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Gluten intolerance goes into remission

I've received a fascinating letter from an Australian computer programmer, Graham Chapman, who says that the gluten intolerance he had as a child went into remission. Here's his (unedited) letter:

I was diagnosed with acute coeliac disease around 1951, in Port Hedland, Western Australia. The symptoms appeared in acute form when I was weaned. I would have died but I was extremely lucky that the local GP was Eric Saint, who went on to become a Professor of Medicine at (I think) James Cook University in north Queensland. He was extremely bright and spotted the possibility of coeliac in time. I spent a total of 18 months in Princess Margaret Hospital in Perth, finally leaving at the age of 4, by which time I had suffered rickets, a malnutrition bone disease which left me with a shortened right leg and a partial club foot.

I was pretty lucky to survive given that the correlation between coeliac symptoms and gluten intolerance was not spotted until 1950, and I was born in 1949. Even so, my parents were told to expect that I would die. My parents also suffered a great deal from persecution by a small number of ignorant people in the small towns in which they lived at the time (Onslow and Port Hedland in WA). Kind ladies offered in insulting terms to look after me, because, as they saw it, my Mother wasn't. They didn't believe it was disease, they thought it was neglect. They meant well, they didn't realise their error, or what they were inflicting. My mother to this day is traumatised by that experience. She was brought up on a remote farm, which made her a tough girl - she never cries, but she still gets tears in her eyes from the frustrations of 45 years ago.

My mother cooked me oatmeal biscuits every two days from then until I was 16. If it is of any interest, I notice that oats is often on the banned list for coeliacs, but I can attest that it did not have any adverse effects on me, but of course you need to be wary of adulterated oats.

At age 13 or so I left the gluten-free diet for a long weekend due to social pressures, and lost a stone (6 kg) in weight, so coeliac was still active then. At age 16 I discovered I was in complete remission and went on to a normal diet. Maybe this wasn't sensible, but Im still here at age 47.

In about 1970, I was in WA when I found from relatives that a research project at Sir Charles Gairdiner Hospital in Perth was investigating my extended family for possible immunological correlations between bronchial problems and coeliac disease. This sounds at first glance a strange combination, but my elder sister was diagnosed with mild coeliac disease at that time (and finally got relief from a few years of intestinal upsets). The researchers also discovered that an aunt had coeliac, and had probably had it all her life. After 60 years of being told by doctors that she had "nerves" she finally experienced good health. I think she suffered a great deal more than me, because I got over most of my problems by the age of 4, but she suffered 60 years of being regarded as at best sickly, and at worst a hypochondriac, as well as actually being ill all that time.

So, the researchers investigated me as well because of my coeliac history, giving me a barium meal and a lower bowel biopsy. I had to swallow a capsule attached to a tube and wait until it reached my bowel..... kids, don't try this at home!

The researchers found that my intestines were those of a completely healthy person, so much so that they would not have believed that I had ever had coeliac disease had they not had the evidence of all the medical records, the family testimony, and the deformed foot.

GP's now tell me that I have an increased risk of bowel cancer but this only means the probability is slightly increased, and does not mean that I have any significant real risk (I hope!)

The coeliac literature includes suggestions that damage can occur even after apparent remission, although in my case I would think that the evidence of completely healthy villi indicates a reduced risk in my case. Nevertheless I would be interested to find out if there are any similar cases to mine, and their opinion on the merits of reverting to a gluten-free diet even with apparent remission, in order to avoid damage. For that matter I would be interested to hear from anyone who has expertise in this area. I could of course write to my local Coeliac society, but I much prefer the Internet - so much quicker.

I have read that remissions in childhood coeliac are not uncommon. Note that doctors have repeatedly told me that the fact that I am in remission does not mean that I will stay that way - it could return at any time. So I do not claim that the disease has gone, just gone into remission.

Graham Chapman
email: grahamc AT zeta.org.au
web : http://www.zeta.org.au/~grahamc/

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