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Having decided to help Joan and her daughter with her research paper on
misdiagnosis of celiac disease, I sat down and for the first time in 4 years
wrote my history and success on the diet.

Reading it through, I wonder if perhaps I share it with the list it might
help some others who may still be struggling with misdiagnosis, similar
symptoms, or simply just give hope to those that despair with the problems
we face.

So here follows my responses and history of my long misdiagnosis, which I
have since learned are very common among the adult diagnosed celiacs.

Yes, I would love to help with your daughters research paper - I think that
you may find that for those who do not develop celiac as a child that yes it
is a long arduous road to diagnosis.

My sister has celiac and so do I.  However, she was born with it, and became
very ill - failing to thrive etc.  She was diagnosed as a baby and has been
on and off her celiac diet all her life.  I am an maturity onset celiac, and
my diagnosis took years and years of misdiagnosis despite having a clear
family history of celiac, and being a qualified medical biochemist and
working for years in hospitals!

1.  How long did it take for a clear diagnosis after the symptoms started?

I started symptoms of celiac around the time I was 18 and was misdiagnosed
with all sorts of other things until I was 42 and finally found an excellent
gastroenterologist who insisted that we find a diagnosis for me no matter
what it took.

2.  Were you ever given a misdiagnosis?

Yes many, many  times!!!

I was diagnosed with lactose intolerance around the age of 19, after much
sickness and diarrhoea.

Then over the years, I was diagnosed with irritable bowel syndrome, possible
colitis, spastic colon, appendix trouble which even went to surgery and yet
nothing was really found wrong with my appendix other than inflammation.  I
was also diagnosed with on and off stomach problems - and was treated for
ulcers, inflammation of the lining of the stomach and small intestine.  I
also developed joint problems around the age of 30 and was treated for
arthritis with many drugs.  I developed alopecia areata around the age of 35
and was treated for that for many years as it went through its cyclic
stages.  (I now know these are all related to non treatment of celiac
disease)

Finally my General Practitioner - I am British and was living in the United
Kingdom at the time (where celiac is very common by the way!) put me down as
being neurotic and hypochondriac.  And told me it was all in my head, and
that I simply had depression and nothing was wrong with me.  That diagnosis
did me the most harm as it not only damaged my body, my self esteem trying
to struggle with the cycles of diarrhea and constipation and permanently
feeling ill, but also my husband (treated me badly because the illness would
interfere with a normal life.

My aunt, who is an excellent dermatologist specialist, suspected I had
gluten intolerance owing to the alopecia areata - which at that time was not
fully understood as being a side effect of undiagnosed celiac.  As its an
autoimmune disease, my body was slowly trying to destroy itself - hence the
hair loss, joint inflammation, and severe intestinal inflammation.  She even
wrote a paper about me and the diagnosis to try and spread the word to other
dermatologists.  She diagnosed me about the same time I finally found the
excellent gastroenterologist!!

When I was finally diagnosed, I was living in Hong Kong and looked like some
one who had come out of concentration camp.....bone thin, weighed 105
pounds, tired, pale and exhausted with permanent diarrhea.  The
gastroenterologist who I finally found, took one look at me and said you are
going into hospital and we won't let you out until we figure out what is
wrong.  Very luckily for me, he did endoscopy and colonoscopy all at the
same time - and from the biopsy found damage to the villi - plus massive
inflammatory damage throughout my whole digestive system.  But more
importantly - he found a first stage cancerous polyp in the bowel.  This is
a silent cancer and rarely caught in the very early stages, has a very high
percentage of death involved.  He removed the polyp and so far I am clear of
anymore polyps and doing well.  If it was not for the combination of the
colonoscopy and that this gastroenterologist was excellent - I would most
likely be dead by now.

I am now 46 - happily remarried, living a whole new life in the USA and have
stuck as rigidly as possible to my celiac diet and am healthy, clear of any
joint problems, alopecia problems etc!  I look great and feel wonderful most
of the time.  I still however, get some stomach inflammation - probably
because the damage was too intense and the healing has been very slow for
everything inside of me.  When I do ingest gluten, even a tiny amount, I get
very sick.

I now react much more severely than ever before to gluten perhaps because I
avoid it as strictly as possible.

Accidental ingestion now gives me burning redness around the lips and mouth,
skin problems, stomach pain, diarrhea, brain fatigue and severe exhaustion.
I still get days when I long to eat so called "normal" food - and days of
depression when the restrictions of the celiac diet are just too much for me
as I watch my husband and friends eating so many things I cannot eat.  But
those days are few and far between.  I actually eat much healthier now, and
so does my family, I live a normal life and we spend a lot of time out on
the road traveling, riding our Harleys, and eating out is a normal part of
that life now.  My new husband has been extremely understanding and its
never a problem to find somewhere "safe" to eat - he probably knows the list
of safe food better than I do!  Plus if I am sick - he deals with it much
better than I do - buying tons of Gatorade to keep me hydrated, always
finding bathrooms if its urgent, and is the first to whisk me off to the
doctors if I am really bad.

I think my husband has almost re-educated the MacDonald's around our area as
he insists on doing special orders for me as though its perfectly normal -
and even going thru the drive-in - he manages to get me hamburgers without
the buns so we can both eat quickly when we are on the road or riding!
(Even to the point of agreeing with one serving lady who said the order must
be for his dog!!!!)

3.   Are my current doctors knowledgeable about the disease?

Yes, I currently reside in California and we use Keiser Permanente for our
Healthcare and I have had no problems with every doctor I deal with knowing
enough about celiac disease.  Plus if they do not quite seem to know - they
are happy to listen to some of the information I have gleaned from the past
4 years of learning as much about it as I can and trying to keep up to date
with this list and the latest research.

They treat me for whatever happens to me, and regularly run blood tests to
check I am okay - irregardless of the fact that much of it is due to the
celiac or accidental ingestion of gluten.  Plus I am scheduled for regular
colonoscopies to check for future cancer growth.

Chris