Possibility of Celiac Disease Misdiagnosis?

[TimmyATC]

Hello, I have been wondering lately if there may have been a chance of any type of misdiagnosis of Celiac Disease in me.  In April 2018 I had blood tests done for Celiac that came back positive and also had an Endoscopy done that same month that did show some damage to my small intestine.  I started a strict gluten free diet which I held to until about December 2018.  From that point I have never really worried about cross contamination.  I will eat at restaurants and not worry about things being cooked in the same oil or even being prepared in the same spaces.  Most times as long as the ingredients don't have gluten then I dont even worry about telling the waiters.  I will also not worry about grocery store items as long as listed ingredients do not contain gluten.  So I have been doing this for over a year now yet my Transglutaminase IgA Antibodies blood tests that I regularly get every 6 months have all showed normal levels of antibodies (around 2 U/ml).  When I was originally diagnosed I had over 160 U/ml.  I had recent blood work done last week which was normal as well.  I have never had an instance of "glutening" that so many people have talked about.  I feel pretty much the same as before I went on a gluten free diet.  Is it possible for the disease to have been misdiagnosed or possibly reversed itself?  Why have all my antibodies been normal while not worrying about cross contamination?  I am tempted to try a gluten challenge before my next blood test to see if my antibodies end up being elevated again.  Let me know what insights you may have about this.  Thank you so much!

[NNowak]

It sounds like the correct procedure was followed to diagnose you properly. Please understand that Celiac is an autoimmune disease. The serum tests available to us are not sensitive, which means a lot of damage is done before there is a positive result. When you keep poking the proverbial bear with careless habits, you will end up with additional health issues. Don’t base the validity of your diagnosis on the reactions of others. We all have our own biology and damage depending on how far along we were in our disease before it was caught. 
 

I’m not a proponent of living in a gluten-free bubble, but intentional/careless cross contamination is asking for trouble. Consider what you learn on this forum and apply what you feel is reasonable to your situation. It took 17 years after my Celiac diagnosis to develop another autoimmune disease. Now 25 years after the Celiac diagnosis I’m still trying to get to the bottom of this, but doing much better. I’m very sensitive so I have to be careful. I don’t wish additional health challenges on anyone, so I strongly encourage you to be more cautious. 
 

Be well!

[docaz]

Most likely, you are asymptomatic celiac which is a very good thing  because you are not suffering when you are accidentally eating gluten. Also, different people react to different amount of gluten. Some react to 200ppm and some to as little as 5ppm. FDA requires gluten free items to have less than 20ppm but there is some evidence that some react to as little as 5ppm. You might be fortunate to react to the higher amount. It might be worth discussing your first blood tests with your doctor to confirm both the blood test and the biopsy report. Damage to the small intestine can be caused by many things but the damage caused the celiac disease and particularly if it more than mild, it is easily recognizable by an experienced pathologist. 

[GFinDC]

False positives on the blood tests are rare.  False negatives are somewhat more common.  The gut damage didn't happen for no reason, right?  It was caused by something.  That something is most likely celiac disease.  Especially if you haven't had any continued problems or deterioration since going gluten-free.

Something you may not be aware of, is that additional food intolerances can develop.  Continuing gut damage can lead the gut to react to other foods besides gluten.  So some people lose the ability to eat foods like dairy, eggs, rice, corn, nightshades. soy, etc.  Silent celiac is the absence of GI symptoms while damage is going on.  Lack of symptoms doesn't mean damage isn't happening.

Edited February 10, 2020 by GFinDC