New studies

[Russ H]

10 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.

The sensitivity and specificity of the serum tests for coeliac disease have been extensively researched and quantified.  For example, having a level of anti-tTG2 antibodies at least 10x the reference range is almost certain to be coeliac disease. Tests are normally prescribed by a healthcare professional as part of the diagnosis - who would have one without been overseen by a professional?

[trents]

1 hour ago, Russ H said:

The sensitivity and specificity of the serum tests for coeliac disease have been extensively researched and quantified.  For example, having a level of anti-tTG2 antibodies at least 10x the reference range is almost certain to be coeliac disease. Tests are normally prescribed by a healthcare professional as part of the diagnosis - who would have one without been overseen by a professional?

There are celiac antibody home testing kits available through companies like Imaware. It's a viable option when physician refuses to order the tests.

[latiaovalle81]

On 5/23/2023 at 5:04 PM, trents said:

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.

Blood tests aren't foolproof. They can sometimes give false positives or negatives, so it's smart to approach them with a bit of caution) That's what I meant

What about celiac disease - the blood tests might point in that direction. But to be extra sure, doctors usually recommend an endoscopy or biopsy. These tests check the intestinal lining and act as solid proof to back up what the blood tests are saying.

Long story short, blood tests are helpful, but they're not the end-all, be-all. It's always a good idea to consider additional tests like biopsies for a more reliable diagnosis.

[latiaovalle81]

On 5/23/2023 at 11:40 PM, Russ H said:

The sensitivity and specificity of the serum tests for coeliac disease have been extensively researched and quantified.  For example, having a level of anti-tTG2 antibodies at least 10x the reference range is almost certain to be coeliac disease. Tests are normally prescribed by a healthcare professional as part of the diagnosis - who would have one without been overseen by a professional?

Yeah, the serum tests for coeliac disease have been researched and quantified, looking at sensitivity and specificity. If your anti-tTG2 antibody levels are like ten times higher than the reference range, chances are you've got coeliac disease. But here's the deal: doing these tests without a professional overseeing them? Not the best move.

I mean, who wants to play doctor without an actual doctor. Having a healthcare professional involved ensures the tests are interpreted correctly, considering any other factors that could mess things up.

So, sure, the serum tests can be helpful, but it's crucial to have a pro in your corner. Trust me, it's better to be safe and let the experts handle it when it comes to your health.

[trents]

7 minutes ago, latiaovalle81 said:

Yeah, the serum tests for coeliac disease have been researched and quantified, looking at sensitivity and specificity. If your anti-tTG2 antibody levels are like ten times higher than the reference range, chances are you've got coeliac disease. But here's the deal: doing these tests without a professional overseeing them? Not the best move.

I mean, who wants to play doctor without an actual doctor. Having a healthcare professional involved ensures the tests are interpreted correctly, considering any other factors that could mess things up.

So, sure, the serum tests can be helpful, but it's crucial to have a pro in your corner. Trust me, it's better to be safe and let the experts handle it when it comes to your health.

Sure . . . if, that is, you are connected with physicians that are up on gluten disorders. But the problem is, many are not and over and over again this online community has attested to that through their real life experience. Many of us suffered the ravages of celiac disease for many years with misdiagnoses from the medical community before finally getting diagnosed. So, we have had to take things into our own hands in order to get answers and actual solutions.

Edited May 25, 2023 by trents

[Scott Adams]

    

        8 minutes ago, latiaovalle81 said:     

    

            Yeah, the serum tests for coeliac disease have been researched and quantified, looking at sensitivity and specificity. If your anti-tTG2 antibody levels are like ten times higher than the reference range, chances are you've got coeliac disease. But here's the deal: doing these tests without a professional overseeing them? Not the best move.         

            I mean, who wants to play doctor without an actual doctor. Having a healthcare professional involved ensures the tests are interpreted correctly, considering any other factors that could mess things up.         

            So, sure, the serum tests can be helpful, but it's crucial to have a pro in your corner. Trust me, it's better to be safe and let the experts handle it when it comes to your health.         

Actually in my experience more errors are made by: 1) Doctors not doing the biopsies properly during an endoscopy for celiac disease and/or not providing any Marsh score on the findings; 2) Doctors not informing their patients to do a gluten challenge properly before a biopsy OR blood test; 3) Doctors not understanding the blood test results when one test like the tTG test might be positive, while another like the EMA-IgA might be negative--many doctors wrongly interpret this as negative for celiac disease.

I could think of more things here, but when done using the protocol a celiac disease blood panel is considered to be 96-98% accurate, according to the Mayo Clinic. Nothing is 100%, so to say that something this accurate is not perfect is a fallacy.

[Scott Adams]

Oh, and how could I forget, but 4) Doctors often fail to check for total serum IGA levels, which is just standard protocol for any celiac disease blood screening.

[latiaovalle81]

13 minutes ago, trents said:

Sure . . . if, that is, you are connected with physicians that are up on gluten disorders. But the problem is, many are not and over and over again this online community has attested to that through their real life experience. Many of us suffered the ravages of celiac disease for many years with misdiagnoses from the medical community before finally getting diagnosed. So, we have had to take things into our own hands in order to get answers and actual solutions.

The sad truth is that many doctors aren't on top of their game when it comes to gluten disorders. Countless folks in this online community have shared their stories of suffering from celiac disease for years, going through misdiagnoses left and right before finally getting the right answer...

That's why we've had to take matters into our own hands. We couldn't just sit around waiting for the medical community to catch up.

