To those with stomach issues

[JennaShi]

I was wondering for those that have stomach involvement, what kind of stomach issues do you have/ do you know if stomach issues are common with common with Lupus specifically or more commonly seen with but usually do to another issue.

[Spotty-ewe]

Hi Jenna,

Lupus is known to attack the digestive tract of some people and I for one suffer with gastritis. However whether this is due entirely to the Lupus or a side effect of the Hydroxychloroquine I have to take, has never been confirmed. I’ve had an endoscopy twice over the last 2 years because of severe symptoms but I’ve been told that although the stomach lining is inflamed there is no obvious reason for it. They tested me for helicobacter which can cause such an inflammation but none was present either time. They also found I have a hiatus hernia and I suffer with oesophageal reflux, but these of course have nothing to do with the inflamed stomach lining.

According to Dr Google Lupus quite commonly attacks the stomach lining causing gastritis, so I’ve put it down to that. 🤷‍♀️

Hope this helps. 🤗 Spotty💕

[JennaShi in reply to Spotty-ewe]

Thank you for your response, it was very helpful, have you by any chance tested for parietal cell antibodies? I would be curious to know if you ever decided to.

I too have an inflammed stomach lining, and non errosive gastritis among some other things and was diagnosed with Autoimmune Gastritis, (parietal cell antibodies) so am wondering if there is any correlation. It would make sense too if this was due to medication I think. Did you have stomach problems before taking your medications, do you remember?

[Spotty-ewe in reply to JennaShi]

I’m away in Keswick at present Jenna, but once I’m home again I’ll check my records to see if I’ve been tested for parietal cell antibodies. I don’t think so but I’ll check.

It does sound from what you say about being diagnosed with Autoimmune Gastritis that there is a definite correlation. Apart from nausea during a flare I never had regular stomach problems before taking medication. But of course it is possible that the medication exacerbates the problem rather than causes it.

Anyway, I’ll get back to you once I’ve checked my records. Interesting topic! Take care Jenna.

[JennaShi in reply to Spotty-ewe]

No problem and sounds good Spotty-ewe!

I did go back and look on Dr. Google after my message to you and it doesn’t seem like there is anything in regards to Lupus, but there are some in regards to IBD, Crohns, and Ulcerative Colitis. So it may not correlate to Lupus specifically after all but it might relate to your gastritis. I also noticed it was on the rare disease. Org and my Gastroenterologist didn’t know what it was and I shared articles with him, so 🤷🏼‍♀️. I still do think it’s interesting and hope it may give more insight into your case. I’m still curious though.

[Spotty-ewe in reply to JennaShi]

Hi Jenna,

I’m home again and have been through my Rheumy letters and other health notes. There is no indication at all that I’ve been tested for parietal cell antibodies, despite being sent twice for an endoscopy and twice there being no evidence of a cause for the inflamed stomach lining. 🤦‍♀️ I see my GP tomorrow so will confirm with her that I haven’t been tested and if not why not?🤷‍♀️

I Googled ‘Lupus and Gastritis’ again and the second item that came up was from the Lupus Foundation of America which shows how Lupus affects the gastrointestinal system. They seem to think it is quite common for Lupus to affect the digestive system. Have a look and see what you think.

Anyway, thanks for your interesting post Jenna and thanks for telling me about the testing for parietal cell antibodies. I’m onto it now and will be asking my GP about it tomorrow. 👍🏻 Might be at the root of my problem. 😉 Take care 🤗😘

[JennaShi in reply to Spotty-ewe]

It’s not a common thing to be tested for, so I can see why you may not have been tested. I hope they will test you, there are some good articles online on Autoimmune Gastritis that you can always share with your doctor. I’ve had to do this with my Gastro doc, as he wasn’t sure what was going on either and it took a year before I got my results and was able to have this conversation. You’re comment is hopeful. I’m t does seem that stomach issues come up, and b12 issues come up, i will look up your suggestion. I was looking at past history in one of the autoimmune Gastritis groups on FB and it seems that a good handful of people mention Lupus so that is a bit curious as well. It seems everyone is different and the route our autoimmune issues take can be different as well.

[Spotty-ewe in reply to JennaShi]

Yes the difference between us all and the routes our conditions take does appear to be enormous, but at the same time we Lupies do seem to have many common threads. Let me know if you discover anything else relating Lupus to gastritis and I’ll do the same. Best wishes. 🤗

[JennaShi in reply to Spotty-ewe]

Sounds good and will do, thank you!

[JennaShi in reply to JennaShi]

One more question for either of you. With Lupus, do your Titres as well as DSDNA antibodies go up and down as a result of inflammation or flare or do they stay the same?

[Spotty-ewe in reply to JennaShi]

Hi again Jenna,

I saw my GP this afternoon and asked her to confirm whether I’ve been tested for parietal cell antibodies and she said she’d check that it hasn’t been done under another name - Intrinsic something or other. 🤷‍♀️ If not she said it was something I should take up with the Rheumy when I next see her.

It is only when I see the Rheumy (once every 6 months) that specific blood tests are done so I’ve no idea whether the results alter according to whether I’m in a flare or not. Sorry I can’t help with that.

Have you learned anything new from this post?

Best wishes,

Spotty🤗

[JennaShi in reply to Spotty-ewe]

Hi Spotty-ewe, than you for your note.

Intrinsic Factor is what is made by Parietal cells and. IF is what grabs onto the B12 your body needs in order to process it. Parietal cells make your stomach acid also. Doctors who suspect a b12 deficiency often check for IF, and some check PCA as well as IF as the Immune system has been known to attack both. I’m sorry they wouldn’t check for it, that’s unfortunate. I do hope that your Rheumy will consider testing for it, but I wouldn’t be surprised if he or she said that it’s not their area of expertise but the Gastroenterologist’s.

