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warning re gastroscopy and gastrografin for ME/CFS sufferers . Plus neuropathy ?

Applethorpe profile image
6 Replies

I saw a very nice colorectal surgeon who arranged a CT colonography - as I thought this would be physically less demanding than a full colonoscopy. Two days after the scan I spent the whole day throwing up violently. You can get a ‘rare’ delayed reaction to Gastrografin, the iodine contrast medium. So that’s another thing to add to the long list of medicines I can’t tolerate.

Then I went for the gastroscopy as my stomach seemed to be getting more swollen (maybe related to the gastrografin ? ) It was awful. I took a month to recover. And it really told me nothing. The biopsy was negative for h pylori which only confirmed the results of the stool test. The letter said I have ‘chemical or reflux gastritis.’ I’m not sure whether that positively rules out autoimmune gastritis.

Meanwhile, the strange sensations in my fingers and tingling feet have suddenly returned. I have also just been diagnosed with diabetes (which I reckon is type LADA). When I first had the tingling nine months ago I was only ‘prediabetic’ and it seemed to resolve with some Vit B12 sublingual. The tingling was then fully absent for maybe four months. So it’s not cut and dried that it’s diabetic neuropathy rather than a B12 deficiency. Hmmmmm….

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Applethorpe
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6 Replies
charks profile image
charks

Gastritis is a common cause of vitamin B12 deficiency. So it's very likely you are B12D. Which would explain why your tingling got better with B12 supplementation.

Applethorpe profile image
Applethorpe in reply tocharks

You would think so…

You’ve reminded me that I’m taking omeprazole on an ongoing basis, so I may be deficient from the treatment for gastritis, even if not directly from the gastritis itself. Or both.

I’ll resume my B12 regime after an Active B12 test tomorrow. Of course my serum B12 is very high with the supplements - but I’ll post back whether it’s actually changed my Active score.

Oddly enough, the new tingling etc came on suddenly a day or two before I suspended the B12. It was prominent for a week but has subsided again in the last day or two - while I’ve been off the B12 !

At least I don’t have an irony deficiency. ( sorry bad joke ! )

charks profile image
charks in reply toApplethorpe

You've probably done this but have you tried eliminating gluten and dairy. You may have tested negative for antibodies but you can still be gluten / dairy intolerant.

Applethorpe profile image
Applethorpe in reply tocharks

Hi,

I’ve been aware of these issues for years - particularly ME sufferers going gluten free. It’s not something I’m prepared to embark upon as my diet is mainly youghurt and toast ! Well, not quite that bad, but I find it so difficult to eat meat and veg in quantity, particularly since my thyroid went phut.

I’ve got an appointment coming up with an endo as I want to get to the bottom of what’s really happening with my thyroid ( cycling symptoms of over and under with normal tests .) It would help if I could eat more normally.

charks profile image
charks

Why do you find it difficult to eat meat and veg? That is the basic diet that humans evolved on. Gluten and dairy are quite a recent additions to the human diet.

Applethorpe profile image
Applethorpe in reply tocharks

It’s what I was brought up on, too !

I would dearly like a doctor to get to the bottom of my stomach problems. Hopefully the endocrinologist will take these issues on board.

My appetite leaves me during periods of ‘ underactive’ thyroid symptoms. I can’t face these foods and I suspect that if I forced them down the result would not be good.

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