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Hi all,

The summary continues:

It is very possible that your friend's diet still contains things like milk
or soy sauce or soy products or  - who knows what - that have meant that
the gluten-free diet was not enough when used without other restrictions.
If she is receptive to your help, let her know that an ELISA test might
help find the things she should eliminate from her diet. And tell her about
MSG and postage stamps and envelope glue - all the tiny details that make a
difference.

I had a friend who died of Sjogren's disease two years ago and it is a long
and sad death.  I never could convince my friend that she would be better
off if she would restrict her diet.  I'm afraid most people will only
listen to their doctors, and I really don't know how effective a
gluten-free diet is in treating that disease, although I know it is always
mentioned as being related to celiac.

There are many symptoms like dry eyes and a dry mouth, with brittle bones
and stiff joints, that make the disease very hard to live with.  Be gentle
with your friend, she needs you.
****************************************************************************
Reference your note on Enez's eye problem.  Could you advise what type eye
problem she is having.  I am also having eye problems especially this last
year as my CD became worse.  However on a totally free GF diet I have seen
little difference with my eye problem but feel terrific otherwise.
****************************************************************************
I am not diagnosed with sjogren's, but noticed all the wet surfaces were
not so wet---  increasing the Vitamin A rich foods I eat has helped.  I
still can't wear my contacts very often, but I am more comfortable.  I
don't absorb fats right, and loss of fat soluble vitamins seemed like a
good guess
****************************************************************************
You might tell your friend that it often takes years, not just one month, to
get any definitive results from the GF diet intervention. I have diagnosed CD
and probably Sjogren's (not diagnosed but I have alot of the symptoms) and it
has taken me over 5 years of searching and various treatments for related
conditions to get well. I am not sure that I will ever be l00% well again,
since I had undiagnosed CD and untreated hypothyroidism for 25 years before I
figured out the causative reasons for my poor health. During all those years,
the wreckage to the body can often be irreparable. But one can get well
enough to function and have a normal life again; persistence and
determination saved me!
****************************************************************************
Please forward to your friend that although celiac disease and sjogren's
disease may be correlated, going on the gluten free diet will NOT correct the
dry eyes.  I have the same two conditions and I do follow the diet strictly.

The dry eyes still exist because the "dry eyes" symptom is sjogren's and is
not directly a part of celiac disease.  They are two separate (although
sometimes correlated) diseases. Please do not give her false hope that this
will change.  Placing this expectation on her will only create guilt and
frustration with the diet.
****************************************************************************
If your friend wants to communicate please give her my email.  I suggest she
joins a Sjogren's support group.  She must treat all the symptoms and be
regular and consistent.  As I was not diagnosed until April this year and
was having dreadful teeth problems it was not until I had had three molars
removed due to infections in the roots that we realized it was the "dry
mouth" problem causing the infection.  As well, I had dreadful problems with
my eyes.  I thought I was a hypochondriac seeking a new disease and symptom
for each day.

My nose was drying out of a night and I was breathing through my mouth -
this just increased the dry mouth problem.  I now use a saline spray 10 or
so times a day - whenever I think of it.  As well I lubricate the nostrils
with a small smear of lanolin.
****************************************************************************
I wanted to tell you as an old retired MD with many similar exasperating
experiences, that I think you handled it very well.  You do what you can and
then withdraw from the field and wait until the next time.  It will come.  One
can not inflict health on a person against her will.  From your (the doctor's)
point of view, the "need to cure" can be vexing.  Good luck with your friend-
maybe she will see and maybe she won't.  I think the reason this list is so
faithful is that it is composed of people who have been willing to surrender to
a new concept and who have grown in the process- in other words, you and the
others have grown into superior people not just by curing yourself of a
disorder, but by surrendering the many joys and pleasures you have had to give
up in order to do so.

Thank you again for all the responses. I have learned a lot and I know that
Enez will too!

All the best,
Susan

PS I didn't include Vance's comprehensive celiac summary but I have printed
it out for Enez.

Much appreciated!