Increased Intraepithelial Lymphocytes

[Pat Jackson]

I was diagnosed with celiac in Feb of 2020, by biopsy.  6 months or so later, I had another biopsy, and it showed no celiac damage any more.  I was very excited!!  I am extremely careful, don't eat out, eat mainly whole foods, and cook everything myself.  However, I've had a lot of inflammation and gastritis that comes and goes, so the GI dr wanted to do another biopsy.  I just got the results back, and they were read to me by someone in the office (not the doctor) who could barely pronounce the words and didn't seem to even know I had celiac, so there was no point in questioning her.  It can be very hard to actually talk to the dr.  I can leave a message on the website, but it can take a long time to hear back unless its practically an emergency.  It said I still have the gastritis (not h-pylori) and also had an increase in intraepithelial lymphocytes, which I googled, so I have a vague idea what that means.  My question is this:  a few days before the endoscopy I got glutened somehow, and it was pretty miserable and dramatic.  I can't figure out what happened, since I made the meal myself and it was pretty much whole foods.  Could this single incident cause the biopsy finding or does it take more than one incident to cause it?  Now I'm worried that I may be getting more than I think, without realizing it.  I don't want to be on the way to the awful problems I had before going gluten free.  

I know I seem to be pretty sensitive.  I had one incident where I forgot and put my gluten free bread in the household toaster.  Disaster.  Another incident where it took a lot of detective work on my part, but I found out a new bottle of vitamins wasn't gluten free.  Another disaster. 

[Scott Adams]

Not to scare you but the increase in intraepithelial lymphocytes can be a warning sign for refractory sprue/refractory celiac disease, which is a more dangerous condition. We've done some article on this that you may want to read:

https://www.celiac.com/search/?&q=intraepithelial lymphocytes&type=cms_records2&search_and_or=and&search_in=titles 

From what I've read, many, but not all, with refractory celiac disease are actually getting gluten contamination in their diets, so they are not being 100% gluten-free. I think your approach here is correct, and looking very closely at your diet and everything you ingest is the first step. Since your villi recovered so quickly before, I suspect you'll bounce back again.

Let us know how it goes!

PS - Be sure to follow up with your doctor about the increase in intraepithelial lymphocytes, and what it means! 

[Pat Jackson]

Thanks, Scott.  I appreciate the response and I will take a look at the article.  

[ViolaRose]

Are you possibly being exposed to airborne allergens? My mouth and tongue swell whenever someone cooks wheat products. I had a particularly bad flare when someone was baking, dusted off his hands and it went in my face. 3 months of suffering from a face full of wheat. I have to avoid flour bags at the grocery store and wear a mask at restaurants. We have a toaster oven separate from my oven for people to cook their meals. 

[trents]

That sounds more like an allergic reaction than a celiac episode. Different immune system pathways.