New studies

[knitty kitty]

@LP023,

Since Celiac Disease is genetic,  a lot of the misdiagnosis runaround could be cut out if a DNA screening for Celiac genes is done early on in symptomatic people with family history of digestive problems or other health issues consistent with untreated Celiac Disease.  

While not all Celiac genes are known, and having the genes doesn't mean one has active Celiac disease, genetic testing would help identify possible Celiac disease much earlier than the ten year trek to diagnosis.

 

[Russ H]

Agreed. A good way to rule out most suspect cases. However, genetic testing is relatively expensive.

[knitty kitty]

So is ten or more years of being misdiagnosed... loss of health, loss of quality of life, loss of employment....

....while the doctors are enjoying their yachts....

Celiac disease isn't a disease of the past.

May is Celiac Disease Awareness month!  

Edited May 18, 2023 by knitty kitty
Typo

[Russ H]

Genetic testing is useful to exclude coeliac disease, but I think the main thing is to pick it up with antibody screening. I was misdiagnosed for 22 years although I suspect I have had coeliac disease for 45 years. It is a horrible disease and the blood test is relatively cheap. Screening children and 1st degree relatives will catch most cases.

[knitty kitty]

@Russ H,

Some plain old horse sense would work wonders, too.  

Be aware of your heritage.  

My surname is a clue that I'm from Northern European descent which is one of the groups with the highest rate of Celiac Disease.  

I have an article for you on the search for better diagnostic testing...

 

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 

Edited May 19, 2023 by knitty kitty
Typo

[LP023]

3 hours ago, Russ H said:

Agreed. A good way to rule out most suspect cases. However, genetic testing is relatively expensive.

Cheaper than a scope.

[LP023]

4 hours ago, Russ H said:

That is wrong. If you follow up reference 8, you will read:

The EMA test just detects tTG2 antibodies but with a courser and higher threshold. This is why it is more specific but less sensitive. It is not more accurate - it has fewer false positives but more false negatives.

Further, coeliac antibodies - particularly anti-tTG2 - are produced by intestinal lymphocytes, not the endomysium. They do bind to the endomysium because it expresses tTG2. However, the test is old, crude and subjective.

As many as 5% test false positive on the TTG. That is why it is followed up by an EMA. We always ran a follow up on any antibody test in the lab. You wouldn’t believe how many false positive HIVs we had on the elisa and followed up with a western blot and it was negative. Never diagnose based on a TTG. Especially low. The same illnesses that cause false positive TTGs also cause false positive biopsies. Also have to take in consideration that you can get different results from different t pathologist. Many people who follow a celiac diet don’t recover. Those people are false diagnosed. My point is the only way to diagnose celiac is flawed.

[trents]

1 hour ago, LP023 said:

As many as 5% test false positive on the TTG. That is why it is followed up by an EMA. We always ran a follow up on any antibody test in the lab. You wouldn’t believe how many false positive HIVs we had on the elisa and followed up with a western blot and it was negative. Never diagnose based on a TTG. Especially low. The same illnesses that cause false positive TTGs also cause false positive biopsies. Also have to take in consideration that you can get different results from different t pathologist. Many people who follow a celiac diet don’t recover. Those people are false diagnosed. My point is the only way to diagnose celiac is flawed.

Are you saying that refractory celiac disease is a myth?

[Russ H]

9 hours ago, LP023 said:

As many as 5% test false positive on the TTG. That is why it is followed up by an EMA. We always ran a follow up on any antibody test in the lab. You wouldn’t believe how many false positive HIVs we had on the elisa and followed up with a western blot and it was negative. Never diagnose based on a TTG. Especially low. The same illnesses that cause false positive TTGs also cause false positive biopsies. Also have to take in consideration that you can get different results from different t pathologist. Many people who follow a celiac diet don’t recover. Those people are false diagnosed. My point is the only way to diagnose celiac is flawed.

EMA is just tTG2 with a high threshold. It detects the same antibodies just more crudely. Moderately raised tTG2 can be caused by other conditions but when the tTG2 antibodies are at least 10x the reference range, that is almost certainly coeliac disease. This is in essence what the EMA test is doing.

[Scott Adams]

15 hours ago, LP023 said:

As many as 5% test false positive on the TTG. 

Please provide a source link for this, as I do not believe this is the case.

[trents]

https://www.beyondceliac.org/celiac-news/negative-blood-test-other-conditions/

"Additionally, a registry of celiac disease patients at the University of Alabama at Birmingham found that 80% of Black patients with biopsy-confirmed celiac disease had negative results on the TtG test. While the study sample was small, these results raise the question of how well the TtG test works for patients who are Black."

[LP023]

On 5/19/2023 at 12:02 AM, trents said:

Are you saying that refractory celiac disease is a myth?

I’m saying they may have been misdiagnosed and actually have something else. 

[LP023]

On 5/19/2023 at 1:35 PM, Scott Adams said:

Please provide a source link for this, as I do not believe this is the case.

 

Just now, LP023 said:

 

Of course it depends on where you look and research. My guess is they really don’t know. My gastroenterologist told me TTG absolutely does not diagnose celiac. 

[trents]

I would say that a 95% accuracy rate is good enough to be considered a reliable diagnostic tool. Very few tests are fool proof.

