Chance of false positive?

[Phosis]

So here is my story...I am 33, started having really bad digestive issues after a flu early last year. Indigestion, cramps, diarrhea. My stomach has always been sensitive, but this was a whole new mess, and so I want to multiple appointments with my GP, including blood work that I didn't know was looking for celiac (my mother is celiac as well) The doctor determined I had IBS. And after a few months, the issues subsided for the most part, though I would still have indigestion sometimes when having coffee, and the occasional bout of loose stools. I also believe my stomach processes are highly tied to stress.

I had things mostly under control from about august last year until october this year. The only thing that developed during that time was lactose intolerance, which seems to worsen as time goes on. And occasionally, very fatty foods will cause me issues as well, and send me to the bathroom fairly urgently.

Anyways, in October, things were normal, but I had a bad bout of diahrea after some food that didn't sit right (which I can't even remember now) and there was some blood. I was sent for a colonoscopy, and it was determined that it was a hemmy - everything else was clear. But my GI doctor noted that I had a positive TtG IgA test of 25, and that she thought I may have celiac so I was scheduled for an endoscopy.

Well, the stress of this sent my system into overdrive, and I have been dealing with a lot of indigestion issues. During the endo, it was discovered that I had a Schatzki Ring, but visually, no other issues were seen. Biopsies were taken.

Given my issues and bloodwork, is it likely that my results are negative? I am still waiting for biopsies, and she has still ordered me to eat gluten free. I do notice my symptoms are beginning to calm down a little after a week, but it could also be due to my stress levels decreasing. I can be a bit of a hypochondriac in the sense that I obsess over symptoms and that sends me into a tail spin and gets me worried about other more deadly things. But if there was no damage visible during endocsopy, I am now wondering what the diagnosis will be...

Thanks

[Ennis-TX]

First this disease is genetic, if your mother has it then you can develop it at any point in your life, many find a illness or bout of stress activated the gene.
Lactose intolerance is common with this disease as the tips of the villi produce the enzymes to break it down. So as it progresses many lose the ability to digest lactose, it does sometimes come back with healing.
You had positive blood test on one test, even if your biopsies come back clean you should consider a full panel or going gluten free anyway and seeing how many issues resolve.
Biopsies, your intestines splayed out have the area of a tennis court...they are taking tiny biopsies and looking under a microscope. If your damage is patchy still then they might miss it.

Now on the bright side, anxiety, indigestion, loose stools, and D are all known symptoms of celiac, and many if not all could resolve in 6 months to a year of a gluten free diet (assuming your not exposed often)

[Phosis]

Thank you for the response. I have been looking it up and I did test positive, and it seems like false negatives are not very common. I will make sure even if the results are negative that they keep looking for reasons, but it sounds like I am on the right track to stay on a gluten free diet as it does seem to be having some effect. This makes me feel much better actually talking to someone else. 

[cyclinglady]

If your GI used an older scope, your small intestine might look just fine (like mine did).  But the proof is in the biopsies.  There is a chance that damage areas could be missed as Ennis suggested.  I think your GI is most likely diagnosing you a bit early with a family history and a positive TTG.  But for those who are reading this response, you should wait until you get the biopsy results before going gluten free.  Lab results can get misplaced or damaged.  Who would want to go back on gluten if they had to do a repeat blood test or biopsies?  Not me!  Celiacs tend to react even more, once you have gone gluten free.  

New Mayo study shows that 44% of first-degree relatives (parents, siblings, kids) have celiac disease even if symptom free!  

https://www.news-medical.net/news/20190822/Mayo-Clinic-Study-Calls-For-Screening-Of-Family-Members-Of-Celiac-Disease-Patients.aspx

[Phosis]

Thanks.

My problem is I work a full time job and just to manage the systems properly, going gluten free seems to have been a necessary change. It was so bad I missed a week and a half of work. While I am certainly still having issues, things seem to be calming down significantly for me now. But who knows what will happen going forward!

[cyclinglady]

1 hour ago, Phosis said:

Thanks.

My problem is I work a full time job and just to manage the systems properly, going gluten free seems to have been a necessary change. It was so bad I missed a week and a half of work. While I am certainly still having issues, things seem to be calming down significantly for me now. But who knows what will happen going forward!

I would be shocked if your biopsies do not show damage.  Not with a mother with celiac and an elevated TTG.  Not sure of  the lab range. If it is slightly above the normal range, an elevated TTG could be attributed to another illness like Crohn’s.  My niece had celiac disease firmly out (full blood panel: TTG, DGP, EMA) and biopsies.  Still having issues, her fourth GI ordered a pill camera and found damage beyond the reach of both scopes.  She knows she can still develop celiac disease and should be re-screened.  Just like my kid who has been screened twice in the last six years, but does not have celiac disease as of now.   

Feeling good so soon on the gluten-free diet tells you so much.  Gluten is not for you.  

Edited December 3, 2019 by cyclinglady

[Phosis]

An update: my doctor confirmed celiac. I do not have all the details in front of me but "total vilious atrophy" or something like that. And also chronic gastritis. H pylori biopsy negative. Had extensive bloodwork checking liver pancreas and gallbladder and no issues there or anywhere else. So it looks like I have my answer.

I am mostly okay with it. I don't like that my family will have to deal with asome of the necessary lifestyle changes. But I have always looked at food as fuel and never really been motivated to eat out of pleasure. That said I realize I probably have a long difficult road of adjustment, specifically due to things such as cross contamination. So the annoyance factor is certainly high. Plus of course I am still uncomfortable and there are many food sensitivities I have developed that I need to tread lightly around.

Either way here we are!

[cyclinglady]

Welcome to the club that you never wanted to join! ? At least take comfort knowing you have a diagnosis.  So many people do not know.  ?

Research is your best defense.?  Learn all that you can about avoiding gluten.