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COELIAC DISEASE
Tricky to find, hard to treat, impossible to cure
Susanna Lohiniemi
turn into a minor crisis in
he symptoms and signs typical of
my life for a while.
coeliac disease are characteristic of
I started to think
many other diseases too, and
about all the possible
individuals with the disorder, therefore,
consequences of my delaoften remain undiagnosed for a long time. A
yed diagnosis, and about
gluten-free diet, the only treatment of coeliac
the high probability of
disease, has been described as easy to
unknowingly
exposing
prescribe but hard to follow. I concur with
myself to gluten in
both these statements wholeheartedly.
various food products
For over 10 years my coeliac disease went
when eating out. After all,
undiagnosed, even though my doctors were
the doctor had clearly
trying hard to work out what was wrong. In
said that there was a risk
retrospect, they probably should have
of lymphoma if I didn’t
guessed my diagnosis a bit quicker than they
stick to my diet. And my
did, in view of the fact that I’d told them that
dietician went on and on
my mother suffers from dermatitis
about the importance of
herpetiformis, and was being treated with a
maintaining a balanced
gluten-free diet. Anyway, I was diagnosed
and healthy diet. Soon
with coeliac disease in 1993 after many
after I’d been diagnosed
medical examinations. My symptoms were
and
had
had
my
telling: I frequently had flu-like symptoms,
consultation with the
was always exhausted, and often had
dietician, the medical
headaches. I had mild iron deficiency,
professionals, and everyirregular menstruation, slight hair loss, and
one else seemed to lose
mild but persistent gastrointestinal cominterest in me and my
plaints, such as nausea and flatulence, which
disease. I had no medical
were diagnosed as lactose intolerance but A poster and postcard of the Finnish Coeliac
follow-ups
and
was
did not respond to the lactose-free diet. The Society
offered no financial help
tests for antigliadin and antireticulin
with the costs of treatment from the government. I felt
antibodies had been negative, and coeliac disease was
lonely with my disease.
therefore unlikely, so the doctors told me. Furthermore, for
Nowadays, doctors and other authorities seem to have
a patient with coeliac disease to be slightly overweight and
noticed that patients with coeliac disease, who regularly
in good physical condition, wasn’t typical, they said. I
receive information from various associations and from
miscarried twice in 1 year. It happens, they explained.
other patients with the disorder, cope better. In the UK, one
Then, when travelling to Estonia for a few days, I got
of the reasons patients with coeliac disease are encouraged
terrible diarrhoea. The doctors soon ruled out salmonella,
to go to their clinic once a year for a check-up is so that their
giardiasis, yersinia, and other common infections, but the
doctors can find out whether or not the individuals are still
diarrhoea remained. Finally, a young locum doctor at the
members of a coeliac association (figure). In Finland, the
health-care unit of my university, decided to take a look
importance of coeliac associations and regular follow-ups
through my files. He sent me to have a bowel biopsy. My
are spelt out in the national diagnosis and treatment
coeliac disease was obvious.
recommendations for coeliac disease.
After switching to a gluten-free diet, my diarrhoea
Many other things have also changed since I was
disappeared within a couple of days, and after 3 weeks, I felt
diagnosed. Supermarkets, for example, now provide a large
great. I was no longer tired and my headaches disappeared.
variety of gluten-free products, and I can even find
I began enjoying my new gluten-free life style. I even have
something in my corner shop. Products are usually correctly
two lovely children born from uncomplicated pregnancies.
labelled, and in restaurants, gluten-free foods are marked on
Soon after starting the gluten-free diet I realised,
the menu. Help, from the government, with the cost of food
however, that it excluded beer, pasta, and pizza, among
is still lacking, but they say it might be possible to include us
other things, and that it was extremely expensive.
in next year’s budget. Doctors are better informed about
Furthermore, baking was dull and time-consuming, and
coeliac disease too, and there is hope that one day the delays
gluten-free products in the shops were rare. I also had to
in diagnosis will be consigned to history. Finally, I’m willing
explain, every day, what coeliac disease was and what I
to bet that all patients with coeliac disease are encouraged
could and couldn’t eat. Although I’d seen my mother live a
by the dream that one day a pill, vaccine, or preventive
full and completely satisfying life with the disease, and
measure might perhaps be available to save them from a
although my persistent long-term complaints were gone,
life-long restricted diet.
coeliac disease and the concomitant gluten-free diet did
Finnish Coeliac Society
T
Susanna Lohiniemi is 35 years old, and was diagnosed with coeliac disease in 1993. She is Executive Director of the Finnish Coeliac
Society, and is doing part-time research on quality-of-life of patients with coeliac disease with the Coeliac Disease Study Group at
Tampere University.
Kinnarinkatu 4A 1, FIN-33530 Tampere, Finland (S Lohiniemi MA)
[email protected]
The Lancet Supplement | 358 | December | 2001
S14
For personal use. Only reproduce with permission from The Lancet Publishing Group.

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