Please help me understand my positive coeliac test

[BeckyH25]

Hello,

I wondered if you could help me understand my recent blood tests from the doctors. I’ve tried to Google the life out of it and it’s all very scientific.

my tTG results came back as follows TTG IGA 29.1 u/ml, negative IGA endomysial AB. I am being referred to a gastroenterologist to discuss further and maybe have a biopsy.

My only symptoms are that I bloat sometimes after food, my heart races like I have bad anxiety if I eat too much or am full or after caffeine (could be after gluten I’m not sure) and I have constipation (which I’ve always had). 
I am worried I’m going to be pushed to have loads of unnecessary and uncomfortable tests for nothing. I don’t suffer with any pain like other people do either. Also, my grandma was diagnosed with celiac disease but in her 80s.

Can anybody help me make sense of my results. I’m in two minds whether to believe I have celiac disease or if I feel like a fraud lol.

Please help? Thanks 😊 

[trents]

Welcome to the forum, Becky!

We need a reference range for the TTG-IGA to determine whether 29.1u/ml is a positive or a negative. There is not an industry standard for reference ranges among laboratories so we need to know what that particular lab used for a reference range on that test.

Edited June 21, 2022 by trents

[BeckyH25]

8 minutes ago, trents said:

Welcome to the forum, Becky!

We need a reference range for the TTG-IGA to determine whether 29.1u/ml is a positive or a negative. There is not an industry standard for reference ranges among laboratories so we need to know what that particular lab used for a reference range on that test.

Hi,

These results are on my referral letter and the doctor said my tTN results were positive or in other terms raised and that was enough evidence for them to send me onto a specialist. I don’t have anymore information until I see a specialist 😞 

[trents]

You had two tests run:

1. TTG-IGA

2. IGA endomysial AB

#2 was negative so I am assuming, #1 (the TTG-IGA) was positive, though not specifically stated. 

The TTG-IGA antibody test is the most common test run for celiac disease as it combines good specificity with good sensitivity. 

The IGA endomysial AB is even more specific for celiac disease but is less sensitive than the TTG-IGA. It is also an expensive test. I'm a little surprised that your doctor ordered that one right off the bat. Normally, it is not ordered unless the tTG-IGA is negative despite strong symptoms suggesting celiac disease. There are other, less expensive tests that can be run to check against a negative TTG-IGA when symptoms point to celiac disease. Here is a primer for serum antibody tests that can be run to check for celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

There are few other diseases and some medications that can cause elevated TTG-IGA but the odds are you have celiac disease. But since the 29.1u/ml is probably not an unequivocally high number, and the endomysial test was negative, your physician was hesitant to conclude that you, beyond the shadow of a doubt, have celiac disease. The GI referral may result in more thorough antibody testing and an endoscopy/biopsy as well. The endoscopy/biopsy is considered the gold standard for diagnosing celiac disease. 

The symptoms you describe are consistent with celiac disease. There is a huge misconception in the general public about celiac disease symptoms. It does not always produce pain and diarrhea. In fact, many people who eventually get diagnosed with celiac disease experience no symptoms (or very minimal ones) for years until the damage to the small bowel lining becomes quite progressed. We call them "silent" celiacs. 

You also have the option of forgoing additional testing, assume that you do have celiac disease, and commence the gluten free lifestyle. Although, it sounds like to me you may need the testing and official diagnosis to create that kind of commitment and resolve.

Edited June 21, 2022 by trents

[BeckyH25]

20 minutes ago, trents said:

You had two tests run:

1. TTG-IGA

2. IGA endomysial AB

#2 was negative so I am assuming, #1 (the TTG-IGA) was positive, though not specifically stated. 

The TTG-IGA antibody test is the most common test run for celiac disease as it combines good specificity with good sensitivity. 

The IGA endomysial AB is even more specific for celiac disease but is less sensitive than the TTG-IGA. It is also an expensive test. I'm a little surprised that your doctor ordered that one right off the bat. Normally, it is not ordered unless the tTG-IGA is negative despite strong symptoms suggesting celiac disease. There are other, less expensive tests that can be run to check against a negative TTG-IGA when symptoms point to celiac disease. Here is a primer for serum antibody tests that can be run to check for celiac disease: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

There are few other diseases and some medications that can cause elevated TTG-IGA but the odds are you have celiac disease. But since the 29.1u/ml is probably not an unequivocally high number, and the endomysial test was negative, your physician was hesitant to conclude that you, beyond the shadow of a doubt, have celiac disease. The GI referral may result in more thorough antibody testing and an endoscopy/biopsy as well. The endoscopy/biopsy is considered the gold standard for diagnosing celiac disease. 

