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Autoimmune or ME/CFS or both?

mermaid

Senior Member
Messages
714
Location
UK
Thanks @xchocoholic
That is interesting re the position of the pain. I guess that I think the gastritis is more likely because I have a history of it, and had an endoscopy to prove it. However it's always wise to check these things out and not assume, so I am going to ask to be referred to a gastroenterologist.

That said, my latest flare up has now completely calmed down since I stopped coconut milk 2 days ago. It seems maybe I have a big problem with coconut, though I can tolerate the coconut oil OK it seems. I have been having the milk in one form or another for some time, initially without problems.

I also stopped goat and sheep yogurt too for now, as I felt that too might be contributing, as it's dairy and I certainly have issues with cow dairy.

Thank you for the reminder re soaking the nuts and seeds - I did know that but keep forgetting to soak them!

Onward and upward!
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
Over the years, I tried but can't handle cow, goat or sheep milk in any form. Those discouraging humans from ingesting these say that these milks are only meant to be ingested by the babies of these animals. It makes sense if you look at their composition.

Fwiw, I really liked my last gastroenterologist but he was mostly trained in traditional tests and treatments. He referred me back to my integrative doctor for anything out of his specialty like food intolerances.

My first endoscopy in 2004 or 5?, showed a long list of problems pre food intolerance elimination and very little after. I still get a few of the old symptoms, like gerd or gastroparesis, from time to time tho. Walking helps my digestion.

Tc .. x
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Gastritis is mostly, as far as I am aware, either H pylori (infective), due to non-steroidals like aspirin (toxic) or atrophic (autoimmune - linked to Hashimoto's). PPI treatment helps H pylori but antibiotics are now more popular I think. I can't see they would be any use for atrophic gastritis with no acid anyway. A good gastroenterologist should be able to sort out what is going on. I would expect it to be fairly straightforward to distinguish atrophic gastritis from H pylori problems on endoscopy and I guess that should have been documented. The fact that you had PPI suggests that this was not an atrophic diagnosis. You say H pylori was not found but I would expect atrophic change to look quite different from the ulcer/erosion type problems that are supposed to be mostly H pylori but can also occur with pain killers. But I am not a gastroenterologist. There ought to be somebody reasonably good in Truro.
FWIW I have had non HPylori gastritis on more than one occasion for months - I never take NSAI'S so no idea what keeps causing mine. I thought this WAS quite common in M.E.
 

mermaid

Senior Member
Messages
714
Location
UK
Well I have just got a referral to a gastroenterologist for the first time in 11 years. I have asked to see him and will hopefully avoid an endoscopy as I don't think they will find much of interest there - today it's feeling lovely after stopping the coconut milk 2 days ago! Also I would rather not have one unless absolutely necessary.

I just want to hear what his opinion is when I tell him what I have done with my diet over the last few years, and how it recurs each time I find yet another food that causes it to flare up. On paper it looks bonkers, but it works.

I think it's autoimmune, but I would like to know what an expert in the area thinks. I don't think I have pernicious anaemia though - maybe the stomach goes into this mild state before that kicks in, I just don't know, but could it be like the adrenal state in that one doesn't go from being OK one day to Addisons the next? If I have kept to avoiding all foods that irritate it then I am guessing that I have prevented it from getting worse.

I am hoping that my GP doesn't mention CFS in her letter, otherwise I may get the 'all in the head' talk.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi, I hope your apt with the gastro goes ok - mine refused to see me unless I had an endoscopy, which I wasn't keen on for various reasons. He wouldn't discuss it, just kicked me off the books.
 

mermaid

Senior Member
Messages
714
Location
UK
Thanks @justy . I have already had an endoscopy but it was 11 years ago so hopefully the GP will mention that in her letter. Actually I had one previous to that also. Will see what happens then.......