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

Hi Everybody,

The response was overwhelming to my relative/family with symptoms question.
I felt frustrated but now I feel consoled with all the kind and encouraging
replies that were sent.

Apparently there are a lot of relatives out there with symptoms who like
bread and don't wish to change anything.

Some advice for frustration:

Serenity Prayer helps.

What can you do (besides being frustrated in private)?  Not a whole lot.
It is incredibly frustrating when certain avenues seem so logical, at
least for more investigation, but are ignored.  Your family members are
responsible for their own health, just as we are responsible for ours,
fortunately or unfortunately.  .

I do think that for some people it is also a generational thing --
doctors know best, don't take responsibility for your own health, don't
be your own health advocate, medicate everything, etc.  Some folks have a
harder time seeing the diet-overall health connection.

The source of your frustration is the source of that famous saying, "You
can lead a horse to water but you can't make him drink."  I try to get my
relatives with symptoms to come for a visit as a house guest and then feed
them only gluten-free food for a week and see how they feel.  It's not easy
to accomplish.  One can also resort to ruses about how the doctor - your
doctor - is interested in knowing how your relatives feel if they eat a
gluten-free diet.  Not easy to accomplish.  I have handed out many pages of
printed information from this list to a number of relatives, but with very
little positive response.  I did take my sister to a celiac conference in
Baltimore and after a day of hearing the doctors talk about the disease she
at least decided it was not all in my head...

Do nothing.  Everyone has the right to suffer as much as they wish.
You cannot change anyone, only yourself.

I just try one e-mail at a time to remind people that the antibody testing is
only 50% accurate and that it takes a REALLY skilled doctor and pathologist
to come up with a tricky CD diagnosis.  I am continually amazed at the extent
and degree of complexity of this illness; I now consider myself extremely
LUCKY to have gotten a positive antibody result the first time around!  I
have learned to be grateful after comparing notes.

There are experts in the country that could address these issues:

Dr. Joseph Murray/ University of Iowa
Dr. Martin Kagnoff/University of California at San Diego
Dr. Alessio Fasano/University of Maryland - Baltimore

How to cope with the frustration.  There is nothing we can do if they
don't want to know. (I suspect my brother doesn't want to know he can't
drink beer) I just listen to what they say and tell them constantly "Thats
exactly what happened to me, but after I went on the GF diet ..........."
I've also learnt to "humor them" in the same way they did to me.  I
respond to their silly comments with looks of amazement and disbelief and
occasionally amusement.

I have explained to her (my mom) that family members of diagnosed celiacs
should be tested every 3 years or so, or immediately if there are
suggestive symptoms, but between her resistance and that of her doctors,
it doesn't go anywhere.  I try to console myself that I do what I can do,
and it is her life, and I am powerless to force anything.

I just remind myself that all I can do is offer a possible solution.  I
can't control anyone else's destiny.  It's tough, but remind yourself,
you did what you could.  The rest is up to them.

For Your Information I am passing along some information The University
of Maryland in Baltimore is beginning a major research study specifically
of 1st degree relatives of Celiacs (children, siblings, grandchildren).
They will do the blood testing free of charge (usually $125).  You can
have the blood samples mailed by your doctor to the Univ.  of Maryland.

They told me they strongly urge all 1st degree relatives to be tested.
Here is the contact name and tel. no. if you wish to get more information
about this project and how your family can participate.

        Ms. Athba Hammed        (410) 706-1997
She is working on this particular research study, is very knowledgeable
about Celiac and was very helpful in answering questions.

I think you go find a spot several miles from civilization and let out a
blood-curdling scream!  It's either that or whine and complain to someone
else until they tune you out, too.

Simple, if they are not willing to take your advice, just let them be.
Eventually, if the symptoms get bad enough, they'll get desperate
and listen to you then.

I guess our message is falling on stoney ground, but
unlike us they now have a source to turn to when they are ready to listen.
Just be glad you know what to do about the problem, and don't worry about
the relatives who can't face life without their slice of bread.

You learn to offer the info and then if rejected walk away.  I was
so sick before diagnosis, I was thrilled to find out I would get
better if I just followed our diet.

I could write a book about the frustrations but now I just talk a
lot to God and leave it in his hands.  He knows I will help them
when they are ready in the meantime, it is very frustrating.

All you can do is inform them of what you know and it's up to them if they're
an adult. If they are  a minor child then you have the right to have them
tested but of course you can't force them to go on the diet.  But at least
they will be diagnosed.  I realize which people I talk to are sensitive about
it so I have backed off and am hoping through time they will change their
minds.

What I've learned from all this, is first to accept that lots of
people make bad decisions, but they're adults, and this is their right.  I
do try to persuade quietly, without upsetting my mother--because there's
no point in getting someone upset if it's not going to do any good (not to
mention being counter-productive in this case--try to push and she just
gets even more stubborn).

I have the same situation with a relative. What I have done with
the frustration is to realize that I have done my part by giving her the
information, and that the rest is entirely up to her. I have no control
over the decisions she makes, so I just remember that she is a separate
person with her own reasons for taking care of herself or not taking care
of herself.

If you find the secret please let me know.

Thank you again for all the wonderful advice.

All the best,
Susan