When Is It The Proper Clinical Context?

[NoGrainNoPain]

Just in the midst of a gluten challenge for two months now. My old friends diarrhea, bloat and bad gas are back along with reflux...which I didn't realize I had until it was gone, and eczema. There's a newbie though—migraines. My IgA test was negative before going gluten free, but my MD thought I should try the diet anyway. It was great, but I was shocked at my sensitivity to cross contamination. Not convinced that I didn't have celiac, I went to a GI specialist...who coincidently does not specialize in calling patients back with a diagnosis. 

 

Pathology report says that I have esophagitis from chronic reflux, reactive gastritis and increased leukocytes in my duodenum..."see note below". The note below reads: "the findings of the duodenal biopsy reflect gluten sensitive enteropathy in the proper clinical context." I don't have cancer, no ova nor parasites. The nurse called me back, said I had reflux and everything was fine. Since I had privileged information I asked her about the pathologist's note. She hadn't seen the note. She said, "well, you don't have celiac's. You're not having symptoms are you?" Hello, anyone home????

 

Gluten sensitive enteropathy is celiac disease. My IgA panel was negative, but I was mostly gluten free three to four weeks before mostly because I was too sick to eat anything. I ordered a genetic test, and it hasn't come yet. I have the leukocytes...not sure how many, don't know what the crypts look like. I have experienced improvement on a gluten-free diet. Is that enough for the proper clinical context? Still eating gluten and thinking about doing another IgA panel...but I'm basically over it. Wish the MD would call back. He must be skiing. 

[NoGlutenCooties]

Hi and Welcome to the Forum!

 

I have no idea what "In the proper clinical context" means.  But the nurse who thinks you can't have Celiac because you don't have any symptoms is completely uninformed and doesn't know what she's talking about.  Many folks with Celiac are completely asymptomatic.  I was one of them.  My biopsy showed moderate to severe villi damage.

As long as you're doing the gluten challenge I would go ahead and get retested.  But even if the tests come back negative (and make sure they do the full panel of tests) if you stop eating gluten and your symptoms go away again then you have your diagnosis.  It could be Celiac or non-Celiac gluten intolerance but the end result is the same.  No gluten.  Ever again.

 

Oh... and the genetic tests don't really say much.  Approx. 30% of the population has at least one of the genetic markers for Celiac but only about 1% of the population has it.  And there are one or two people on here who tested negative for the genes but do have Celiac.

 

Good luck.

[BlessedMommy]

Be very, very careful with doing your gluten challenge!

 

My chronic severe headaches while doing my gluten challenge progressed to neurological complications such as difficulty speaking and numbness on my right side. When I got to the hospital, they diagnosed it as a TIA. I quit gluten and have never had another one since.

 

Just be careful and take care of yourself!