Ambiguous Results?

[BeegYoshi]

I have been gluten free since I was a toddler since I had a very nasty reaction to gluten when solid foods (e.g. sandwiches, cookies) were being introduced to my diet. 

Only recently (~18 years gluten-free) have I decided to get tested for celiac as I have other health problems I want to figure out and this is sort of the first step to figuring out what's wrong. 

Around August of last year I got the blood test done following 3 weeks of a gluten diet and the results were ambiguous according to my doctor. I had very elevated IgG levels (89) but my IgA level was normal (0.5) and they said I was not IgA deficient. (This confuses me as I had thought .8-2.8 was the normal range for adults and 0.5 would make me deficient but I'm also not a doctor)

Following this I was told to have an upper endoscopy/biopsy done and I did 3 months of a gluten diet this time eating 2x as much gluten as I did before to ensure results (this was recommended by my gastroentrologist). That was about 2 months ago and I just got the results of that test back. They said my small intestine looks totally normal, they looked in several places and the villi are fine and there's no evidence of damage.

I asked what that meant for me and they essentially said that they can't be certain and all they can say is gluten definitely makes me feel bad so just keep on the gluten-free diet. They said I can try genetic testing if I want but given that it's $900 where I live that's not a possibility for me.

 

I'm kind of confused and frustrated, this whole ordeal took 6 months and I'm basically exactly where I started but now I'm out a few hundred dollars.

Has anyone had a similar experience or has any advice as to where to go from here?

[Scott Adams]

Welcome to the forum! 

The standard recommendation for a gluten challenge would be to eat around 2 slices of wheat bread daily for 6-8 weeks before a blood test, and 2 weeks before an endoscopy, so it's not clear if you were eating enough before your blood tests. You mentioned that you "had very elevated IgG levels (89)," so you had one positive blood test for celiac disease. One positive test does mean that you could indeed have it, even though your biopsy was normal.

Either way, how did you feel when you ate gluten? Did you have any symptoms?

Around 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn't a test for NCGS. It sounds like you may be in this category, but only if you are having symptoms when eating gluten that go away when you go gluten-free.

[trents]

Ditto to what Scott said.

[frieze]

Request the report from the pathologist that read the slides.