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Thank you to the listserve friends that responded! Any piece of advice
helps!!!
PBC is a liver condition-- it caused elevated liver enzymes for my mom.
They did a biopsy and told her it was PBC which is progressive, incurable
but slow to progress. There is a medication called Ursodial, which helps to
slow the disease. The problem is in the bile ducts of the liver.

Here is what I learned from my listserve friends:
1. Rest when needed and if need be say no to things that come up if you do
not feel up to it.
2. One person could no longer eats high fat meat, like red meat, and does
not tolerate beef very well. It takes too much effort to digest it.
3. If there is a problem with sleeping soundly then maybe do a sleep study.
Take the medications they give you after the study and after diagnosis from
the study as it may help you feel much better. It did for the person who
took the study.
4. Liver issues are common with Celiac.
5. PBC (Primary Biliary Cirrhosis) is autoimmune.
6. Autoimmune problems are usually the result of Celiac, even though they
may be diagnosed before the Celiac. The Celiac came first.
7. One person described the fatigue as "to the bone" and that it is very
real. After she was on meds for 6 months and walking as much as she could
her fatigue subsided and has never returned.
8. Stay as active as you can.
9. Do things that make you happy.
10. Join the group PBCers.org as they have a daily chat room and daily
digest. This group has helped others to feel connected and not alone.
11. Faithfully take all medications for the liver.
12. Take B12 for energy

Today I spoke with my mom and she had awesome news. She got the lab results
from her liver doctor and all her enzymes were normal now, her water
retention is gone and she should carry on with all she is doing and she is
doing a great job. She does not have to go back for a year to see him. :)
When she asked him about being tired he said it could just be old age, or
her thyroid (she does have thyroid problems). I think maybe it is still
from the liver too but she was happy regardless.
One thing she had done differently recently was to change her diet to not
just gluten free but grain free. She also gave up all high fructose corn
syrup and eats many organic things. Maybe this resulted in the wonderful
news. I myself found that until I gave up all grains I could not stop my
acid reflux. I always had a sore throat and achey fingers. Now things are
all cleared up. I do not know if this works for others or if giving up
grain helped my mom's liver but it may have. I just told her to keep on the
healthy diet she has been doing and to praise God for answering prayers.

Again thanks to those that wrote helpful things to try. It was very nice to
hear from others who understand!!!

Health and Happiness to all,

Lydia Parlow
Receptionist/Soul Cafe/Food Pantry/Community Garden


*When I see the rainbow in the clouds, I will remember the eternal covenant
between God and every living creature on earth
Genesis 9:16
*

* Please remember some posters may be WHEAT-FREE, but not GLUTEN-FREE *
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