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First off, I want to thank the many, many people who replied to my post
about abnormalities showing in an endoscopy after 1 year GF. There were far
too many emails to reply to them all personally, but I appreciated each and
every reply. There would not be room to include every response in this
summary, but I will try to cover all the major points that came up. First
off, I want to clarify that the damage that the doctor saw, visually, was
the scalloping of the duodenal folds. We are still waiting for the biopsy
results.

Here's what I learned:

1. An overwhelming number of people agreed that it was premature for the
doctor to conclude that I was not following the diet. Quite a few said to
get a new doctor. I might. Many people emphasized the fact that since there
was no previous endoscopy (at diagnosis) to compare to, she has no way
knowing if I have improved or not. Others pointed out that while scalloping
is characteristic of celiac disease, it is not in and of itself specific to
celiac disease - it could be caused by something else.

2. Several of you gave me your own experiences with repeated endoscopies,
and said that healing took place slowly, with subsequent biopsies over
several years showing gradual improvement. Some of you still have damage
after many years. A few said they had healed quickly.

3. I had recalled seeing a study about continued damage in adult celiac
patients. Someone sent me the abstract, and I also found it on the Web:
http://www2.gastrojournal.org/scripts/om.dll/serve?article=amge0354&nav=abs
There was also the following on celiac.com:
http://www.celiac.com/cgi-bin/webc.cgi/st_prod.html?p_prodid=736&p_catid=3&s
id=91hH9H0lECeM5rr-18103387219.68

In addition, someone sent me the complete text of an Australian study. If
anyone wants it they can email me and I'll forward it.

4. A few people suggested that other food intolerances could cause similar
damage to the small bowel. I have heard this, especially with regard to
dairy, but I would think that I would show some  symptoms of the
intolerance. I am symptom-free on a gf diet. I am not discounting this
possibility, however. I will look into the matter further.

5.A whole slew of people said that if my symptoms resolved on the gf diet, I
must be doing it right.

6. A few people suggested that perhaps I'm not doing it right - do I check
all medication, lipstick, etc. Yes, I check everything. Not only do I not
consume gluten, I don't put it anywhere on my body. However, I am going back
over everything just to be sure. I am also keeping a food diary and will
meet with a nutritionist or dietician as my doctor has requested (I figure,
how can I expect her to be open to my suggestions if I'm not open to hers).
By the way, I already had a consultation w/ a dietician a year ago when I
was first diagnosed. I had to pay for it out of pocket, and it was a
complete waste of my money, because she did not tell me a single thing that
I hadn't already learned through my on research on the Web, and through the
books I had purchased on the gf diet. And this was a dietician that was
somewhat specialized with celiac patients.

7. Perhaps the best suggestion was that I repeat my blood tests to see if
the antibodies had gone down over the past year. That should indicate that I
am not getting gluten, even though the intestinal damage persists. Great
idea! That makes perfect sense to me. Some people gave details about their
antibody levels that indicated that in some cases, even these tests may take
time to decrease to normal levels.

8. Regarding my question about the possibility of refractory sprue, pretty
much everybody said that if the symptoms are gone, it ain't refractory
sprue. It's just plain old celiac disease taking it's sweet time to heal.


Follow-up: I called my doctor's office yesterday and requested the blood
tests. My doctor would not order the tests, she said that would be a big
waste of time and money. I faxed the two abstracts to the doctor's offices,
and set an appointment for a consultation in a few weeks. I hope that she
will bother to look at the research and will be more open-minded when I see
her. If not, I will find another doctor. I also said that I was willing to
see a dietician, but I wanted one who was VERY experienced w/ celiac
disease. Unfortunately, my current doctor does not actually know of a
dietician to refer me to. Her solution was just for me to get a name from my
insurance company or my primary care physician (my primary care physician is
completely clueless about celiac disease). If anyone knows of a dietician or
nutritionist specializing in gluten-free diets in Charlotte, NC or
surrounding areas, please let me know.

Thanks again to everyone for your suggestions and support.

Melissa

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