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Hello all,

I hope someone can help me with this. I had an upper endoscopy this morning.
After the procedure my doctor said that there was "no way" I was following
the diet, because she could see lots of damage.  I was first diagnosed 1
year and 2 months ago, and have been gluten free ever since. I have never
cheated on the diet. When I was diagnosed, I had the classic
gastrointestinal symptoms, and they all resolved in short order. My health
has continuously improved ever since, and I have felt absolutely great for
the past nine months.

Obviously, I am very troubled by these results, and am left with many
questions. First off, my doctor made her statement based upon her VISUAL
inspection. We won't have the biopsy results for another two weeks. Can she
really assess the amount of damage visually?

Second, I was diagnosed at age 35. I seem to recall seeing some recent
research that indicated that celiacs diagnosed as adults may not have
complete healing even after several years. So might it be normal that I
would still show significant damage? If someone knows of the research I am
referring to and can send me a link or source, I would appreciate it. I
can't remember where I read it.

Third, when I was originally diagnosed, it was based on blood tests and
response to diet. There was no endoscopy or biopsy (I had a different doctor
back then). So my new doc has no results to compare my current endoscopy to.
Could it be that I was really bad before and have actually improved
somewhat?

Fourth, could I have refractory sprue? Could I have gone without diagnosis
for so long that my intestines will never heal? My understanding of
refractory sprue is that it means your SYMPTOMS continue even on a gf diet,
whereas mine have all resolved. But perhaps I'm wrong about the definition.

Of course there is always the possibility that there is still gluten in my
diet. I doubt it, because I have not been sick. I am also a well-educated
person, I understand about "hidden" sources of gluten, I follow this forum
and others carefully to stay abreast of the latest information. I am also an
experienced cook and know how things are made, plus I make the vast majority
of my food from scratch.

If any of you can shed light on this mystery, it would help me out a lot! I
am shocked and trouble by the results of the endoscopy, and by my doctor's
conclusion.

TIA

Melissa

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