<<Disclaimer: Verify this information before applying it to your situation.>>
I recently contacted Nora Veldman from the Netherlands who had written to the
list about problems with allergy to grains last August and then in March wrote
that she now knew what was wrong and it was not celiac disease. Her symptoms
included some rhinitis which interested me because my reaction to grains do as
well and also she is a crystallographer like me. As you will read below, an
allergic reaction can sometimes be the body's signal that somethings else is
wrong. We need to persist as she did and keep looking for clues.
Martha Teeter, Concord, MA
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From: SMTP%"[log in to unmask]" 3-OCT-1996 07:09:23.14
To: [log in to unmask]
It sure has been some time since I posted to the celiac list. I'll try
to give a "short" resume, which I think is quite interesting...
Feb. 1995 itching started. Before that time I had had sinusitis a few
times in a row. I had been treated with antibiotics everytime and was even
flushed once (that's a small operation).
Anyway, the itching drove me crazy and to my doctor (here we call that
huisarts= homedoctor). My doc did some simple allergy tests on IgA and
housemite. IgA was high, no housemite. A month later the itching drove me
again to my doctor, who forwarded me to the allergist. The allergist did some
24 bloodtests, skintests and what came out: I had an enormous list of
foodallergies, especially cereals. I also had dermographitis, which started me
scratching in the first place. (Dermographitis= you can write on your skin,
tight clothing leaves a tremendous imprint)
In May we went to Spain and I came back with travellers diarrea (?),
it took me three weeks to get my bowels back to normal. I then had some
message from the allergy mailing list telling me if I had dermographitis and
allergy to cereals I should have a look at the CD mailing list.
I collected the FAQ of CD and recognized so much. Depressions,
tiredness, anemia, diarrea itching (with or without hives, you get hives when
you scratch yourself!). Also the fact that there might well be a hereditary
aspect to it, my mum and grandmother had lots of bowel problems and are/were
often ill. Anyway, it felt like finally coming home.
I dicusussed CD with my doctor but he was quite cinical about it. You
are just as "allergic as a door" he said, I can give you antihistamines. My
Allergist in the meantime had concluded that I was allergic to so many things
that he could not do much for me, just try to avoid the worst foods. Months
past and I was always thinking of CD so I finally asked my doctor again and he
forwarded me to the gastroenterologist (GI?). That was October/Novembre, the
itching was increasing all the time, antihistamines helped a little, they
sedated me for one. The GI did an examination on CD but she was also quite
cinical. She thought my heart might be a bit enlarged (through palpation of my
chest) but could not find CD. Also she concluded that my blood deposit was
raised, but that would probably have to do with the time of year, flu present
everywhere. That was 4th of December 1995. From that time on I started to feel
a little lumb just above my left clavicle. I knew that that would probably be
a lymphe gland or a fatlumb. But the lumb grew slowly but surely and I started
loosing weight while, at least in the Netherlands, that is the worst month for
people that are watching there weight. Anyway...
In the beginning of Januari I saw my doctor again and he was extremely
worried (as he should be): I had Hodgkin's disease, that is cancer of the
lymphe glands. All those general symptons just pointed to a weakened immuno
system....might as well have been AIDS!
I am quite lucky to have Hodgkin's Disease (what is lucky) because
nowadays it can be treated with quite a large change of complete cure after
the treatment I'm (still!) having.
Why is my story so interesting? Because I knew that something was
wrong with me but after a sort of diagnosis the doctor was not really prepared
to keep on looking. (I can not really blame him.) You have to be very careful
with general symptoms of being unwell.
How could my disease have been diagnosed earlier? The GI probably
heared something when she was palpating my chest, it did not sound hollow
where it should have, she could maybe have sent me for a chest X-ray. That
would certainly have showed what was wrong. But a 32 year old woman is not
usually send for a chest X-ray. Anyway, that would only have started the
process 2 months earlier (that might make a difference!).
Also what can be learned from this is the tremendous importance of the
house doctor. He's the one that has the general view and should always keep on
the lookout. The specialist doctors have so limited a view! It's like the
ancient story of the elephant and the three blind men: All groping about in
the dark, one thinks he has found a column of a temple, another one a
paintbrush and the third one a hose of a street cleaning car. Neither realises
that he deals with an elephant...
I have no regrets of being tested on CD however, because it did
exclude something I was very worried about. I think if you worry about
something too much you'll have to sort it out. On the other hand you should
especially be careful with getting worried too much, the internet works a bit
like a medical encyclopedia. Once you start reading on all kinds of diseases
you start wondering if you actually have them. The freshmans medical students
effect! They often worry how long they'll last because they think they have
all kinds of obscure diseases.
Anyway, this is my story. I'm at home being one of the lucky ones with
an internet connection). Maybe one of the CD listowners wants my story? I'm
giving my permission here to put it on the list... Any reactions on it I would
gladly like to read or to answer, but since I'm not on the list anymore...
could they be sent to my email address?
Nora Veldman
[log in to unmask]
Amsterdam
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