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On 15 Jul 00, at 11:39, Tony wrote:

> 35 people replied.  Of these, 11 stated that they were also not well
> yet. Their replies gave me great encouragement:
>
> 1. 2 years (GF) to start improving and still having reactions.
>
> 2. Still not perfect - some good days, some bad
>
> 3. Still symptoms after 7 months in spite of normal repeat biopsy 4.
> Several years for me to improve. 5. 4 years gf and still problems but
> improving 6. 2 years and still improving 7. Still not better 'I know
> all too well what you mean!' 8. 'Thank God I'm not the only one!' 9.
> 11 months and still not better 10. 2 years and still not improving in
> spite of normal biopsy 11. 2 years to start improvment, and not
> complete at 3.

Hello All,

Apologies for the length of this, but there's something that's
intrigued me for a long time, and I wonder if this rings bells with
others. From the replies to Tony's email, it's clear that a lot of
people take a long time to lose the symptoms of CD and DH once
they've given up gluten. My own experience, and that of the man
who advised me to get checked for CD in the first place, has been
quite different.

He was diagnosed in his late sixties, and was so ill with something
he had no clue what it was, that friends thought he was dying. He
had become thin, depressed, and was permanently tired.  His wife
eventually persuaded him to see a doctor who, very fortunately, was
well-up on CD. He persuaded him to have a biopsy, and the result
was positive. He went on a GF diet, and within two or three months
he was putting on weight again, and had regained his energy. His
symptoms completely disappeared. And the last time I saw him
three months ago, his problem was that he was overweight!

My own experience was very much the same. On being diagnosed
with DH, and on giving up gluten, my symptoms - the intensely itchy,
blistery spots, the general 'unwellness', the weariness disappeared
within three or four weeks, and have never returned. Only if I make a
mistake will there be any sign of the old problem.

In the light of this, I've often wondered why it is that some get rid of
the symptoms quickly, and in others they linger on and on. OK,
we're all different, and maybe that's the answer. But there's
something else I feel could have bearing with some people.

Before I was diagnosed with DH, I suffered from hypoglycaemia,
and was on a hypoglycaemia mailing list for a long time. From what
I learned there, it's clear that many people suffer from both
conditions, and that many of the symptoms are similar - the brain
fog, the desperate weariness, depression etc. One result of my
hypoglycaemia was that I gave up all - and I mean *all* - processed
sugars. Within maybe a year, the condition simply faded away.
Then - as I've said - I went GF. So by this time I was on a GF diet,
and ingesting no processed sugars. And the point of this long
ramble is that I  wonder sometimes if those whose apparent CD
symptoms persist for such a long time after going GF have actually
got rid of their GF symptoms, but are still experiencing the
symptoms of hypoglycaemia. If so, then to get rid of them as well,
they need to remove processed sugars from their diet. Which
particularly in the US - is no mean feat! Don't anybody get me
wrong - I'm not attempting to underplay anybody's CD or its
symptoms. All I'm saying is that for those whose symptoms are very
persistent, and who are on a strict GF diet,  perhaps there's
something else involved.

I'd be very interested in others' views. If enough respond I'll
summarize.

Jeff in London, UK