The symptoms you describe are consistent with celiac disease. There is a huge misconception in the general public about celiac disease symptoms. It does not always produce pain and diarrhea. In fact, many people who eventually get diagnosed with celiac disease experience no symptoms (or very minimal ones) for years until the damage to the small bowel lining becomes quite progressed. We call them "silent" celiacs. 

You also have the option of forgoing additional testing, assume that you do have celiac disease, and commence the gluten free lifestyle. Although, it sounds like to me you may need the testing and official diagnosis to create that kind of commitment and resolve.

Hi,

thank you so much for that information. I’m probably going to have to go down the biology route then but I’m scared. I’m a wimp and hate hospitals.

Are my levels classes as mild? If so does that mean I could always be care with gluten or will I have to never eat it again? I’m a real foodie and this is going to be very difficult.

Thanks again for your advice it’s really helped.

My specialist appointment is on Monday.

 

[trents]

3 minutes ago, BeckyH25 said:

Hi,

thank you so much for that information. I’m probably going to have to go down the biology route then but I’m scared. I’m a wimp and hate hospitals.

Are my levels classes as mild? If so does that mean I could always be care with gluten or will I have to never eat it again? I’m a real foodie and this is going to be very difficult.

Thanks again for your advice it’s really helped.

My specialist appointment is on Monday.

 

Since you are not able to provide reference ranges for the TTG-IGA I cannot say for sure that your test results are "mild". But let me just say we sometimes see those numbers in the hundreds. But no, it does not mean you can be more relaxed than others in your commitment to avoid gluten if, in fact, further testing confirms these initial results. The "mild" numbers may simply mean you have caught it at an early stage before the inflammation in the small bowel lining had become severe. And it would also mean you can never go back to eating gluten. Celiac disease is not an allergy. It is an autoimmune disorder that has a genetic base. It is not something you can "get over" such that you can go back to eating gluten at some point.

The specialist may very well wish to do an endoscopy with biopsy to confirm the TTG-IGA positive. I don't know where you live or what protocols are like there for endoscopies but here in the USA, GI docs will commonly administer conscious sedation for the scoping. If so, you will feel no discomfort and you won't even remember the scoping. If they do use conscious sedation, you won't experience any gagging or choking. There is no laxative prep like there is before a colonoscopy. You can ask if they will be using conscious sedation or not. I've had it done several times and it is a piece of cake.

Keep us posted.

[BeckyH25]

9 minutes ago, trents said:

Since you are not able to provide reference ranges for the TTG-IGA I cannot say for sure that your test results are "mild". But let me just say we sometimes see those numbers in the hundreds. But no, it does not mean you can be more relaxed than others in your commitment to avoid gluten if, in fact, further testing confirms these initial results. The "mild" numbers may simply mean you have caught it at an early stage before the inflammation in the small bowel lining had become severe. And it would also mean you can never go back to eating gluten. Celiac disease is not an allergy. It is an autoimmune disorder that has a genetic base. It is not something you can "get over" such that you can go back to eating gluten at some point.

The specialist may very well wish to do an endoscopy with biopsy to confirm the TTG-IGA positive. I don't know where you live or what protocols are like there for endoscopies but here in the USA, GI docs will commonly administer conscious sedation for the scoping. If so, you will feel no discomfort and you won't even remember the scoping. If they do use conscious sedation, you won't experience any gagging or choking. There is no laxative prep like there is before a colonoscopy. You can ask if they will be using conscious sedation or not. I've had it done several times and it is a piece of cake.

Keep us posted.

I live in the UK. I’m going private though. I shall let you know how I get on. Thanks again 

[Russ H]

Health service labs in the UK will often run an endomysial antibody test on all positive anti-tTG2 tests. The whole thing is in a state of flux with developing knowledge and practices. The anti-tTG2 tests appear to be pretty much as reliable as endomysial tests as the technology has improved (human recombinant tTG ELISA). Since they both test for antibodies to tTG2, seems to me that they would be better testing for deamidated gliadin antibodies instead. I don't know about now, but the endomysial test used to require technicians looking through a fluorescence microscope at slides of various dilutions - so it was subjective and quite course: a low positive anti-tTG2 might not show up on endomysial antibody assay, not because they measure different things but because one is less sensitive than the other.

https://www.gloshospitals.nhs.uk/our-services/services-we-offer/pathology/tests-and-investigations/tissue-transglutaminase-ttg/

[BeckyH25]

On 6/21/2022 at 6:06 PM, trents said:

Since you are not able to provide reference ranges for the TTG-IGA I cannot say for sure that your test results are "mild". But let me just say we sometimes see those numbers in the hundreds. But no, it does not mean you can be more relaxed than others in your commitment to avoid gluten if, in fact, further testing confirms these initial results. The "mild" numbers may simply mean you have caught it at an early stage before the inflammation in the small bowel lining had become severe. And it would also mean you can never go back to eating gluten. Celiac disease is not an allergy. It is an autoimmune disorder that has a genetic base. It is not something you can "get over" such that you can go back to eating gluten at some point.

