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Dear Listpeoples,

Thank you very much for your extremely helpful responses to my questions
about:

1. Blood tests - what are people's experiences of their accuracy in
diagnosis?
2. Sensitivity to gluten - is it like classical allergy or different?
3. Sigmoidoscopy - is it any use in diagnosing coeliac disease?

I apologise for taking so long to do this summary and I am sorry if I
haven't had chance to reply to you personally - recent stresses, workload,
and so on have imposed pressures recently.  I greatly value your efforts to
help and advise and hope you won't give up doing so!

So, a big THANK YOU!

Now to get on with the summary:

1.  You have to eat gluten for at least a month before the biopsy for it to
tell you about your real situation.

Amazing to me is the frequent assertion by people on the list that many
gastroenterologists (and labs) throughout the world are not too familiar
with CD and do not take enough biopsies or manage to misinterpret slides.
These people are consultants, after all, are they really so ignorant?  What
on earth are they teaching people in med schools these days?  Anyway, the
recommendation is that, if you have a choice (and people in the UK generally
don't unless they go private), you choose a gastro and pathologist who is
very experienced with coeliac disease.

It is definitely possible to have negative blood test results and still have
coeliac disease.  Several people testified that this had happened to
themselves or members of their families, though it is not clear whether all
were officially diagnosed as coeliac or who had decided through their own
experiences that this was the problem.  Some *had* been officially
diagnosed, though.  One person repeatedly failed several blood tests and
later tested positive by biopsy!  There is more likelihood of a negative
test result, it seems, if you have been gluten free for a time, so that
needs to be taken into consideration. Blood IgA deficiency can apparently
give a negative result. [I've come across this before, but perhaps someone
could clarify why anyone would have blood IgA deficiency?  Is this another
form of illness in itself?]  My question about negative blood test results
has been asked before, I was gently informed, and is in the archives
(sorry).

A condition called 'non-coeliac gluten sensitivity' was mentioned as being a
possible reason why someone might have a negative blood test, negative
biopsy and yet still improve on a gluten free diet.  I must confess to being
confused about this whole area.  It seems as if the diagnosis of coeliac
disease means that villi are affected in the intestine and that any other
illness caused by gluten that does not have this effect is therefore not
coeliac disease.  From what people have said, though, gluten seems to make
some people without coeliac disease very, very ill.  A number of people have
said that they 'felt like they were dying'.  This illustrates the severity
of gluten related illnesses.

2. There is a difference between classical allergy to wheat and coeliac
disease.  [Here is where it all got a bit technical and therefore confusing
for me.]  Someone else may care to comment/clarify this bit: Coeliac disease
is an IgA/IgG mediated response, whereas a classical allergy is an IgE
mediated reponse.  I also heard that coeliac disease is a genetic,
auto-immune disease.  Anaphylaxis is not a feature of coeliac disease, but
could be with a classical allergy.  (Where gluten *intolerance* fits into
this is anybody's guess!)

Several listpeople mentioned a book called Dangerous Grains, ,by Dr James
Braly and Coggan, which apparently addresses these issues.  I looked it up,
but didn't buy it as it cost around 12.99 pounds in the UK, but it has been
highly recommended by several list people and may clarify things when I can
run to it!

I was also advised to look at other food allergies as possible causes of
unresolved symptoms; again the Braly/Hoggan book (above) was recommended as
a source of information on allergies and testing.

There are many reasons why someone on a gluten free diet might still have
residual symptoms: responses suggest it can take up to six months or a year
for people to feel completely well and for some, sadly, never.  Another
reason given for continuing symptoms was bacterial overgrowth/Candida.  This
cause appears so much on other health-related sites as a reason for all
kinds of ill health, that I am becoming very sceptical of this.  However,
some may find it *is* their problem and their life changes as a result of
treatment for it - who am I to judge?

Another reason for residual symptoms whilst on a gf diet could be the
increased gut permeability resulting from eating gluten originally.  This
can cause toxins to enter the bloodstream and result in allergies.  It seems
the intestine is in a process of 'healing' and the time this takes seems to
vary from person to person.  Small amounts of gluten can cause flare ups
which then take time to subside, hence sometimes persistent illness.

Vitamin deficiencies were also suggested as something to bear in mind where
malabsorbtion could be involved.  I don't know if my problem is
malabsorption, but if I were deficient in Vitamins then it would *have* to
be, simply because I've downed more Vitamins in the past years than most
people do over a lifetime (not overdosing, of course!).

Regarding sensitivity to gluten, several people reported feeling very ill
after ingesting even small amounts of gluten.  Symptom duration seems to be
from 12 hours-4 days after exposure.  It is impossible for me to tell how
general this reaction is from the responses I got, but it is obviously
significant for some.

3. Sigmoidoscopy was no use whatsoever in diagnosing coeliac disease as
coeliac disease manifests itself in the upper small intestine, which is too
far for sigmoidoscopy to reach.  (I thought as much!  Drat!   Been through
it for nothing!)  Endoscopy down through the throat (the other end) is what
is needed, though a tiny minority of cases had been diagnosed via.
Colonoscopy.
Quote "The endoscopy looks at your esophagus, your stomach, and your
duodenum (which is the first part of your SMALL intestine.)  Some (rare)Dr's
even go into the 1st part of the jejunum (2nd portion of the small
intestine, which is where "gluten" is broken down - and where CD damage
usually occurs.)  Most (really almost all) Dr's consider biopsies from the
furthest portion of the duodenum to be acceptable for CD.  It is important
that a number of biopsies be taken [6 and even 20 biopsies were mentioned],
because CD can be "patchy", and therefore missed.  It is also important to
have an experienced lab read the pathology slides  (many are misread.)"  In
fact, one person mentioned that a Sigmoidoscopy had failed to detect cancer
of the colon and a friend had died!  The person said they "would never have
a Sigmoidoscopy as they are a total waste of time".  (I must admit, I
thought this might be the case, too!) One commented that "most GI's don't
consider it appropriate to diagnose other gross diseases of the large
intestine either", which leads me to wonder why it was suggested (twice) for
me!  Why do I get the impression I wasn't being taken seriously?
So, sigmoidosocpies appear to have a use in diagnosing/examining
haemmorhoids(spelling?) and other disorders that can occur THAT LOW DOWN,
but from a personal point of view my experiences with the gastroenterologist
have been a waste of time (which is what I suspected anyway).  I hope others
can learn from this and don't go that route, if it seems inapproriate.  I
suppose, to give my doc. credit, he was also checking me out for Crohn's
disease as my mother has suffered from it and it seemed a possible cause of
my symptoms.  I had also failed the blood tests.

I hope others find the summary helpful.  I certainly found your responses
very helpful and illuminating.  I am grateful for you all taking the time to
reply.

I am being referred back to the gastro again (yuk).  That's also another 6
months of my life of waiting!

Who'd be ill!
Julie

* Please remember some posters may be WHEAT-FREE, but not GLUTEN-FREE *