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:                                                       :
: Excerpts from the West Michigan Celiac Support Group  :
: ----------------------------------------------------  :
: newsletter: Nov./Dec. 1998     Mitzi Berkhout, editor :
:                                    753 Parkway Dr. NE :
:                               Grand Rapids, MI  49505 :
:.......................................................:

The Story of a Family
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by Mitzi Berkhout

Seven years ago, when I finally was diagnosed with celiac disease
(CD), I had no idea what this disease was, or how it would change my
life forever.  I didn't know that it was genetic or that I had a
distant relative that had the same condition.  I read everything that
I could on the subject, but in this area I couldn't find too much
information for the layperson on CD.  So, how do I know that my
great-grandmother had this disease?  It was a twist of fate that led
me to this discovery!

While searching in libraries, I read a book from England on CD and in
this book it said that, in the old days, CD was called the "wasting
disease".  A light went off in my head!!  My grandmother had told me
that her mother had died from the wasting disease.  Her name was Mary
Adams and in 1872, when she was only 32 years old, she died of wasting
disease, leaving behind her husband Will and their three children, one
of whom was my grandmother.  Five years later Will died of
tuberculosis, leaving the children orphans.  My grandmother and her
brother and sister grew up in an orphanage in Pennsylvania.

I often think of Mary, whose celiac disease I carry.  She was young
and didn't know exactly what was wrong with her, but she knew she was
very ill, barely able to take care of her family.  In letters to his
children, written after Mary died, Will relates how sick Mary was,
even long before my grandmother was born.  At that time they didn't
know what caused her disease, much less how to treat it.  Will said
that some of her relatives had the disease too.  We know that CD is
genetic, but in those days they didn't know too much about genetics.
However, Will's account of Mary's illness fits the disease we call
celiac disease.

My grandmother had stomach trouble all her life.  When she was a young
woman, she had surgery to have part of her intestines removed.  When I
was a young girl, I remember my grandmother always being on this diet
or that; everything bothered her stomach.  She was a little woman and
always very thin.  When she died, she had cancer in her intestines
(lymphoma).

Now that I am a celiac and I know more about the disease, I would say
that my mother was a celiac.  She had a bloated stomach, sometimes
heavy, sometimes slim.  She had signs of CD but was never diagnosed.
She was also an insulin-dependent diabetic.  She died of consgestive
heart failure, unrelated to CD.

In my family, I have two brothers that have insulin-dependent
diabetes.  I have a daughter that got diabetes at age six.  I have
several cousins on the same blood line that have diabetes.  I also
have a cousin who has CD.  So far, my children and grandchildren do
not have CD, but I'm watching them very closely and I've encouraged
them to be tested.

I hope in the future that something will be discovered, so that
generations of yet unborn people will be free of this disease.