biopsy.

[Luls]

4 minutes ago, RMJ said:

Glad you got a definitive answer! I’m glad you followed your instincts and insisted on the biopsy.

Me too and I'm also glad I cut out gluten after my biopsy. Hoping to start feeling better soon