From IBS to ME – The dysbiotic march hypothesis, 2020, Berstad

[Kitty]

I've never had gut symptoms, despite repeated antibiotic use when I was very young (I had viral ear infections - the antibiotics did not help). I did the uBiome test a few years ago and nothing particularly stood out. ¯\_(ツ)_/¯

Must admit I've only ever had IBS due to developing potato intolerance. For the first 40 years of the ME, there were no IBS symptoms at all; now I know that I need to avoid potato products, my digestion has returned to normal.

Some ME patients, like patients with primary autoimmune diseases go on to have issues with gut motllity and gastroparesis.

I had gastroparesis when my ME first started, but after a while it went away of its own accord. I don't know whether the two things were connected – there were no changes in the rest of my ME symptoms as the gastroparesis gradually faded away. Nearly everyone on my Mum's side of the family has needed treatment for h. pylori infections, me included, and I've often wondered whether the gastroparesis was another manifestation of this.

 

[Invisible Woman]

I had gastroparesis when my ME first started, but after a while it went away of its own accord. I don't know whether the two things were connected – there were no changes in the rest of my ME symptoms as the gastroparesis gradually faded away

I don't know. I'm talking about gastroparesis that has to be managed on an ongoing basis. At the mild end it may mean managing by diet but at the more severe end we're talking feeding by tube.

 

[Kitty]

I don't know. I'm talking about gastroparesis that has to be managed on an ongoing basis. At the mild end it may mean managing by diet but at the more severe end we're talking feeding by tube.

I was lucky in never progressing that far. I was severely malnourished for about eight years – 5' 9" tall and I struggled even to keep up to seven stone – but of course as a teenager in the 1970s, no-one believed me that I didn't have anorexia nervosa. I'd never heard of gastroparesis at the time.

Ironically, the most helpful people were the psychiatrists to whom I was repeatedly referred for anorexia. They all quickly realised that it wasn't an eating disorder; the last one was also gastrointestinal surgeon, so he got me onto the right pathway for diagnosis. Similar symptoms came back about 30 years later, but by that time doctors knew about h. pylori and a course of antibiotics sorted it out.

There's probably a 50/50 chance it was the same thing the first time round. It could have cleared up naturally, or been helped along by the repeat doses of dental antibiotics I was given when I went through a phase of getting abscesses.