<<Disclaimer: Verify this information before applying it to your situation.>>
 
Hi listmembers,
 
I am preparing a list of things that are frustrating about trying to lobby
in the US for CD research and funding.  Please let me know if you have any
additions/corrections to this list.  I especially need to hear from those
of you who read up on DH.
 
Here are some of the frustrating things about Celiac Disease as a disease.
 
As causes go, CD has many obstacles, except that it does have a cure
(though many would prefer a pharmaceutical answer rather than a life-long
adherence to a radically gluten-free diet).
 
There has been no epidemiological study of Celiac Disease in the United
States. This means that there are no reliable numbers of the incidence of
Celiac Disease in the US.
 
Without epidemiological figures, there is no groundwork for studying the
incidence of CD among family members of diagnosed Celiacs. As a result, it
is difficult to argue for funding to support the education and screening of
family members.
 
CD is usually diagnosed only after the intestinal villi show damage, often
after 5 or more years of obvious gastrointestinal symptoms.  Many
physicians will not confirm a diagnosis of CD unless the symptoms reach
this severe level.
 
Publishable research is needed on the variety of possible early warning
signs. Celiac case histories include the presence of gliadin antibodies,
irritable bowel symptoms, chronic fatigue syndrome, severe pre-menstrual
symptoms, post viral fatigue syndrome, attention deficit disorder,
environmental illness, chronic respiratory infections, and glucose
intolerance. With documented early warning signs, diagnostic practices
could be amended.
 
With more frequent screening for Celiac Disease, the high probability of
progression to other health crises can be halted.  Current suspects include
lymphomas, rheumatoid arthritis, insulin dependent diabetes mellitus (type
I), Graves' disease, Addison's disease, scleroderma, chronic active
hepatitis, myasthenia gravis, systemic lupus rythematosus, and Sjogren's
syndrome.
 
Currently, CD cannot be reliably diagnosed (in the textbook biopsy fashion)
if the patient suspects CD before enough damage is done, or if the patient
goes on a gluten-free diet to relieve the symptoms before any tests are
done. Once on the diet, a celiac's reaction to (accidental or prescribed)
ingestion of gluten is sometimes more severe than ever before.
 
There is no standardized antibody testing procedure, and there is a problem
with a lack of proficiency in performing and examining small bowel
biopsies.
 
The diagnosis of CD is quite expensive, the antibody tests being at least
$150.00 and a single biopsy costing at least ten times as much, not
including physician's fees.
 
As for the cure, the diagnosed celiac is then faced with a lack of thorough
ingredient labeling.  In the US, there is no regulated labeling of truly
gluten-free foodstuffs.