[Scott Adams]

5 hours ago, LP023 said:

 

Of course it depends on where you look and research. My guess is they really don’t know. My gastroenterologist told me TTG absolutely does not diagnose celiac. 

Please provide a link, not screen shots...I can't tell where this info comes from.

[Aussienae]

Just wondering while this is being discussed, if the blood work was positive and the antibodies reduced on a gluten-free diet, could it still be a false positive? 

So would one of the reasons for a false positive still respond to a gluten free diet? Therefore the antibodies would reduce to zero?

[shadycharacter]

12 hours ago, Scott Adams said:

Please provide a link, not screen shots...I can't tell where this info comes from.

I found the link by googling part of the text. It's from a law firm in the context of malpractice suits.

https://whitneyfirm.com/how-accurate-are-blood-tests-for-celiac-disease/

[trents]

2 hours ago, Aussienae said:

Just wondering while this is being discussed, if the blood work was positive and the antibodies reduced on a gluten-free diet, could it still be a false positive? 

So would one of the reasons for a false positive still respond to a gluten free diet? Therefore the antibodies would reduce to zero?

That's an excellent point. If antibodies go down on the gluten-free diet then, even though symptoms remain, it tells you that there is celiac disease present though it also tells you it's not the only problem.

[Scott Adams]

On 5/21/2023 at 5:38 AM, shadycharacter said:

I found the link by googling part of the text. It's from a law firm in the context of malpractice suits.

https://whitneyfirm.com/how-accurate-are-blood-tests-for-celiac-disease/

So I would not take this as the best scientific viewpoint on the subject of celiac disease blood test accuracy, but as mentioned in this thread, if this were a false positive then a gluten-free diet would not cause the values to go down, and vice versa.

[Russ H]

4 hours ago, Scott Adams said:

So I would not take this as the best scientific viewpoint on the subject of celiac disease blood test accuracy, but as mentioned in this thread, if this were a false positive then a gluten-free diet would not cause the values to go down, and vice versa.

I think some of the terminology is wrong. Rather than 'testing positive', I think it is better to say 'having raised antibody levels'.

We seem to be going around in circles in this thread. It is true that raised tTG2 antibody levels can be caused by other conditions, particularly involving inflammation of the bowel, liver or joints. However, very high tTG2 levels (at least 10x the reference range) are almost certainly coeliac disease. If anyone has reliable evidence that this not true, then they should publish a peer-reviewed paper in a respectable journal to make this available to the wider scientific community.

As to refractory coeliac disease not being real. then I think LP023 should read these 2 links which seem to be a good summary of the consensus scientific opinion.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/refractory-coeliac-disease/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861306/

[trents]

3 minutes ago, Russ H said:

As to refractory coeliac disease not being real. then I think LP023 should read these 2 links which seem to be a good summary of the consensus scientific opinion.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/refractory-coeliac-disease/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2861306/

LP023 never actually said RCD was not real. That was my conclusion from what what he/she did say. which to me, seemed to be inferring that.

[Russ H]

5 minutes ago, trents said:

LP023 never actually said RCD was not real. That was my conclusion from what what he/she did say. which to me, seemed to be inferring that.

But LP023 said:

Quote

I’m saying they may have been misdiagnosed and actually have something else. 

RCD is rare and difficult to diagnose. For example, someone may respond to a gluten-free diet when young and in later life develop RCD. Of course, it may be something else but that is the whole point of diagnosis: medical professionals will have made great effort to exclude other causes. Someone reading this thread who is suffering from RCD, which is a difficult condition, could be misled. This is a major forum within the community of people with coeliac disease and misinformation needs to be challenged.

[Scott Adams]

We have an entire category on refractory celiac disease, which is very real, and have summarized around 40 studies on it over the years:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/refractory-celiac-disease-collagenous-sprue/

[latiaovalle81]

Hi, I am afraid to receive bullying (especially as a newcomer), but I have a different take on it, guys. While going gluten-free can make certain blood values go down for people with celiac disease, it's not a surefire way to judge the accuracy of a blood test. Those celiac disease blood tests aren't foolproof. They can give false positives or negatives, so you can't rely solely on whether values decrease on a gluten-free diet to determine if the test was accurate or not... I bet everyone knows that to really figure out if a celiac disease blood test was on point, it's best to chat with a healthcare pro who specializes in this stuff. And I also don't get... just changing your diet isn't enough to decide if a test was right or wrong in medical situations.

[trents]

4 hours ago, latiaovalle81 said:

Hi, I am afraid to receive bullying (especially as a newcomer), but I have a different take on it, guys. While going gluten-free can make certain blood values go down for people with celiac disease, it's not a surefire way to judge the accuracy of a blood test. Those celiac disease blood tests aren't foolproof. They can give false positives or negatives, so you can't rely solely on whether values decrease on a gluten-free diet to determine if the test was accurate or not... I bet everyone knows that to really figure out if a celiac disease blood test was on point, it's best to chat with a healthcare pro who specializes in this stuff. And I also don't get... just changing your diet isn't enough to decide if a test was right or wrong in medical situations.

Yes, but if these tests are repeated over time as follow-up and there is a pattern then I would think it appropriate to trust the blood tests. Alslo, that's why an endoscopy/biopsy is typically done if blood test values indicate celiac disease. The biopsy is corroboration.