Autoimmune CP?

[Guest guest]

Hello Paget and everyone,

You're so right about this disease. It is unpredictable and can be

so debilitating.

Just at this moment I am having less pain but I daren't let my

pancreas hear me say so or he (???!!!) will begin to growl again.

My CP is very advanced, pretty well at burn-out stage, they think,

so that helps pain-wise. I have to take Creon with my meals and

follow the low-fat, alcohol-free diet. Because I am also coeliac, I

have to avoid gluten as well. (What on earth do I find to eat?!) I

have certainly had more than my share of dreadful pain, from

childhood onwards, and awful malabsorption in my 30's and early

40's.

Just at the moment I am at the best stage for me....less pain than

I've had for years but not yet diabetic. I know either of those

factors could change in a trice. The docs expect me to be diabetic

very soon.....although it is two years since they said so.

I have been looking up some references to autoimmune CP. Some docs

are still not sure if it actually exists as a separate syndrome but

most seem to think it does. I was interested to see that

calcifications are rare with this form of CP. I actually have

extensive calcifications throughout my pancreas. It may be that the

blood tests will not indicate autoimmune pancreatitis. I don't know

enough about autoimmune diseases to know what could show up. I am

having to research this subject now. I already have coeliac disease

which is also an autoimmune condition. I am going to ask my GP to

investigate rheumatoid arthritis as I have joint pains as well.

It may be that the Professor I usually see will not agree that I may

have autoimmune CP and will stick to his first diagnosis of classic

hereditary pancreatitis. However, many of my mother's symptoms,

apart from her CP (she also had calcifications), would be explained

if she had also had an autoimmune condition. She was desperately

ill with rheumatoid arthritis-like symptoms which led to her being

wheelchair-bound for a few years before she died in 1965 of an

attack of pancreatitis. She was terribly ill by that time and hadn't

eaten normally for years, so she had no stamina. My docs have

pointed out that they could not nourish people at that time in the

ways they can now, TPN etc.

At Christmas I started to learn to play the piano. I am hoping it

will help to keep my finger and hand joints supple. I have had 5 or

6 lessons and I find it immensely satisfying to knock a little

melody out of the piano...even though I'm so slow and have to

practise so hard just to make a little progress!

Tomorrow is the May " bank holiday " (day off work for most people,

not just those in banks!) in the UK so we have a three-day week-

end. For once, the weather has been lovely and I am enjoying a very

restful time. It's tempting me to think about retirement again! I

just can't make that final decision! Still get a buzz from the job!

Take care everyone,

With warm wishes,

Fliss (UK)