<<Disclaimer: Verify this information before applying it to your situation.>>
Thanks to everyone for your responses. They were encouraging and helpful. I
have learned that it can take 2 years or more for blunted villi to heal, so
a follow up biopsy the year after diagnosis might not be the most helpful
thing. I am not certain why that is the practice of the GI doctor I have
seen these two times.
It seems the more reliable test of healing is to get a blood test to see how
those antibodies are doing. I have scheduled an appointment to do just that
tomorrow. I know my doctor did a follow up test of my antibodies a month or
two after I went GF in 2007 and saw improvement so I am optimistic. I also
plan to call my GI doc's office and ask for a comparison of last years test
(nov 07) with this most recent one to see if any healing is demonstrated.
Blessings,
cris
More details on the responses I received:
"My doctor at diagnosis was a celiac researcher.
At the time of the second biopsies he told me there was improvement but also
after so many years of undiagnosed celiac that adults don't go back to
complete healing.
I have read that young children can be completely healed after as little as
a week of strict GF diet."
The doctor can compare the first and second biopsy and see what kind of
healing has occurred.
" I just looked through the University of Chicago celiac info (on line) and
they say a "mature adult" may take up to 2 years to completely heal. Here is
their web site in case you've not been to it. www.celiacdisease.net
<http://www.celiacdisease.net/> I think they are one of the better on line
resources.
"I'm not a medical person, but I think based on my own experience, that the
pathologist should be able to tell your gastroenterologist how much
improvement has occurred in the two years since your initial diagnosis."
" The biopsy is to check the effectiveness of the gluten-free diet, whether
you are really strictly gluten-free (or consuming something that has a tiny
bit of gluten and don't know it), and whether there are any complications
(like forms of CD that don't resolve easily....I think it is called
refractory CD).
The samples from both biopsies should go to a pathologist who knows
malabsorption disorders, including Celiac Disease, and autoimmune disorders.
The pathologist should compare them, at least, in my opinion. I doubt if the
doctor checks these himself/herself under a microscope. Best to ask your
doctor about this. They may have gone to such a specialist."
" It took me 5 years before I had a normal scope. My lab work looked normal
way before that."
" Even though your symptoms may greatly improve, it could take up to two
years for the villi to totally heal. I have a colonoscopy and
endoscopy every 3 years. After 12 years I still showed some signs of
damaged villi. But when I was diagnosed there was not the information
that is available now - such as gluten in medications, cross
contamination from fryers, support group help, etc. There is so much
more information and help now. Keep on the diet as close to 100% as
possible, and keep informed of the latest information. You will do
fine. You might ask about having your blood levels tested for Vitamin
D, calcium, etc, to make sure you are absorbing properly. You might
need to take some supplements."
" The rule of thumb that someone passed on to me is that for every decade of
your life, it will take a year of healing. So if you are 30 when diagnosed,
you could figure that it will take 3 years for your intestines to fully
heal... SO definitely have them compare your original slides to your most
recent slides. That will show the improvement."
Also suggestions of what else to try:
--going dairy free
--taking additional supplements
--checking all medications, lipstick, etc
--removing all GF grains because of possible cross contamination
etc
*Support summarization of posts, reply to the SENDER not the Celiac List*
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