Confused and Frustrated By Drs / Endoscopy

[kiriaussie]

For the last several months I have been trying to get answers about my stomach issues. 

I had a positive DGP IGG result, other markers were negative (TTG IGA, IGG, DGP IGA)

Today I finally had an endoscopy to see what is going on. Dr took biopsies to test for celiac but said that duodenum looked normal. I understand some people have damage that wont be seen until they look at the biopsy so I am just waiting to confirm with the results.

He did however see that I have grade B esophagitis and has prescribed me a PPI. When I asked how long I should be on this he was vague and even told me some people are on them for the rest of their lives! I asked what could cause it and he was again really vague, mentioning cutting out caffeine, alcohol, tomatoes etc (all stuff I have done that has not stopped the pain I have been in or the constant acid reflux). I have no interest in staying on pills for the rest of my life and I want to know what caused this in the first place! I have also heard horror stories about PPIs. 

I have tried to enquire about if I could be IGA deficient. Both my GI NP I saw a few weeks ago and the GI Dr doing my endoscopy today brushed this off. They also told me to basically ignore the DGP IGG result and both said it was really outdated. 

I am feeling so confused because I understood the DGP IGG to be a more recent test that has been catching some people with Celiac who don't test positive for the other antibodies.
They don't seem to know a whole lot about Celiac testing and neither of them seemed to even recognise the DGP IGG test.
I have also read that it is incredibly specific and false positives are very rare?? So my question is, if this test doesn't mean I have celiac, what does a positive DGP IGG result mean?

They are also having me do a SIBO test. 

Is it true that DGP IGG should just be dismissed?

[Sabaarya]

On 3/14/2022 at 12:45 PM, kiriaussie said:

For the last several months I have been trying to get answers about my stomach issues. 

I had a positive DGP IGG result, other markers were negative (TTG IGA, IGG, DGP IGA)

Today I finally had an endoscopy to see what is going on. Dr took biopsies to test for celiac but said that duodenum looked normal. I understand some people have damage that wont be seen until they look at the biopsy so I am just waiting to confirm with the results.

He did however see that I have grade B esophagitis and has prescribed me a PPI. When I asked how long I should be on this he was vague and even told me some people are on them for the rest of their lives! I asked what could cause it and he was again really vague, mentioning cutting out caffeine, alcohol, tomatoes etc (all stuff I have done that has not stopped the pain I have been in or the constant acid reflux). I have no interest in staying on pills for the rest of my life and I want to know what caused this in the first place! I have also heard horror stories about PPIs. 

I have tried to enquire about if I could be IGA deficient. Both my GI NP I saw a few weeks ago and the GI Dr doing my endoscopy today brushed this off. They also told me to basically ignore the DGP IGG result and both said it was really outdated. 

I am feeling so confused because I understood the DGP IGG to be a more recent test that has been catching some people with Celiac who don't test positive for the other antibodies.
They don't seem to know a whole lot about Celiac testing and neither of them seemed to even recognise the DGP IGG test.
I have also read that it is incredibly specific and false positives are very rare?? So my question is, if this test doesn't mean I have celiac, what does a positive DGP IGG result mean?

They are also having me do a SIBO test. 

Is it true that DGP IGG should just be dismissed?

Hi. All my celiac panel blood work were negative except genetic panel and I have Marsh 3A score,which is mild atrophy of my duodenum and also mild acid reflux and gastrities.My doctor said positive biopsy and positive genetic panel consistent with celiac disease. Maybe you have Marsh 1 stage where there is very minimum damage to intestine and it’s not visible. Have you had genetic panel? I’m 39 and I had PPIa for very long time in my life. Before my celiac diagnose I did started acupuncture and it made a huge improvement in my GI symptoms especially heartburns,almost gone and after GI not had a single heartburn situation…

[Meep]

On 3/17/2022 at 2:04 AM, Sabaarya said:

Hi. All my celiac panel blood work were negative except genetic panel and I have Marsh 3A score,which is mild atrophy of my duodenum and also mild acid reflux and gastrities.My doctor said positive biopsy and positive genetic panel consistent with celiac disease. Maybe you have Marsh 1 stage where there is very minimum damage to intestine and it’s not visible. Have you had genetic panel? I’m 39 and I had PPIa for very long time in my life. Before my celiac diagnose I did started acupuncture and it made a huge improvement in my GI symptoms especially heartburns,almost gone and after GI not had a single heartburn situation…

I've been curious about acupuncture for GI issues. How many appts did you go to when you saw improvement (are you doing maintenance plan as well)? 