The specialist may very well wish to do an endoscopy with biopsy to confirm the TTG-IGA positive. I don't know where you live or what protocols are like there for endoscopies but here in the USA, GI docs will commonly administer conscious sedation for the scoping. If so, you will feel no discomfort and you won't even remember the scoping. If they do use conscious sedation, you won't experience any gagging or choking. There is no laxative prep like there is before a colonoscopy. You can ask if they will be using conscious sedation or not. I've had it done several times and it is a piece of cake.

Keep us posted.

My specialist has just cancelled my appointment on Monday 😡 so now it’s the following Saturday.

The waiting is driving me crazy! 

[trents]

3 hours ago, BeckyH25 said:

My specialist has just cancelled my appointment on Monday 😡 so now it’s the following Saturday.

The waiting is driving me crazy! 

Bummer!

[BeckyH25]

On 6/21/2022 at 5:16 PM, BeckyH25 said:

I live in the UK. I’m going private though. I shall let you know how I get on. Thanks again 

 

On 6/24/2022 at 2:24 PM, trents said:

Bummer!

Hi Trents,

Are you a medical profession?

I can’t stop thinking about my results it’s driving me crazy!

In your opinion as I tested positive 29.1 for my TTG-IGA 

however, I tested negative for my IGA endomysial AB results what does that mean to you?

I really don’t want to have a biopsy done. 
 

Do my results sound high to you? Or could it be I maybe don’t have coeliac disease?

Thank you for your help so far. I’m finding it difficult to understand and waiting until Saturday is really doing my head in.

[Russ H]

2 minutes ago, BeckyH25 said:

 

Hi Trents,

Are you a medical profession?

I can’t stop thinking about my results it’s driving me crazy!

In your opinion as I tested positive 29.1 for my TTG-IGA 

however, I tested negative for my IGA endomysial AB results what does that mean to you?

I really don’t want to have a biopsy done. 
 

Do my results sound high to you? Or could it be I maybe don’t have coeliac disease?

Thank you for your help so far. I’m finding it difficult to understand and waiting until Saturday is really doing my head in.

Both tests you had done measure the amount of IgA anti-tTG2 antibodies you have in your blood. The tests use different processes: the standard IgA tTg test is more sensitive than the IgA EMA test. The reason that you tested positive only on the IgA tTG test could be because your levels are only moderately positive.

There are other conditions that can cause raised levels of IgA anti-tTG2 antibodies in your blood stream such as Crohn's Disease, liver inflammation and Type 1 diabetes. High levels of IgA anti-tTG2 are very likely to be due to coeliac disease but borderline levels could be due to coeliac or another condition.

[BeckyH25]

7 minutes ago, Russ314 said:

Both tests you had done measure the amount of IgA anti-tTG2 antibodies you have in your blood. The tests use different processes: the standard IgA tTg test is more sensitive than the IgA EMA test. The reason that you tested positive only on the IgA tTG test could be because your levels are only moderately positive.

There are other conditions that can cause raised levels of IgA anti-tTG2 antibodies in your blood stream such as Crohn's Disease, liver inflammation and Type 1 diabetes. High levels of IgA anti-tTG2 are very likely to be due to coeliac disease but borderline levels could be due to coeliac or another condition.

Thanks for your reply Russ.

I’m pretty fit and healthy so I can’t see it being anything else. I don’t suffer with pain only bloating and an uncomfortable feeling plus, I get heart palpitations when I eat heavy meals like a sandwich with fries (it’s like I’m anxious). My grandma also has Coeliac disease.

Could it be I just need to try stay away from gluten? 

 

[Russ H]

17 minutes ago, BeckyH25 said:

Thanks for your reply Russ.

I’m pretty fit and healthy so I can’t see it being anything else. I don’t suffer with pain only bloating and an uncomfortable feeling plus, I get heart palpitations when I eat heavy meals like a sandwich with fries (it’s like I’m anxious). My grandma also has Coeliac disease.

Could it be I just need to try stay away from gluten? 

 

Coeliac disease varies greatly in symptoms and severity between people. In fact most people do not realise that they have it. It is always worth treating with a gluten-free diet as symptoms can flare up at any time, and silent disease can still cause gut damage, food malabsorption, anaemia, osteoporosis and raised cancer risk among other things. I never had any gastrointestinal pain as such even though I was quite ill for many years.

If you do have coeliac disease you need to follow a strict gluten-free diet for life. This is actually quite onerous and restrictive with regard to eating out and sharing a kitchen with other people as you need to keep your daily gluten consumption to less than 10 milligrams. Just a few breadcrumbs can make you ill and boost your auto-antibodies.

For this reason, I would like to be sure that I had coeliac disease or non-coeliac gluten sensitivity before I embarked on such a diet.

