So confused!

[Scrapmanson]

Please Can anyone help me out? My Dr said I'm negative and now says sibo... I'm so confused and in pain all the time! Just had another blood test and the diam gladian iga was still above normal, my biopsy was negative. Please does anyone have ideas or can help me out?? I'm so tired of hurting and no answers! White tongue, abdomen and back pain, bloating, tons of gas... 

[Scrapmanson]

Anyone?? 

[RMJ]

Since you did have a positive deamidated gliadin peptide IgA you could try a gluten free diet for a few months and see if you feel better.  You don’t need a doctor’s permission to do that!

[Scrapmanson]

1 hour ago, RMJ said:

Since you did have a positive deamidated gliadin peptide IgA you could try a gluten free diet for a few months and see if you feel better.  You don’t need a doctor’s permission to do that!

OK, I'll try anything at this point. Could that cause all these issues and pain? 

[Scott Adams]

Feel free to share your test results here, along with the reference ranges for positive. If you had a single positive test for celiac disease then you could have celiac disease. The normal process if you get a positive blood test would be to get an endoscopy to confirm celiac disease, and you would need to keep eating gluten until all testing is completed. If you feel that you can't eat gluten for a few weeks then perhaps just try the diet for a few months and see if your symptoms go away. Let us know how things go!

[Scrapmanson]

26 minutes ago, Scott Adams said:

Feel free to share your test results here, along with the reference ranges for positive. If you had a single positive test for celiac disease then you could have celiac disease. The normal process if you get a positive blood test would be to get an endoscopy to confirm celiac disease, and you would need to keep eating gluten until all testing is completed. If you feel that you can't eat gluten for a few weeks then perhaps just try the diet for a few months and see if your symptoms go away. Let us know how things go!

Here's my results, I already had endoscopy and it was negative. 

[Scott Adams]

I'll have to trust you on this...the text in the image is too small for me to read.

[Scrapmanson]

2 minutes ago, Scott Adams said:

I'll have to trust you on this...the text in the image is too small for me to read.

 tt iga neg

Tt igg neg 

Diam igg neg 

Diam iga pos 22.5 range <15

[Scott Adams]

It only takes one positive test for celiac disease for you to have it, so at this point you could keep eating gluten and ask your doctor to get an endoscopy to try to verify the diagnosis, or you could try going gluten-free to see if your symptoms resolve.

[Scrapmanson]

10 minutes ago, Scott Adams said:

It only takes one positive test for celiac disease for you to have it, so at this point you could keep eating gluten and ask your doctor to get an endoscopy to try to verify the diagnosis, or you could try going gluten-free to see if your symptoms resolve.

I did  endoscopy already, negative 

[Scott Adams]

Were you eating 2 slices of wheat bread or equivalent for at least 2 weeks before the endoscopy? If not your results could be a false negative. Did they take at least 4 samples?

The positive blood test result and your symptoms still means you could have celiac disease or non-celiac gluten sensitivity (there is no test yet for this).

[Scrapmanson]

4 hours ago, Scott Adams said:

Were you eating 2 slices of wheat bread or equivalent for at least 2 weeks before the endoscopy? If not your results could be a false negative. Did they take at least 4 samples?

The positive blood test result and your symptoms still means you could have celiac disease or non-celiac gluten sensitivity (there is no test yet for this).

Yes I was still eating gluten. There were more than 4 samples. 

[Scott Adams]

At this point it's up to you what you'd like to do. You mentioned you have "White tongue, abdomen and back pain, bloating, tons of gas..." but your doctor does not think you have celiac disease, and the one positive test you had plus your symptoms tells me you could have non-celiac gluten sensitivity which ~10x more people have than celiac disease, and if so a gluten-free diet should ease your symptoms. You might still want to go gluten-free to see if it helps. 

[GF-Cate]

On 9/7/2022 at 3:01 PM, Scrapmanson said:

OK, I'll try anything at this point. Could that cause all these issues and pain? 

If you have NCGS, it can definitely cause pain and many of the same issues as celiac. However, unfortunately, there is no official diagnostic testing for NCGS; it is a diagnosis of ruling other things out. If you've completed all of your celiac testing, it is certainly worth a try to go gluten-free and see how it makes you feel.

