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I just got back from upper GI.  My gastro doc retired in June, so I had to use another doctor, one that he recommended and trained, someone who supposedly knows celiac.

I've been gluten-free for about 20 years, putting aside being diagnosed nearly 70 years ago, but told I outgrew it at puberty.  When I had my first upper GI and blood work in the early 1990's, it confirmed celiac.  When I had it redone 10 years ago, my former doctor said it showed complete healing.

But despite having a normal battery of bloodwork in July, and no symptoms at all, in fact, I'm doing very well, the new gastro said that today, the villi were flat and atrophied.

So now, I'm trying to decide if I should panic or not.  He said he goes by nutrition and health, and that I'm doing well.  But I'm concerned about the increased chance of cancer, etc.

I won't have a follow up phonecall or visit from him until the biopsies come back, but this is truly puzzling.  And my angst may be premature. But I'm already pushing the panic button.  My first reaction is to get another doctor, one of the celiac gurus.  My second is to accept his statement that what he saw may be my "normal".  I'm going to ask him to look at the digital pictures in my file from 10 years ago, assuming they were included when the files were transferred, and compare them.  

I'm a perfectionist and don't like anything being abnormal, if I can help it.  He said this didn't look like a sudden glutening, but like...well, that's just the way my upper intestines are. Nothing looked inflamed.

I'll probably get flooded with advice, but I'm interested in hearing from those listmates who have experienced the same thing...and what you did about it.  I get the impression, there is no healing from this.  Please, newbies and kind folks who sympathize, but haven't experienced this....no response requested.  

This is a new normal for me, and I don't like it.  I do NOT cheat.  I do travel, and don't plan on stopping.  I do eat out, and don't plan on stopping.  I usually know when I've been accidentally glutened...and consider it rare. My old GI mentioned that he had this happen with another patient and it turned out the gluten was hidden in a daily pill, but supposedly, my medications, toothpaste, toiletries (I don't wear make-up), etc. are all gluten-free, so I am puzzled. I don't eat a lot of processed foods....or even baked goods, gf or otherwise.  I'm big on natural, whole foods and cooking from scratch.  This had to have been long term.  Oddly enough, when I get glutened, I get lactose intolerant briefly....and I'm not lactose intolerant at the moment.  Really weird...or not?

Thank you.

Lin
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