Hi everyone, Like most PwME I've been through an array of symptoms since coming down with the illness six years ago. For the past 18 months I've had increasing discomfort in my stomach, and a recent gastroscopy and biopsies show I have erosive lymphocytic gastritis. I don't smoke, don't do alcohol or take NSAID's, and I'm not overweight. Additionally, I tested negative for Heliobacter pylori infection and I'm pretty sure I don't have Coeliac disease. I've been on a strong dose of PPI's the last six weeks, but my symptoms are worse than ever. Can anyone tell me whether there is any chance that the ME is an influencing factor in my having developed lymphocytic gastritis? And can anyone advise me what I can do to alleviate my gastritis symtpoms or, better still, make them go away entirely? My GP has simply said they don't know what is causing my gastritis and I may have to be on PPI's long term. This is not really a very helpful response, especially given the complete ineffectiveness (so far) of PPI's in resolving my problem. I live in the UK. Thanks in advance for any responses.
@Aurator, I am not aware of any known link between ME and lymphocytic gastritis. From what I can see it is an uncommon but recognised form of gastritis that may not have any specific relation to Helicobacter. I don't think anyone is going to be able to advise anything specific, and of course forum rules are against that. I have not yet found anything on PubMed indicating specific treatments. The fact that the specific diagnosis has been made suggests that at least someone involved has specialist expertise, but you have not indicated whether or not you have seen a gastroenterologist. The advice has to be to follow what your medical advisors suggest and maybe ask for further specialist medical advice if you are not happy every avenue has been explored.
I had chronic gastritis confirmed by a gastroenterologist biopsy with negative Helicobacter. I have no idea how the lymphocytic version compares. The GI doc had no suggestions on how to treat in my case other than PPI. The field does not seem to have advanced much in all these years. When ME became severe the gastritis became worse. So for me there was a relationship with ME. My breakthrough for treatment came when I received an MCAS diagnosis and started taking OTC H1 & H2 antihistamines at night, and ever since the gastritis has improved. I was surprised that it took H1 in addition to H2 (H2 is often recommended for gastritis as an alternative to PPI). Might be something to discuss with your GP/gastroenterologist as the digestive system has a lot of mast cells.
Many thanks for your answer. No, I haven't yet seen a gastroenterologist in any meaningful sense. I'm told the person who performed the gastroscopy etc. was a consultant gastroenterologist, but the specific diagnosis (based largely on the biopsies presumably) was only obtained some time after the procedure and given to me in writing via my GP. I've not had the chance to discuss the diagnosis with a consultant, nor with my GP; when I last saw my GP a few weeks ago (shortly after the gastroscopy, and ostensibly to discuss the results) the results from the lab turned out not to be available. I'd been told immediately after the endoscopy that I had gastritis but it wasn't yet clear what kind of gastritis I had. It's perhaps a little early to be asking for further specialist advice, but if the PPI's haven't improved my symptoms after another few weeks, I don't really see what I can reasonably be expected to do except seek further advice and, if available, an alternative treatment. If there isn't one, well, at least I can say I already know what it's like living without any effective treatment for a chronic medical condtion. Many thanks for the information.
@Aurator As you have biopsies available at the pathology lab you can ask your GP/GI doc to put an order in to stain for mast cells and count the density. Typically they stain Tryptase, CD117, & CD25 as shown on page 3 of this presentation. That would help see if mast cells could be playing a role in your case. http://handouts.uscap.org/2016_cm16_lamhi_1.pdf
