To Kris re biopsies

[Guest guest]

Hi Kris,

Well, in fact, you have to be six months on gluten again before you

are considered back to what would be " normal " ie, what your villi

are like on a fully normal diet.

The point is that my villi have never recovered properly anyway. In

1988 I had that test (biopsy) which was positive. A year or so later

I had the follow-up test which is done to see how you have responded

to the GF diet. My situation was improved but by no means OK. In

other words, the villi still showed signs of atrophy. I think it was

just felt that it was so far gone that I would probably never have

complete " cure " . I sensed that the gastro was a little surprised

because he knew me well enough to know I would NEVER cheat on the GF

diet.

Then in 2002 I had another coeliac biopsy. I kept having symptoms

(nothing like as bad as during the 80's....I know now that those

80's attacks were when my CP was going through its worst stage and I

was, in fact, having recurring pancreatitis flare-ups) and I asked

them to keep testing. Of course I kept being told my symptoms were

just coeliac with IBS. In fact, the new gastro may well have thought

I cheated on the GF diet and that was why I was still having

symptoms. Well, that biopsy in 2002 STILL showed typical " coeliac "

signs of atrophy of the villi. However, on that occasion, I also had

duodenitis and Dr Lombard (new gastro) said a coeliac diagnosis

under those circumstances is not entirely to be trusted.

Of course I'm wondering if that might also have been the case back

in 1988. I just don't know. After all, the gastro I had back then

definitely thought initially that I had CP, especially in view of my

family history. It was only when the CT scan and ERCP showed nothing

definite that he went on to do the coeliac biopsy.

I think Dr Lombard thought yesterday that he'd just like to have

another close look at the duodenal mucosa to examine yet again the

state of the villi. He has always been very philosophical about it

and simply said, the last time I saw him, that it shouldn't be a

cause of worry for me because I had been GF for so long now that I

might as well stay GF if I felt well on that diet. He pointed out

that a lot of people with digestive problems of one kind or another

tend to do well on a GF diet anyway, even if they're not actually

coeliac. Prof N. on the other hand,(pancreatologist), thinks it's

worth trying to reintroduce gluten (on the assumption that the

coeliac diagnosis in 1988 was wrong) because it would widen my

choice of foods, especially if I (when!) I become diabetic. As I've

already said, I will go with the flow. I'm OK so far this week, on a

tiny amount of gluten each day, but if, as I increase it, anything

untoward happens, I will simply go GF and stay that way, no matter

what the biopsies show! It's perfectly possible to have a thoroughly

healthy and varied GF diet, even a low fat one.

If I continue to be OK with gluten I might have another coeliac test

in six months to see if it's worse than yesterday, so actually, it

was extremely useful that he took those biopsies. I han't thought

about it beforehand but I'm so glad that he did!

Sorry for the long answer! Hope you are well?

With good wishes,

Fliss (UK)