Nothing so far other than stuff mentioned above, will be seeing my primary tomorrow with a list of questions so I don’t forget. Alot of my doctors don’t know what’s going on so it’s a waiting kind of game for me, I am hopeful though.

[Spotty-ewe in reply to JennaShi]

Many thanks for the explanation about Intrinsic Factor Jenna - that makes a lot of sense. I’ll definitely suggest to my Rheumy that it might be worth testing me for Parietal cells/IF even if only to rule it out as the cause for my otherwise inexplicable gastritis/inflamed stomach lining. I hope she’ll arrange for it and not start saying that it would be up to a Gastroenterologist to carry out such tests. If so I’ll get back to my GP and see if she can’t refer me to the Gastro.

I’m so sorry to hear your problems haven’t been fully discovered and diagnosed as yet. I hope they get to the root of your problems soon and that you get some answers tomorrow. 🤞🙏🏻 Let me know how it goes.

Wishing you all the very best of luck. Take care. 🤗

[JennaShi in reply to Spotty-ewe]

I saw my primary yesterday, and she said it could could very well be the beginning of Lupus (low wbc, low platelets, low Iron, stomach issues etc.) as well as noted that my inflammation markers are down and perhaps high and low ANAs can be attributed to inflammation or flares). I have protein in my urine and a higher with in range of Albumin but everything is within range including creatine so she’s not sure why but acknowledges that protein isn’t supposed to be there, so it seems I have alot these kinds of issues but not full blown out like many others where it’s obvious what the problem is so no clear answer other than keeping a healthy diet and testing vD in December, skin punch test for fine peripheral neuropathy, and a holter monitor test as palpitations have been coming back when exercising. But might an answer to random dizziness/ tinnitus as I found out it’s actually vertigo so she thinks either bppv or Menieres. I hopeful to clear that one up hopefully soon atleast. I think of my mother and how she was Diagnosed with MS. I was able to recover her death certificate but I guess they didn’t do an autopsy so only thing listed was MS. But her first obvious symptom was becoming dizzy and falling down in the middle of a volleyball game and not being able to get up, so I wonder (I obviously have MS ruled out for myself) but I wonder if the dizziness was actually vertigo and if it was bppv or Menieres. I probably won’t get the answer to it as it happened before I was born but I can't help but wonder sometimes.

[Bebe76]

When I am flaring I usually have nausea and loss of appetite. Even when the rest of my body feels OK I occasionally get the same issues. I mentioned this to my rheumatologist just a few days ago when I saw him and he said many of his patients complain of stomach issues. He didn't mention a specific connection to SLE, however. I was also diagnosed with Coeliac disease about 6 months prior to being diagnosed with SLE.

[JennaShi in reply to Bebe76]

Thanks for your note Bebe76. It does seem like there could be alot of factors involved and would make sense with Coeliac. I hope that there will be more clear definitive reasons in the future as whether there is a correlation and or reasons why.

[Melba1]

Hi, I think Gastrointestinal issues are common with lupus - the inflammation can hit us anywhere 😬

I had an endoscopy recently and he found inflammation and gastroparesis. He said he was sure the gastroparesis was caused by my damaged nervous system (I have multiple areas affected by autonomic problems) and that the inflammation was a mixture of the recent lupus flare and all the medication, especially high dose steroids. He did say very sternly as he pulled the tube from my throat ‘you really need to get this lupus under control’ Not really sure what he expects me to do!! 🙄🤣

Are you on steroids? They are known to cause stomach issues.

Did your gastro put you on a PPI too as that can help?

My main symptoms from the stomach issues are nausea, vomiting and pain but I’ve started a soft food diet last few days and think that helps. Although maybe that’s helpful for the gastroparesis rather than inflammation. I guess for the gastritis, both of ours should calm down when the disease is controlled. Most of the rest of me is heading for being much better so maybe stomach takes longer to heal??

I don’t know really but drs will often say something isn’t related to the lupus but then we find out here that so many of us have similar problems

Hope you feel better soon x

[Spotty-ewe in reply to Melba1]

Hi Melba,

I can relate to much of what you’ve said and I agree that drs often tell us that Lupus isn’t responsible for whatever is ailing us at the time. My Rheumy once said, “It is too easy to blame Lupus for everything!” But when they can’t come up with an alternative reason for an inflamed stomach lining or other ailments and then we find that so many others on here have the same problem, what else can we think? 🤷‍♀️

I have been on PPIs (Omeprozole and later Lanzoprazole) but neither cured the gastritis and then began to cause their own problem after a month or two of being on them. As soon as I stop the PPI the problem slowly returns suggesting there is another underlying cause.

I’m only put on steroids if I have a flare which fortunately isn’t often.

So yes, how do we get our Lupus under control?

But if it could be controlled I’m sure we’d all feel much better all round.

Take care. 🤗 Spotty 💕

[JennaShi in reply to Melba1]

Hi Melba, That is interesting that your doctor would say that, It seems there are alot of factors that up the chance of autoimmune issues and some we can’t help.

That is good news that he discovered the gastritis and gastropareisis (I’m sure I spelled that wrong) but am sorry this happening. Did he by any chance say anything is regards to your stomach acid? If you have low stomach acid it might be good to start on some HCL, might help your food get digested better, same for Spotty- ewe, not sure if I mentioned it sorry!

I agree though with your statement it does seem that a majority of people have stomach issues that could be attributed to alot of different things.