Coeliac disease

[Guest guest]

Hi Joze,

The difficulty is that the symptoms are, in some ways, similar to

those of pancreatitis.

The upper-abdominal pain, from which I've suffered severe bouts from

the age of five, is definitely chronic pancreatitis. At the age of

58, I now have extensive pancreatic calcifications, atrophy etc. My

mother died of acute pancreatitis in 1965 after several years of

illness.

In my thirties, I also began to have dreadful steatorrhoea/diarrheoa

and lower-abdominal pain associated with the upper-abdominal attacks

of pain. In 1988, I was diagnosed as coeliac with a duodenal biopsy.

It is true that following a gluten-free diet did produce a great

improvement from the terrible state I was in at the time, but

the " cure " was by no means complete and the follow-up biopsy in 1989

showed an improvement but not as great as the gastro expected, given

that I was very strict about the diet. I was still getting some

attacks of malabsorption etc. and the doc suggested eliminating

lactose as well. This produced a further improvement.

The 1990's were better but I was never without attacks of pain and

malabsorption became a way of life, although never as bad as in

1987/88.

Then, around 2000, the pain attacks, just like the ones I had had

since childhood, became more frequent and longer-lasting.

Eventually, in 2003, they diagnosed advanced CP, hereditary in

nature.

The pancreatologist believed that the 1988 coeliac diagnosis was

wrong, since CP was a perefctly satisfactory explanation for all my

symptoms, and advised to try to reintroduce gluten to my diet. (He

thought that I had improved on the gluten-free diet because it

coincidentally reduced the amount of fat I was consuming. This was

especially true once I'd eliminated all dairy produce as well

inorder to cut out lactose. Before that I had eaten a lot of cheese

which, of course, WOULD be bad for CP.) After 15 years g-f, I was

wary! My gastroenterologist also thought I should be cautious as I

had had some definite improvement on the gluten-free diet.

Eventually I tried gluten again and have been eating it since

September. I don't notice a great deal of difference although

perhaps the malabsorption (much better anyway because I'm now on

Creon) is a bit worse.

My gastro decided to look at every duodenal biopsy I've had since

1988 and compare the results. It does look as though the condition

of the duodenal lining, to use a lay person's language, may be worse

when I'm not on a gluten-free diet (1988 and 2004) as compared with

1989, 1993 and 2002. However, I need to have a much fuller

discussion with my gastro and my pancreatologist before I can be

sure of this. For one things, the reports usually mention duodenitis

and one doc once told me that biopsies taken where there is

duodenitis are not always reliable. I have a copy of my report but

it isn't easy to be sure of the meaning of all the terms. There are

other tests which I could also have for coeliac disease, which I

will ask about at my next apppintment with the gastro.

I'm not sure if pancreatitis can produce similar changes to the gut

as those produced by coeliac disease. I now need to do much more

research and much more talking on this particular topic to my docs.

Trouble is....they may not agree!

Coeliac disease does result in malabsorption, diarrhoea,

steatorrhoea etc. although it isn't accompanied that often by the

sort of crippling pain that goes with CP. The difficulty in

diagnosis arises from these similar symptoms.

This has been a very long reply to your simple question but it

seemed important to give the whole picture!

I've had a gluten-free Christmas (as well as low-fat and non-

alcoholic!!)but I'm still not 100% sure of my situation vis-s-vis

the coeliac. Ah well, back now to eat a small slice of (delicious)

gluten-free Christmas cake! Has to be small because it's not

especially low-fat!

Hope that helps! Enjoy the rest of the hols.

With good wishes,

Fliss (UK)