Diagnosis

[GlutenFreeAustinite]

So I had a negative biopsy today (four total taken from my duodenum), and my doctor has diagnosed me as gluten sensitive, which I prefer to call Non-Celiac Gluten Intolerance. I get the impression he doesn't take it as seriously (in fact, he told me that once I feel better/recover from the three months of gluten challenge, I can probably eat some small amount of gluten). I disagree with this. Is it possible to have a negative biopsy and still have celiac? Is he right about being able to eat gluten with NCGI?

I'm so done with western medicine diagnostic tests. I'm planning to go see a naturopath because I believe I have some underlying condition, between chronic yeast, chronic skin infections/susceptibility to infections in general, and the fact that he doesn't seem to take NCGI seriously, I need someone who will look at me as a whole person.

[IrishHeart]

Before I answer, weren't you gluten free for many years? (I seem to recall this from your other posts)

[GlutenFreeAustinite]

I was gluten-free for roughly 18 months but then started a challenge that lasted almost three months.

[IrishHeart]

Well, given all the variables of testing

--labs make errors sometimes

--4 samples may not have been enough

--he missed the areas that are affected

sure, the biopsy could be "wrong"

OR

you have celiac, but not much villous atrophy (yet)

OR

you do, in fact, have NCGI.

This condition causes many of the same symptoms as celiac.

FWIW, Dr. Fasano, a leading celiac researcher recognizes NCGI as a serious condition.

I think the important question is:

How did you FEEL on the gluten challenge?

If you felt awful every day, then gluten is an issue for you

and you should avoid it.

[GlutenFreeAustinite]

I felt awful. There were days when I wasn't "so bad" but I definitely wasn't normal. I accept completely being NCGI, and I am glad that it's taken seriously (or starting to be). I did get upset when my doctor told me a little gluten was okay...I happen to disagree, as I am sensitive to small amounts of gluten, or at least was when I was gluten-free. So I know what my future is, it's just frustrating because it's not black and white. I'm not typically a black and white person, so I guess I should be used to it!

[mushroom]

Was the biopsy result from the pathologist or just from your doctor and what he saw? There's a big difference!!

[GlutenFreeAustinite]

Apparently it was the pathology report. He took tissue biopsies and I don't think he reads them.

[Raisingwhirlwinds]

My response is as follows

1. Always take the advice of doctor's with a grain of salt (as you have done). There is is so much information for drs to keep up with that sadly they are not always as knowledgable as we would expect/hope.

2. Its possible that 3 months wasn't long enough for you to show enough damage to your villi. When I was 10 I had a positive biopsy, then I was placed on the gluten-free diet for 3 months, new biopsy showed healing. Then i was put on a challenge test for 3 months and tested again. The result was a negative biopsy. I ate gluten without major problems for another 11 years until I ended up completely run down, low iron etc ( it was like chronic fatigue) and finally diagnosed again with biopsy again at 21.

Obviously you are not about to put yourself through the challenge process again so whether you want to call it Celiac or not I would highly recommend you stick 100% to the Gluten Free diet. With the risks of eating gluten for Celiacs including osteoperosis and bowel cancer my personal opinion is that its just not worth the risk.