What is the difference between Seronegative Celiac and just Celiac?

All patients in this study were diagnosed with celiac disease, but some via biopsy only, rather than both positive blood tests and biopsy. This study seems to indicate that NSAIDs and PPIs may somehow affect, or mask the antibody levels that should normally show up in the blood of those with celiac disease, but more research needs to be done to determine exactly what is going on. Perhaps these drugs are actually treating active celiac disease in some patients, and diminishing the autoimmune reaction? Hopefully we'll see follow up studies done on this.

This happened to me, I was beyond sick and tired with terrible stomach issues but came up negative. Took many ibuprofen/ excederin type medications at the time. as well as PPI

I was on a PPI for 17 years for GERD. This summer I was diagnosed with SIBO and treated and then later an endoscopy showed mild villi blunting suggesting possible celiac but then tested negative on the blood tests. In the mean time my stomach acid issues came back and my GI doc put me back on the PPI. Having lots of nausea. Is it possible the PPI caused my possible celiac and if so is going back on the PPI could it make the celiac worse and be the source of my nausea? 

Interesting hypothesis, and it's possible, but it would be close to impossible to verify this. We now know that PPI's were way overprescribed, and now that they are OTC, overused. I think they can be dangerous and should not be OTC. They can relieve symptoms of things like CD, and apparently make CD more difficult to diagnose, yet the risks associated with CD would likely still be the same. 

On 2/24/2021 at 1:46 PM, pokey449 said:

I was on a PPI for 17 years for GERD. This summer I was diagnosed with SIBO and treated and then later an endoscopy showed mild villi blunting suggesting possible celiac but then tested negative on the blood tests. In the mean time my stomach acid issues came back and my GI doc put me back on the PPI. Having lots of nausea. Is it possible the PPI caused my possible celiac and if so is going back on the PPI could it make the celiac worse and be the source of my nausea? 

On 2/24/2021 at 5:04 PM, Scott Adams said:

Interesting hypothesis, and it's possible, but it would be close to impossible to verify this. We now know that PPI's were way overprescribed, and now that they are OTC, overused. I think they can be dangerous and should not be OTC. They can relieve symptoms of things like celiac disease, and apparently make celiac disease more difficult to diagnose, yet the risks associated with celiac disease would likely still be the same. 

Pokey,

As Scott said, you probably couldn't prove it but it is an intriguing hypothesis...I have been trying to highlight these same points for years now.....

I see in another thread Beverage gave you some good advice.

Here is my Posterboy blog post that argues that indeed Low/NO stomach acid is the trigger for NCGS and maybe Celiac disease...at least in part.....(I have learned to say over the years, in part)

It (Low/NO) stomach in Celiac's has been studied before but because it is 30+ years old....nobody believes it anymore.....(if they ever did)

Here it is entitled "Gastric morphology (IE Low/NO Stomach Acid) and function in dermatitis herpetiformis and in Celiac disease"

Open Original Shared Link

I hope this is helpful but it is not medical advice.

Good luck on your continued journey......be your own best advocate and keep searching for answers!

They are out there! And for me Low/NO stomach acid going undiagnosed/Misdiagnosed was an important part of my journey!

Posterboy,

Thanks Posterboy for the comments and links. I know I’m driving my GI doc nuts by bugging him to figure this out. Maybe that’s an impossibility. Night before last I was awake all night with terrible nausea cramping and gas. I was convinced my SIBO was back. Last night I slept a continuous 7 hours and only have a mildly upset gut this morning. I just can’t figure all this out. I guess it’s a journey as you say, but with many bumps along the way. I think I understand the science of it all and then I don’t. Frustrating. 

I got my ALCAT test results and am now trying to make some of the biggest dietary changes since I went gluten-free more than 25 years ago. I will be doing an article that details my experience. It’s only been 2 days, but I’m noticing a difference. 

On 2/24/2021 at 2:46 PM, pokey449 said:

I was on a PPI for 17 years for GERD. This summer I was diagnosed with SIBO and treated and then later an endoscopy showed mild villi blunting suggesting possible celiac but then tested negative on the blood tests. In the mean time my stomach acid issues came back and my GI doc put me back on the PPI. Having lots of nausea. Is it possible the PPI caused my possible celiac and if so is going back on the PPI could it make the celiac worse and be the source of my nausea? 

SIBO is a cause of "mild villi blunting" by itself--independent of Celiac disease---so, at least to me, it is not clear that you ever had celiac disease and rather it was the PPIs that caused your SIBO that then led to the mild villous blunting, and now why do you have nausea or is that what you are calling "GERD" and why you were on PPIs or is it a new symptom?

I will read the article more closely but for now I am uncertain of its significance----one conclusion that could be drawn is that the older you are the more likely you are to take ASA/NSAIDS or PPIs, but that may be true whether or not you have celiac disease; the discovered association of these meds with seronegative Celiac disease is based upon a total of just 12 patients---and it was only about 50:50 that these 12 patients were even using the meds---I would not want to draw any conclusions based on those numbers.  Another point is they found that 7% of their patients had seronegative celiac disease which is a bit higher than the percentage I have seen in the literature---more like 2-3%---and they did not specify in the text(at least I did not find it)-that these patients responded both clinically and histologically to a GFD, so are they certain they all truly had seronegative Celiac disease?---I guess that is a question to pose to the authors---admittedly all of whom are recognized celiac experts

35 minutes ago, Guest ANTHONY COLATRELLA said:

SIBO is a cause of "mild villi blunting" by itself--independent of Celiac disease---so, at least to me, it is not clear that you ever had celiac disease and rather it was the PPIs that caused your SIBO that then led to the mild villous blunting, and now why do you have nausea or is that what you are calling "GERD" and why you were on PPIs or is it a new symptom?

I was put on PPIs back in 2003 when I had H pylori and esophagitis (GERD). Nausea at the time was not an issue. I was kept of PPIs for the GERD and gastritis which became less of an issue with time. They kept me on the PPI for 17 years because supposedly "I needed it" per my docs to prevent getting Barretts. Fast forward to early summer 2020 when I was diagnosed with SIBO. I started having nausea before that diagnosis. After I learned PPI cause SIBO I tapered off the PPI. The SIBO was treated successfully wit Xifaxan, but the nausea remains. My current GI doc thinks the nausea is from to much acid, yet he says any acid rebound from getting off the PPI should have ended soon after getting off the PPI. SO, I don't know what's causing the nausea for sure. To much acid, not enough? Has the SIBO come back?? Its all one big mystery to me. I just know I'm sick n tired of it. That said I tend to think the PPI caused the SIBO which caused the villi blunting as you suggest. Im not convinced I am celiac as no one in my family is and I think it would have shown up ,ong before now, I am 72. 

4 hours ago, pokey449 said:

shown up long before now, I am 72.

Have you been tested for Celiac Disease or have your doctors simply dismissed it offhand or not thought of it? What other prescriptions are you taking and what are the side effects? You've been complaining about what appears to be ongoing gut issues since at least 2003. If you cannot get tested, try a Gluten Free Diet for at least a month. it isn't that hard once you decide that your health is more important than your pride.  Read other posts on the site.

5 hours ago, Guest ANTHONY COLATRELLA said:

I am uncertain of its significance

Any discovery concerning celiac disease has significance. Even if its only that NSAIDs mess with test results.