Unchartered Waters

By Nancy Kaiser

In the The National Forum (Winter 2001-2002 issue) Alan Cocchetto
wrote two fascinating and informative articles regarding
breakthroughs on a new marker and a disease which may pertain to
many PWME/Cs (patients with ME/CFIDS).  My article will be in a
more 'up close and personal' mode on those subjects.  I am one of those
who tested for the marker of a high level of chromogranin A and (after
five long weeks at Mayo Clinic last spring) was diagnosed as having the
neurological form of Celiac Disease.

For those who don't know my history--let me do a brief review.  I was
sort of the folklore 'poster girl' for being as sick as you can get and
survive with CFIDS in those early years.  I started with symptoms in the
early 1970s and by 1981 was a total disaster.  I tried everything:
interferon, trigger point injections, nerve blocks, acyclovir, a spinal
cord stimulator for pain, exploratory surgeries, lumbar punctures,
gamma globulin, first PWC on Ampligen , glutathione shots, antibiotic
therapy, every oral herpes medicine that became available, Chiari
surgery and transfer factor.  That is only a partial list--as you name it, I
tried it!  A few of the above therapies helped slightly but none for long.
The book Osler's Web by Hillary Johnson covers a good deal of my
early struggles as well as the saga of many CFIDS pioneers and our
government's inability to deal with this mysterious illness.

After my diagnosis at Mayo Clinic, I still felt a need for confirmation
that I did, indeed, have an atypical form of Celiac Disease. The reason
being that it was a neurologist at Mayo who finally realized what was
wrong, when it should have been a gastroenterologist, but he missed it.
A great deal of credit goes to a brilliant young neurologist who told me
the first time I saw him, "I believe what you are telling me--I like
challenges and I will do everything I can to help you" -- and he did just
that.  However, it seemed appropriate to confirm his diagnosis so off to
Denver we went to see a Celiac Disease specialist.

In this issue you will find two published articles, one by C. Robert Dahl,
who was the specialist in Denver. He is a most impressive,
knowledgeable and compassionate physician.  He confirmed the
neurological Celiac Disease (CD) diagnosis.  However, he refers to this
type as being in "Uncharted Waters."  He also agreed my high level
chromogranin A played a part in his diagnosis.  He explained, to begin
with, most doctors are taught in medical school CD is a rare disease you
will never see and are given about a 15 minute overview.  Now that is for
the "garden variety" type CD.  Neurological CD is just beginning to be
recognized and understood.  Rather than going on in my own words I
suggest you read very carefully Dr. Dahl's compelling article "Celiac
Disease, The Great Mimic" which follows.  The second article was
published in The Lancet and is an alarming statement of the lack of
recognition of CD in the United States.

Most gastroenterologists still are not aware or supportive of the CD
diagnosis.  It can be diagnosed by blood tests (mentioned below) and/or
an endoscopy.  Dr. Dahl explained most doctors only do one or two
biopsies during an endoscopy.  However, CD damage is so patchy in the
small intestines it may take up to 5 biopsies to find the problem area or
it may not show up at all.  A new camera (soon to be available) which is
swallowed will result in a more definitive diagnosis. (See Al Cocchetto's
article in this issue of the Forum regarding the camera.)

Now for the "fun part." The only treatment for Celiac Disease is a
gluten free diet.  Gluten is found in wheat, rye, oats and barley---and
unfortunately many foods contain gluten or gluten is used in their
processing.  Many times it is hidden and the food industry in general
does a terrible job informing the public. The ingredients list you check
on food labels can be very unclear or they "weasel word" to cover up,
using names you would never suspect being connected with gluten.  It
becomes almost a science with a very steep learning curve to outfox the
gluten "monster."   Just cutting down on wheat won't work--it has to be
zero tolerance.  For those who try the gluten free diet I suggest you seek
some professional help from one of the following:

Celiac Sprue Association 402-558-0600 <www.csaceliacs.org>
Celiac Disease Foundation 818-990-2354 <www.celiac.org>
Gluten Intolerance Group 206- 246-6652 <www.gluten.net>

All three organizations have excellent informational packets and the
Celiac Sprue Association has a new edition of their GF Commercial
Products Listing which I refer to daily.  Also members of local CD
support groups are a wonderful resource.

I have been on a gluten free diet for 9 months.  Am I cured?  NO.  Am I
much better?  YES.  Dr. Dahl says it takes about 2 years to really notice
an improvement.  With neurological Celiac Disease no one is quite sure
how much of the damage which as been done to the central nervous
system will be resolved.  All I can tell you is my quality of life has greatly
improved, thus I wanted to share this information with all PWME/Cs.
As we have found out over the years what works for some of us does
nothing for others.  My hope is my experience will make a difference in
some of your lives as with ME/CFIDS/CD we truly are in uncharted
waters and this is one more piece of the puzzle.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606