You may even want to do a trial of an eating style that eliminates more than gluten, such as the AIP diet or Whole 30, to eliminate as many allergens/irritants/inflammatory foods as possible and lower systemic inflammation for a few months (or more) to see how your body responds and if you get any relief.

On your other post with your endoscopy results, it looks like they identified Brunner’s gland hyperplasia if I am reading it correctly? Have you already met with your gastroenterologist about that and and whether it could be contributing to your symptoms (it's not something I've ever heard of and a quick google search doesn't yield much info)?

[Scrapmanson]

11 minutes ago, gluten-free-Cate said:

If you have NCGS, it can definitely cause pain and many of the same issues as celiac. However, unfortunately, there is no official diagnostic testing for NCGS; it is a diagnosis of ruling other things out. If you've completed all of your celiac testing, it is certainly worth a try to go gluten-free and see how it makes you feel.

You may even want to do a trial of an eating style that eliminates more than gluten, such as the AIP diet or Whole 30, to eliminate as many allergens/irritants/inflammatory foods as possible and lower systemic inflammation for a few months (or more) to see how your body responds and if you get any relief.

On your other post with your endoscopy results, it looks like they identified Brunner’s gland hyperplasia if I am reading it correctly? Have you already met with your gastroenterologist about that and and whether it could be contributing to your symptoms (it's not something I've ever heard of and a quick google search doesn't yield much info)?

Yeah he pretty much said it doesn't mean anything.... I'm at a loss. 

[Scrapmanson]

On 9/9/2022 at 3:43 PM, Scott Adams said:

It only takes one positive test for celiac disease for you to have it, so at this point you could keep eating gluten and ask your doctor to get an endoscopy to try to verify the diagnosis, or you could try going gluten-free to see if your symptoms resolve.

You say it only takes 1 positive test, does that include the deam gliaden aga? 

[Scott Adams]

I think you mean the DGP-IgA test. Please see this article:

Quote

The DGP-IgA test is considered to have high sensitivity and specificity. In general, the DGP-IgA test has been reported to have a sensitivity ranging from 75% to 95% and a specificity ranging from 90% to 100%. The DGP tests have been found to have a sensitivity of around 85-95% and a specificity of around 95-98%.

 

[Scrapmanson]

1 hour ago, Scott Adams said:

I think you mean the DGP-IgA test. Please see this article:

 

Thank you, I read thru it and it's so confusing. I'm not sure the difference or which test I got for the deamidated gliaden iga.... There's 2 that are similar in the group. 

1 DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide) blood test for celiac disease

2 Gliadin Peptide Antibody IgA (Immunoglobulin A)

My positive test from this post is diam gladian peptide iga. I also just tested more stuff a few days ago waiting on results because I haven't figured anything out. 

New test consists of 

Deamidated Gliadin Abs, IgA

Deamidated Gliadin Abs, 

t-Transglutaminase (tTG) IgA 

t-Transglutaminase (tTG) IgG

Endomysial Antibody IgA 

Immunoglobulin A, Qn, Serum result 152

[Scott Adams]

It looks like that is the test, but to be sure ask your doctor. The next step for you will likely be a follow up endoscopy/biopsy. Be sure to keep eating gluten daily until all of your tests are completed (2 slices of wheat bread's worth for at least 6-8 weeks before any blood tests, and 2 weeks before an endoscopy).

[Scrapmanson]

1 minute ago, Scott Adams said:

It looks like that is the test, but to be sure ask your doctor. The next step for you will likely be a follow up endoscopy/biopsy. Be sure to keep eating gluten daily until all of your tests are completed (2 slices of wheat bread's worth for at least 6-8 weeks before any blood tests, and 2 weeks before an endoscopy).

I've had 2 endoscopys over the past couple yrs, both negative. Still hunting for answers. 😢 

[Scott Adams]

Have you ever tried a gluten-free diet for a few months? ~10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

[Scrapmanson]

4 minutes ago, Scott Adams said:

Have you ever tried a gluten-free diet for a few months? ~10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

No I don't think so.... Does it cause extreme symptoms as well? 

[Scott Adams]

Yes, very similar to celiac disease for some people.