[Michele2977]

I don’t know if this will help you, but I was diagnosed with celiac unexpectedly after going to a GI doc for severe heartburn. He prescribed two meds (omeprezole and famotidine, both 40mg) in Feb. 2020 and ordered an endoscopy to evaluate possible damage from the heartburn. That was delayed because of COVID, but finally in summer 2020, it showed that I was a 3B on the Marsh scale. He then ordered celiac bloodwork (no reason to suspect it before). All my IgA was always low and almost undetectable. My IgG was literally off the charts (I don’t have the exact numbers in front of me). My first GI doc was the one who suspected IgA deficiency after the second time he ran bloodwork. Not sure why he didn’t mention it the first time (I had no idea what that was to even ask). After doing some homework on my own, I went to an immunologist who ran a ton of bloodwork because of the suspected deficiency. My IgA deficiency was confirmed in April 2021. I have since changed GI doctors (no issues with the first one, but I went to someone who is more of a celiac specialist in my area). I had a repeat endoscopy in the summer of 2021 and it was completely normal (yay me), but my IgG levels are still slightly elevated. They have come down significantly, but not quite normal, which, from the journal articles I’ve read, can take up to 2 years…I’m on track to have normal bloodwork about two years post diagnosis if I keep going the way I have been. My IgA still gets checked, but I think it’s just standard celiac panel. It’s pretty much a useless number for me and my doctors. 
 

The TL:DR version…find an immunologist to do bloodwork to investigate the possible IgA deficiency, don’t let your GI doctor dismiss your questions, and do a lot of homework on your own. 
 

Good luck on your journey!!

[Sabaarya]

11 hours ago, Meep said:

I've been curious about acupuncture for GI issues. How many appts did you go to when you saw improvement (are you doing maintenance plan as well)? 

Since I do have chronic issues with my stomach, I do usually have 3 times acupuncture during a year and each time it’s 10-12 courses . It’s like medication,you should have it long time period to see improvement…

[Phyl]

On 3/14/2022 at 1:45 PM, kiriaussie said:

For the last several months I have been trying to get answers about my stomach issues. 

I had a positive DGP IGG result, other markers were negative (TTG IGA, IGG, DGP IGA)

Today I finally had an endoscopy to see what is going on. Dr took biopsies to test for celiac but said that duodenum looked normal. I understand some people have damage that wont be seen until they look at the biopsy so I am just waiting to confirm with the results.

He did however see that I have grade B esophagitis and has prescribed me a PPI. When I asked how long I should be on this he was vague and even told me some people are on them for the rest of their lives! I asked what could cause it and he was again really vague, mentioning cutting out caffeine, alcohol, tomatoes etc (all stuff I have done that has not stopped the pain I have been in or the constant acid reflux). I have no interest in staying on pills for the rest of my life and I want to know what caused this in the first place! I have also heard horror stories about PPIs. 

I have tried to enquire about if I could be IGA deficient. Both my GI NP I saw a few weeks ago and the GI Dr doing my endoscopy today brushed this off. They also told me to basically ignore the DGP IGG result and both said it was really outdated. 

I am feeling so confused because I understood the DGP IGG to be a more recent test that has been catching some people with Celiac who don't test positive for the other antibodies.
They don't seem to know a whole lot about Celiac testing and neither of them seemed to even recognise the DGP IGG test.
I have also read that it is incredibly specific and false positives are very rare?? So my question is, if this test doesn't mean I have celiac, what does a positive DGP IGG result mean?

They are also having me do a SIBO test. 

Is it true that DGP IGG should just be dismissed?

 

[Phyl]

Just now, Phyl said:

 

I’d run from those doctors. Find a doctor trained in nutrition and who will hear you!

it was 10 years for me and all the docs told me I was fine. Nope have Celiac 
the most knowledgeable doc I’ve found is Dr Peter Osborne in Sugarland Texas

He has utube classes On Monday evening and answers questions Or if you can afford a visit he takes patients. He’s been my go to doc for two years and has answers🙏