Let's face it, we can't always rely on doctors to have all the answers. It's about being our own health heroes and not settling for less.

[trents]

1 minute ago, latiaovalle81 said:

The sad truth is that many doctors aren't on top of their game when it comes to gluten disorders. Countless folks in this online community have shared their stories of suffering from celiac disease for years, going through misdiagnoses left and right before finally getting the right answer...

That's why we've had to take matters into our own hands. We couldn't just sit around waiting for the medical community to catch up.

Let's face it, we can't always rely on doctors to have all the answers. It's about being our own health heroes and not settling for less.

Seems like you're playing on both sides of the net.

[latiaovalle81]

14 minutes ago, Scott Adams said:

Actually in my experience more errors are made by: 1) Doctors not doing the biopsies properly during an endoscopy for celiac disease and/or not providing any Marsh score on the findings; 2) Doctors not informing their patients to do a gluten challenge properly before a biopsy OR blood test; 3) Doctors not understanding the blood test results when one test like the tTG test might be positive, while another like the EMA-IgA might be negative--many doctors wrongly interpret this as negative for celiac disease.

I could think of more things here, but when done using the protocol a celiac disease blood panel is considered to be 96-98% accurate, according to the Mayo Clinic. Nothing is 100%, so to say that something this accurate is not perfect is a fallacy.

You've got some valid points, but let me throw in my two cents based on my own experience. Sure, doctors can make mistakes, but it's not all on them. Here's the deal:

First, the biopsies during endoscopies for celiac disease. It's not always the doctors who mess up. Sometimes the lab techs mishandle the samples or the pathologists don't provide a clear Marsh score. It's frustrating when you're left with incomplete results.

Second, the gluten challenge before a biopsy or blood test. Yeah, doctors should inform patients properly, but let's not forget that some patients don't follow the protocol correctly.

Lastly, those blood test results. The Mayo Clinic says the celiac disease blood panel is 96-98% accurate when done right. But here's the kicker: interpretation matters. Doctors can misinterpret the results, especially when one test is positive and another is negative.

Look, the tests have a high accuracy rate, but mistakes happen. It's not just on the doctors. We gotta acknowledge the limitations and not think they're perfect. Nothing in this world is 100% accurate.

[latiaovalle81]

1 minute ago, trents said:

Seems like you're playing on both sides of the net.

Errr, yep, I've seen now I got confused.
I need a little bit to think😐

[shadycharacter]

28 minutes ago, latiaovalle81 said:

Yeah, the serum tests for coeliac disease have been researched and quantified, looking at sensitivity and specificity. If your anti-tTG2 antibody levels are like ten times higher than the reference range, chances are you've got coeliac disease. But here's the deal: doing these tests without a professional overseeing them? Not the best move.

I mean, who wants to play doctor without an actual doctor. Having a healthcare professional involved ensures the tests are interpreted correctly, considering any other factors that could mess things up.

So, sure, the serum tests can be helpful, but it's crucial to have a pro in your corner. Trust me, it's better to be safe and let the experts handle it when it comes to your health.

Unfortunately many people have bad experiences of sloppy, rude, arrogant and/or ignorant doctors. Each case is different. I had nutritional deficiencies (despite good diet) that were never followed up as possible celiac. Many years later I tried gluten free on my own initiative and my health improved. Not ideal, but sometimes doctors are not to be trusted. I'd say don't trust doctors blindly. Some are excellent, others not.

[latiaovalle81]

Yes, that's the deal. And the best conclusion.
I can just agree👍

[KennaH]

I was hospitalized twice focusing on colon issues with no change to symptoms when released. Found another doctor and basically exacerbated symptoms to get endoscopy. Moderate to severe damage. ThT was December. Still have problems. Doctor just put me on IBS-D meds but said lymphocytes found in stomach and most often associated with celiac. That is next step after the new meds. They aren’t working. Hard to find someone that listens. So embarrassing to be in public with no ability to control body despite gluten-free diet. So on gluten-free and IBS diet. No luck yet but still trying. Gotta research and list questions when talking to doctor, I have found to make any progress. Hang in there! 

[Wheatwacked]

16 hours ago, KennaH said:

lymphocytes found in stomach and most often associated with celiac. That is next step after the new meds.

Wouldn't it make more sense to try gluten free diet before meds?  The side effects of GFD does not include:

1. What side effects can Dicyclomine cause?
2. dry mouth.
3. upset stomach.
4. vomiting.
5. constipation.
6. stomach pain.
7. gas or bloating.
8. loss of appetite.
9. dizziness.
10. hot, flushed, dry skin
11. confusion
12. forgetfulness
13. seeing things or hearing voices that do not exist (hallucinating)
14. unsteadiness
15. coma
16. anxiety
17. excessive tiredness
18. difficulty falling asleep or staying asleep
19. excitement
20. inappropriate mood
21. muscle weakness
22. rapid or pounding heartbeat
23. fainting
24. hives
25. skin rash
26. itching
27. difficulty breathing or swallowing
28. Dicyclomine may cause other side effects.

And let us not forget many of the new, expensive drugs also have a side effect called SUDDEN DEATH SYNDROME,

 

[latiaovalle81]

That way, we can condemn many things

[Wheatwacked]

Eating gluten free does not necessarily replenish the vitamin deficiencies a person with Celiac Disease developes over the years.  Most will eventually correct, except vitamin D.

Common Nutrient Deficiencies in People with Newly Diagnosed/Untreated Celiac Disease