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In a message dated 3/5/02 5:21:47 AM, Reesa Zuber <[log in to unmask]> writes:

<< I think it is quite possible that CD shows up in different ways (i.e.
nonclassic, classic) in different individuals, and that thus, it appears
to skip a generation, but in fact may only occassionally do so. Think
about how unlikely a person is to get a diagnosis of CD if they are,
say, both overweight and tend toward constipation! Nonetheless it is now
recognized that about 10% of celiacs get constipation as opposed to
diarrhea when exposed to gluten. Additionally, there are forms of gluten
intolerance that are closely related to but not quite the same as CD,
such as some of the neuropathies described by Hadjivassilou (sp.) where
they find antibodies to gliadin but not antiendomysial antibodies. These
neuropathies cause destruction of nerves, various forms of ataxia, and
other nerve-damage-related diseases. These people, instead of getting
intestinal damage due to the autoimmune reaction, get nerve damage. Its
the same process, but a different area of the body is damaged. This is
nicely pointed out in an article by M. Hadjivassiliou et. al. called,
Gluten Sensitivity: a many headed hydra -- heightened responsiveness to
gluten is not confined to the gut, appearing as an editorial in BMJ
1999;318:1710-1. Furthermore, there are autism and shizophrenia, both of
which have been known for a long time to frequently show dramatic
improvement on a gluten free (and casein free) diet. It would be
interesting to note the frequency and distribution of all the various
gluten induced disorders in families where there is a prevalence. In my
daugher and I there are more signs of nerve-involvement, and in my son
and grandmother, more intestinal and classic CD signs, though in all
there is overlap, as my daughter and I also have some intestinal signs
as well. >>

Hello Reesa, and Everyone,

Thank you for addressing this issue, as it is something that has disturbed me
since I found out about CD less than 2 years ago. I am still trying to figure
out if I, and my sons, actually have CD or not. I was diagnosed with Chronic
Fatigue Syndrome 20 years ago, shortly after my 2nd son was born (possibly
triggered by a bout of mononucleosis). Some 4 years later I was nearly
incapacitated with bipolar disorder. I'd had a history of slight constipation
and struggled with my weight most of my adult life. Another 2 years later I
developed mild Irritable Bowel Syndrome, and intermittent outbreaks of itchy
blisters on my feet, and at the base of my spine.

In the summer of 1998 I abandoned my high carbohydrate nearly vegetarian diet
and embarked on a low carbohydrate diet, in order to try to control my
weight. This, of course, meant I virtually eliminated all grains. I wasn't
fanatic about sticking to it, but gradually I began to realize that my
intestinal and bipolar symptoms were diminishing substantially. The blister
attacks were also far more infrequent. In 2000 I heard about Celiac Disease
and asked my doctor to run the blood tests for it. The results were high pos
itive for IGg (46), but all the other tests were negative. The doctor told me
I did not have CD, since a positive diagnosis would require several of the
tests to be positive. A visit to another doctor a year later convinced me
that I certainly could have it, and I embarked on a fanatically gluten free
diet in the Summer of 2001. In November I saw a Celiac specialist, had the
bloodwork repeated (with the exact same results) and underwent an intestinal
biopsy, which was negative. Did I have CD? His answer was a simple
recommendation- if I improved on a gluten free diet, stay on it!

It has now been nearly 4 years since I first went "mostly" gluten free,
and in the last 3 years I have not had a single bipolar episode, nor
taken any psychiatric medications to control it. (That is after 13 years
of very poorly controlled symptoms despite more than of score of
different medications). The Irritable Bowel symptoms are also completely
gone. The only outbreak of what I now assume was DH I have had in the
last few years, was 5 months ago, after I ate a large amount of shrimp
over a period of several days. (These blisters were never biopsied, and
my doctors just treated them as fungal infections) Since I no longer
have them, there is nothing to biopsy anymore.  Unfortunately, even
though my emotional, intestinal, and DH symptoms have cleared up, I
still have trouble with muscle weakness, and wonder if there has been
permanent damage done.

Son number one- Born in 1979 after a problematic pregnancy, he had severe
emotional problems his entire life. These included autistic-like behaviors,
but he was also very bright, and slipped through the system as "normal". He
developed a small patch of Psoriasis as a young child, and had other strange
skin problems, but nothing that looked like DH. He was always near the bottom
of the charts for size. By age 12 or so, he began complaining of fatigue,
joint and bone pain. Numerous doctors' visits and tests showed up nothing. He
has had great difficulty in college, despite his extremely high intelligence,
and in his early 20's the intestinal symptoms began with intermittent bouts
of severe stomach pain, diarrhea, and sometimes vomiting. He has also been on
several different medications for depression and mild symptoms of bipolar
disorder. I encouraged him to have the blood work and a biopsy done, which he
did, and his results were nearly identical to mine. His IGg was high, the
rest of the blood work negative, and the biopsy negative as well. I suggested
he try a g/f diet, which he did, and found that his symptoms did clear up. A
thorough screening for nutrient deficiencies also came back normal. Is his
short stature a result of CD? (He is 5'5" and 130 pounds) We'll never know,
since at 23 he is too old to grow anymore.

Son number two- Born in 1981, he has also had suspicious symptoms. He had
severe projectile vomiting until he was at least 15 months old, but since he
continued to thrive despite this, no medical tests or treatments were done.
At the age of 2 he developed some Vitiligo (depigmentation of his skin),
another autoimmune disease. This continued to spread, so that by the time he
was 8, it covered most of his body. He began vomiting again with compulsive
eating at around the age of 8 or 10, which got worse for several years. A
pediatric gastroenterologist we took him to never tested him for CD, only for
lactose intolerance, which was negative. Somehow, through extensive
psychotherapy, he managed to get this behavior under control, and now, at the
age of 20, he is doing very well, although he still struggles to control his
eating and his weight. If he has CD, we do not know, as he refuses to get
tested, despite the family history.

The $64,000 question, then, is do we have CD? If not, then what?

"Additionally, there are forms of gluten intolerance that are closely
related to but not quite the same as CD, such as some of the
neuropathies described by Hadjivassilou (sp.) where they find antibodies
to gliadin but not antiendomysial antibodies."

I wonder if this is what is going on with us? I would love to read this
article, if there is some way it could be made available to me, and would
like to have any additional information and feedback from others with similar
histories.

Thank you for your patience, wading through this long story!

Maddy Mason
Hudson Valley, NY