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I have been a member of this list for almost 4 years now.  While I read every
message that is posted, I don't post very often.  However, I feel compelled
to reply to this particular posting for a couple of reasons.

One, I am an identical twin.  I have had digestive problems most of my
life.  I, like many others on this list was misdiagnosed for many, many
years.  My diagnosis came from a Dermatology appt. that I had for simple
skin cancer removal on my face.  While I was there I asked him to take a
look at a rash on my back that I had been getting on and off for 16
years.  He performed a DIF biopsy which confirmed that I had DH.  He
told me that my primary doctor should be informed, as it also meant that
I had Celiac Disease.  I had never heard of either at the time, but I
did mention it to my regular doctor.(Gastrointerologist)

He didn't seem concerned, so neither was I, although I continued to
become gravely ill, hospitalized several times, had several surgeries,
including removal of most of my intestines.  After 5 more years of ill
health, and frustrating tests for just about everything you could name,
I began looking into my own records and history, and being on the
internet now, found information regarding DH.  At this point, with the
connection between the two being clear, I went back to my primary doctor
and insisted that he look into the biopsy report from the Dermatologist.

At this time, he diagnosed me with Celiac Disease and told me to stop eating
wheat.  Of course, I continued to be ill.  I went back, and together we
researched the information and realized that I had not removed all forms of
gluten from my diet.  I became strictly gluten-free at this time, and have
remained so.

I must mention that I was also seeing a Chinese Doctor for acupuncture and
herbal remedies for over a year.  While the treatments were quite successful
for treating my stress, they had no effect whatsoever on my digestive
problems.  While I do not discount that someone "felt" better after
Acupuncture, (the mind is a very powerful thing and the Placebo Effect cannot
be ignored.)  My point is that just because a person "feels" better
absolutely, is not "cured".  There are many asymptomatic celiacs that have
damage being done to their small intestine nonetheless.  I am a believer in
alternative medicine, but even my own Chinese Doctor told me that Acupuncture
cannot cure Autoimmune Diseases.  It may help with symptoms, but the
underlying disease is still there, "silently doing it's damage".

As for my twin, eventually she too began having digestive problems.  She had
most of her intestines removed last year from Diverticulitis.  I jumped up
and down until her doctor finally ordered a Celiac Blood Test.  What the
research says is that there is a 70% chance of a second twin having the
disease.  Like many autoimmune and allergy related diseases the genetic
component is there and can be triggered, they believe by trauma of some sort.
(Severe traumatic stress, pregnancy, surgeries, etc.)

It turned out that her test was normal.  She is not currently a
"Celiac".  However, she must be retested periodically to determine if
something does trigger the disease.  My problems began early in life
compared to her.  Here's the difference:  At a very early age I went
through severe trauma in the form of rape,  I lost a baby at 6 1/2
months, I was attacked and almost killed,  I have been through several
major surgeries (I also have Pancreas Divisum ( a congenital birth
defect), and at 38 years old I became a Widow.  She on the other hand,
lived a relatively "trauma-free" life, and didn't have her 3 children
until mine were almost grown.  The point here is that the trigger for
her may be yet to come.  Or maybe she will be lucky and be in that 30%
of identical twins that never experiences a trauma severe enough to set
that trigger is motion.

I too, keep an open mind, and continue to follow the research, and in
doing so, from what I have learned...there is danger....danger....
danger....in believing that just because you have managed to eat gluten
without apparent adverse effects, that you are cured.  For whatever
reason.....you are still a Celiac.  Celiac disease can cause so many
other problems down the line if you mistakenly believe that you are
"cured".  Many celiacs experience no symptoms whatsoever, until they are
diagnosed with intestinal cancer from all of the "silent" damage.

Staying gluten-free until the end of my life.....which should be much
longer if I do, Cat Whyte