<<Disclaimer: Verify this information before applying it to your situation.>>

In my original post I asked:

“Do I have my facts Wrong? I just came back from the gastroenterologist who
stated that I definitely do not have celiac disease.  He based this on
negative biopsies.  I have been on a GF diet for 11 years.  During the
endoscopy he found “There was a paucity of duodenal folds with ridging seen
suggestive of celiac disease” but the three samples of villi taken were
negative for celiac.  Therefore he stated that I do not have CD.

My question to the group was:  When one has followed a gluten free diet for
11 years, would the villi still be inflamed, as the gastroenterologist
stated, or would they be healed?

I received over 100 replies to my post and almost everyone stated that the
villi would be healed.
Additionally, others suggested that I should send my results to a special
lab/pathologist to recheck the findings.

My doctor had quoted Dr. Peter Green.  At others’ suggestions I also wrote a
letter to Dr. Peter Green to see what he had to say.  Dr. Green was kind
enough to respond. I asked if I could quote him and he said yes.  Here is
what he told me.

That we were both correct, but that I was more correct. The villi do heal
with a gluten free diet.  There are those who do continue to have
inflammation, but that one cannot state that a person, eating a gluten free
diet, does not have celiac disease because of a negative biopsy.

 I hope that I have quoted him correctly.

Dr. Green also gave me sites where I could look up studies. The following
PubMed abstracts are those Dr. Green suggested that I review.

This first is found under Mulder Celiac

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui
ds=12219789&dopt=Abstract
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_u
ids=12219789&dopt=Abstract>

The next is found under Lee Celiac

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_ui
ds=12556782&dopt=Abstract
<http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_u
ids=12556782&dopt=Abstract>


In responses received from list members, many stated that that people who
are told that they have celiac disease and get inadequate information from
their doctors may still be getting gluten in their diet due to improper
education on hidden gluten sources, cross contamination or from eating out.
Others suggested that some studies were done in Europe where wheat starch is
eaten.  These things may contribute to many who think they are gluten free
but are receiving small traces of gluten that keeps the villi from healing
completely. I know if it were not for this group I would have had no clue
that so many things had hidden gluten. Thank goodness for this group!

I received one answer from a fellow celiac that seems to sum up my situation
and it says:

Just as a FYI, I am a diagnosed Celiac.  Two years after my diagnosis, my
GI doctor did another endoscopy to check how my "insides" were
doing.  There were duodenal folds with ridging.  He said that is a sure
sign of damage done by gluten!!  There no longer were flatten villi, but I
had been adhering to a GF diet.  Some he saw was "permanent"
damage.  So.....thought you might consider this interesting since it sounds
just like what your dr saw!!

Thank you all for your responses and support.  I guess we can all get
comfort from realizing that if we really follow the diet carefully we can
heal.  Blessings and good health, Carol

* Send administrative questions to [log in to unmask] *