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Subject:
From:
Ron Hoggan <[log in to unmask]>
Date:
Mon, 5 May 1997 17:18:21 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

Sharon Marcus  <[log in to unmask]> wrote:

>>I ask this question because of the recent post of Bill Elkus entitled
>>"Horvath on CD and Neurological Manifestations". It seems to me that a
>>celiac following the diet for a time long enough for him to recover
>>intestinal damage, etc. "should" not be suffering from neurological
>>problems, unless there were other factors involved.

Then Bill Elkus wrote:

>I have not looked at that particular set of articles, but I would venture to
>guess that they all refer to patients with untreated Celiac Disease, i.e.
>people still eating gluten containing foods.

I believe it is a dangerous misconception to think that the gluten-free diet
offers a complete recovery from neuropathic symptoms of celiac disease. This
is the basis on which many clinicians rationalize delayed testing for cd. In
fact, a great deal of evidence suggests that those ~10% of celiacs who
suffer from neuropathies have only limited hopes for full recovery. W.T.
Cooke and G.K.T. Holmes in their book, _Coeliac Disease_ 1984, have devoted
an entire chapter to the neurological and psychiatric complications of
celiac disease. On page 209, they state:

"The majority of reported patients have shown a steady and progressive
downhill course, leading to a fatal outcome on account of the neurological
disturbance itself.

Later, on the same page, they say:

"There is no evidence that gluten withdrawal can stay the course of the
disorder and in many patients the complication has made its appearance when
the patient was already on a gluten free diet."

I do not recall reading about this in celiac children, beyond abnormal EEGs
or in cases of cerebral calcifications leading to a treatable epilepsy,
which responds to a gluten-free diet, and little else.

The evidence points to the need for early diagnosis and treatment of celiac
disease, especially in childhood.

While the gluten-free diet, along with other dietary adjustments, seems to
have alleviated my neuropathic symptoms, ie: vision; hearing; positional
vertigo; peripheral numbness; dizziness; etc. I appear to be one of the
lucky ones. The evidence also suggests that one or all of these symptoms may
be back.

My intention is to encourage early diagnosis, and to discourage
"experimentation." I hope this is helpful.

Best Wishes,
Ron
http://www.panix.com/~donwiss/hoggan/

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