I’m so confused! Latent celiac disease?

[Tall Holly]

I’m on a journey to figure out my stomach issues. They began in 2018 and I had an endoscopy showing chronic inflation of my stomach and esophagus. Took medication and went in my merry way. I also had a celiac disease blood test at that time which was negative. 
 

Fast forward to January 23. I had a terrible bout with covid GI and have been battling issues ever since. I went back to my GI group and saw a new doctor. She looked up my old endoscopy and asked if I knew I had gluten sensitivity. I told her I had no idea and she responded “some doctors don’t believe in it so they may not have said anything.” I didn’t really think much of it and we started all of our testing. 
 

My first round of testing results came in today. Negative for h pylori, parasites, and pancreas looks great. Endoscopy is scheduled for next month. I asked for a copy of my 2018 report and was taken back. The pathologist suspected celiac disease so sent it off for immunohistology, which also indicated potential celiac disease. The villi are fine but I have interepethial lymphocytes and the Immunohistology differential diagnosis was “latent/potential celiac disease.” 
 

I literally have every sign symptom of celiac disease, down to the rash and enamel issues. Has anyone had a negative blood test and biopsy results like mine? I’m in so much pain and just want answers. 
 

 

[Russ H]

Do you know what your blood test results were?

[Tall Holly]

10 minutes ago, Russ H said:

Do you know what your blood test results were?

My tTg was 1 and my immunoglobulin A was 210. 

[trents]

There are a number of other antibody tests that can be done for celiac disease that have not been run in your case and should be. No DGP tests were run and an EMA was not done. Here is a link:

Also, some experts believe that NCGS (Non Celiac Gluten Sensitivity) can be a precursor to celiac disease.

[Scott Adams]

Be sure to keep eating gluten daily until all celiac disease testing is completed. Positive endoscopy results are the gold standard for celiac disease, so if your results were positive then you most likely do have it. If your symptoms go away on a gluten-free diet this would provide further confirmation.

[Anodyne WindWalker]

2 hours ago, Scott Adams said:

Be sure to keep eating gluten daily until all celiac disease testing is completed. Positive endoscopy results are the gold standard for celiac disease, so if your results were positive then you most likely do have it. If your symptoms go away on a gluten-free diet this would provide further confirmation.

I have wondered about the safety of this method but I can also certainly see why it needs to be done in order to find the celiac diagnosis that sometimes very efficiently hides itself.

The reason I wander is because of how sick eating gluten can make someone with celiac disease. I accidently got gluttoned rather badly last night in the 1st time since I have been gluten free when I got my diagnoses of celiac disease in September 2022. Since then I have been eating a very strict gluten free diet. Well because of accidently getting gluttened last night I have been in bad shape today. 

Laying on the bathroom floor to be close to the toilet and barf bucket, real weak, belly pains,headache, joint pain etc. 

Would 2 weeks of eating gluten about kill a person if they truly do have undiagnosed celiac disease?

Im just curious is all 😉

For years, before by celiac disease diagnoses I had been eating a low gluten diet without meaning to because I realized that those gluten free or low gluten foods didn't seem to make me as sick. I blamed it on my chronic pancreatitis, liver issues, gastroparesis, chronic gastritis and sever pancreas insufficiency. I'm also a very brittle type 1 diabetic. I didn't pay attention to the gluten in the food but now that I look back I ate lots and lots of rice with veggies & fruit in it because there was less painful repocations after eating those foods whereas foods with gluten hurt me but I didnt put the pieces together until later on when things got much worse.

[trents]

The endoscopy itself is not unsafe nor is it particularly unpleasant. In the USA it is usually done under conscious sedation. You won't even remember it.

Once you have been off gluten for a consideralbe time period it is typical to have stronger reactions once you try to go back on for testing. It might help some to reintroduce it gradually.