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An open letter to the professionals on this forum [composed off-line so I had
 some time to think}.

I've read the impassioned pleas by Dr. Horvath, Dr. Fassano, and others about
the "dangers" of self-diagnosis. I'm also angry. Angry that so many
doctors miss CD, and treat patients for other things. As bad as it is for
the men, it's worse for women. I would hazard a guess that 20-50% of
the women being treated for "irritable bowel" and psychiatric symptoms
in the US are really (atypical) celiacs. Ditto with the CFS patients who
aren't getting any better. Listen to the women in this group with celiac
kids who are told "it's a children's disease" or "you're not Irish, therefore
you can't have CD". Given the risks to the patient (a 15% lifetime
cancer risk with untreated CD, among other things), I understand the
number of self-diagnoses. As I look at the statistics from a large group
of biopsy-proven celiacs, I can see that only the most persistent get
the diagnosis. Why? Well, 75% of these people saw two or more doctors,
and only 10% were given an initial diagnosis of CD. A full *25%* were
initially told that their problems were "all in their head" (psychiatric
or "lifestyle" diagnoses)! Is it any wonder that they are frustrated?
Even worse, 75% of all celiacs, *once they get their diagnosis* are given
*no* instruction on the gluten-free diet. For someone with college
chemistry through biochemistry and several years studying chemical
engineering, this was not a big problem - I figured out what I needed to
do pretty quickly. What about the people on this list (and we've all seen
them) that can't tell hydrogenated from hydrolyzed? (For the uninitiated,
hydrogenated means that extra hydrogen is added to the molecule, while
hydrolyzed means that the molecule is split apart in a reaction
involving water. In the chemistry of food, oils are the usual things that
are hydrogenated, while proteins are hydrolyzed.)

Until all of you esteemed researchers teach your professional
colleagues, and by this, I mean *all* primary care providers in the
affected geographic zones, that CD is *not* limited to "underweight
children of Irish or Dutch extraction" - there will be those of us who
continue to self-diagnose. Many of us suffer from botched diagnoses -
hell, my own, otherwise sharp internist told me that I had food allergies
and put me on an elimination diet. What caused the troublesome symptoms?
Seems I'm "allergic" to wheat, kamut, spelt, rye, triticale, barley, and
to a lesser extent, oats ;-) As long as I avoid these grains, I'm fine,
and all my (seemingly unrelated) physical problems vanish (acute
rheumatoid arthritis, extreme intractable anemia, fatigue, migraines,
rashes, itching, diarrhea, edema, etc.)

Am I a celiac? I'm not going off the diet long enough for a biopsy (as
little as 1 tablespoon of regular soy sauce in a dish meant for six will
put me out of commission for several days!)

Am I staying on the diet? You betcha! In fact, I've walked "newbies"
through the perils and pitfalls of the diet, and contribute a regular
column of adapted recipes to the CDF newsletter.

Gluten free in Los Angeles

Karen

[log in to unmask]   (if urgent, use [log in to unmask] - the better half)
Karen Davis of Davis and Associates (818)892-8555
           "Pain is Mother Nature's way of telling us to slow down;
                       Death is her way of INSISTING!"