It is also worth having a formal diagnosis so that you can be followed up medically, and also in case you need medical care in future e.g. in hospital.

Some people e.g. with IBS report that avoiding gluten makes their symptoms improve. This could be something to try once the possibility of coeliac disease has been eliminated, and possibly doesn't need to be as strict a diet.

People having endoscopy are offered sedation, which makes it a lot less stressful.

[trents]

Russ314, you said: "Some people e.g. with IBS report that avoiding gluten makes their symptoms improve. This could be something to try once the possibility of coeliac disease has been eliminated, and possibly doesn't need to be as strict a diet."

But what if BeckyH25 has NCGS? Are you saying she doesn't nee to be as strict in avoiding gluten?

[BeckyH25]

7 hours ago, trents said:

Russ314, you said: "Some people e.g. with IBS report that avoiding gluten makes their symptoms improve. This could be something to try once the possibility of coeliac disease has been eliminated, and possibly doesn't need to be as strict a diet."

But what if BeckyH25 has NCGS? Are you saying she doesn't nee to be as strict in avoiding gluten?

So basically I have to have the biopsy if that’s what’s suggested by the consultant on Saturday 😞. I’ve heard it’s not very nice in the UK

[Russ H]

8 hours ago, trents said:

Russ314, you said: "Some people e.g. with IBS report that avoiding gluten makes their symptoms improve. This could be something to try once the possibility of coeliac disease has been eliminated, and possibly doesn't need to be as strict a diet."

But what if BeckyH25 has NCGS? Are you saying she doesn't nee to be as strict in avoiding gluten?

I am not suggesting that for NCGS. If someone does not have blunting of the villi and does not have antibodies indicative of coeliac, is it worth eliminating gluten to a level below that which avoids symptoms? Take IBS - in some cases it seems to be antagonised by gluten even if gluten is not the direct cause of the condition. If avoiding major sources of gluten such as bread and pasta is sufficient, is it worth trying to get down to 10 mg per day, which is quite onerous?

[Russ H]

20 minutes ago, BeckyH25 said:

So basically I have to have the biopsy if that’s what’s suggested by the consultant on Saturday 😞. I’ve heard it’s not very nice in the UK

BeckyH25,

That is entirely your choice. I don't think the UK is particularly bad for endoscopy procedures. My mother had one with sedation and couldn't remember it afterwards. In my experience, worrying about a procedure is far worse than the procedure itself. The NHS has been cut to the bone - consultants do not offer procedures that are not medically justified.

Russ

[T burd]

51 minutes ago, Russ314 said:

BeckyH25,

That is entirely your choice. I don't think the UK is particularly bad for endoscopy procedures. My mother had one with sedation and couldn't remember it afterwards. In my experience, worrying about a procedure is far worse than the procedure itself. The NHS has been cut to the bone - consultants do not offer procedures that are not medically justified.

Russ

If you do get anoscopy make sure they take a duodenal bulb sample and  Duodenum sample because my duodenum sample was negative when my  duodenum bulb was positive.

[BeckyH25]

11 hours ago, T burd said:

If you do get anoscopy make sure they take a duodenal bulb sample and  Duodenum sample because my duodenum sample was negative when my  duodenum bulb was positive.

Thanks everyone. I shall let you know how it goes on Saturday with the consultant.

I had a pizza last night and felt totally fine afterwards - typical.

[BeckyH25]

On 6/28/2022 at 11:42 AM, BeckyH25 said:

Thanks everyone. I shall let you know how it goes on Saturday with the consultant.

I had a pizza last night and felt totally fine afterwards - typical.

I’ve seen the specialist this morning and I’m booked in for an endoscopy on the 21st July 😞

[trents]

54 minutes ago, BeckyH25 said:

I’ve seen the specialist this morning and I’m booked in for an endoscopy on the 21st July 😞

You will need to have been consuming gluten in the equivalent amount of 2 pieces of wheat bread daily for at least six weeks leading up to the endoscopy. I hope you haven't already started cutting back on gluten.

[BeckyH25]

18 hours ago, trents said:

You will need to have been consuming gluten in the equivalent amount of 2 pieces of wheat bread daily for at least six weeks leading up to the endoscopy. I hope you haven't already started cutting back on gluten.

No I haven’t I’ve still be eating it

[BeckyH25]

On 7/3/2022 at 10:52 AM, BeckyH25 said:

No I haven’t I’ve still be eating it

My endoscopy is tomorrow afternoon. Any last words of advice?

I am extremely anxious 😬 

[trents]

43 minutes ago, BeckyH25 said:

My endoscopy is tomorrow afternoon. Any last words of advice?

I am extremely anxious 😬 

Will they be using conscious sedation? If so, you will not be aware of any discomfort and will not remember it even if it happens.