MCTD and gastritis

[SecondLife]

Anyone else suffer with gastritis and MCTD? Just getting over a really bad flare up of gastritis and hadn't realised that it comes under the heading of auto immune disease, so should I mention it to Rheumy when I see her?

[PMRpro]

I think it is a very specific form of gastritis which is autoimmune and much less common than the usual sort. But always worth the question.

drruscio.com/autoimmune-gas...

[Djlr in reply to PMRpro]

Thanks - that is a great site for very good information on autoimmune diseases with gastritis -

I really appreciate the information.

[Betty909090]

As PMRpro says (suggests) it’s a complex area, “gastritis” is a general term and may be autoimmune OR caused by side effects of the drugs we take?

“Gastritis “= inflammation of the lining of the stomach wall.

Here’s a paper ref. MMF in treating classic AI gastritis when others don’t work for a woman patient:

ncbi.nlm.nih.gov/pmc/articl...

“Classic autoimmune gastritis (AIG) is a gastric-body predominant inflammatory process mediated by antibodies which target the parietal cell H+,K+-ATPase. Patients with body-predominant AIG present with symptoms including epigastric pain, weight loss, heartburn, and nausea.…” etc.

[SecondLife in reply to Betty909090]

thank you, it was my GP who said that it comes under the auto immune, so who knows

[Whitfield2023 in reply to Betty909090]

Omg I've had this for a year now. Always said it was constipation till I was referred for lupus nephritis now I've been told its all to do with lupus this disease is horrendous x

[SecondLife in reply to Whitfield2023]

if it wasn't so complex we would know what we were dealing with😄

[Whitfield2023 in reply to SecondLife]

100% the worse 2 years I have had. But I'm learning so much everyday with this illness.

[Djlr in reply to Whitfield2023]

We have always said in our Group- that many Lupus Flares begin with the Stomach & Gut “out of WHACK”.

Lupus does affect the GASTROINTESTINAL SYSTEM- “SYSTEMIC” Lupus Erythematosus - so CAN affect all SYSTEMS of the BODY

morethanlupus.com/post/lupu...

lupus.net/living/digestive-...

We have varying ways that the GASTRIC SYSTEM is attacked or 1st SIGNAL of Lupus Flare starting.

Hope all this information is helpful- we keep learning 💜🤗💜

[SecondLife in reply to Djlr]

thank you, very interesting and helpful

[Barnclown in reply to Betty909090]

great paper, many thanks!

I’m 70 & a classic case of chronic autoimmune gastritis who managed it pretty well for decades via self/help & lifestyle techniques except during acute flares & emergencies.

But with age, the multisystem debilitation had progressed enough to need more, & as of 15 or so years ago, my v early onset chronic AID GI stuff has gradually been successfully damped down via a 3 pronged approach :

rheumatology adding myco cellcept & pred long term daily combined therapy meds for infant onset lupus & Co (which already included hydroxy)

+

immunology putting me on both long term daily coamoxiclav + IVIG (the antibiotic sorted my chronic SIBO which was contributing to my AID gastritis) for my early onset primary immunodeficiency disease panhypogammaglobulinaemia aka Antibody Deficiency Disease

+

More recently gastroenterology prescribing a special long term combined therapy for all my chronic upper & lower GI stuff including AID oesophagitis, small intestinal failure & large intestine pseudo obstruction (as of 5+ years ago exclusive elemental nutrition + as of 2 years ago weekly sodium picosulfate bowel cleanses with daily glycerol suppositories).

My version of all this is complicated by hypermobile Ehlers Danlos, which is well known to predispose a high proportion of patients to my sort of mouth to exit GI tract issues, & to which lupus inflammatory process is inevitably attracted, making everything worse. I hope to live long enough to see our versions of all this GI tract stuff better understood, building on the understanding in your link + in this Johns Hopkins link:

hopkinscim.org/breakthrough...

💞💞💞💞 Coco

[Betty909090 in reply to Barnclown]

OMG Coco!

Thanks for posting. I don’t know how you’re coping but keep well. Hopefully all the meds are still working!👍

Thanks for the link.

Xx

[Barnclown in reply to Betty909090]

🤗 you’re v welcome…am doing pretty good for an older gal managing such extremely early onset stuff…took decades, but now am with good teams at all my clinics + collaborating much better with my GP surgery staff + all my meds help a lot & I have a big box of magical self help/lifestyle tricks, so… of course this 🫏 life is never easy, even so: sometimes I have to pinch myself, cause I want never to forget or minimise the nightmare of those decades in the diagnostic wilderness - the ordeal almost all of us here more or less endure, sadly. Thank goodness for Lupus U.K. & our wonderful forum ❣️

[Pumpkin2009 in reply to Barnclown]

Hi Barnclown, What have been your symptoms specific to autoimmune gastritis if you don't mind me asking?

Healing hugs!

[Barnclown in reply to Pumpkin2009]

Remember, I’m a Dx overlap which is why SIBO aggravates my gastritis, but the most obvious sign my gastritis is partly down to inflammatory process is that both daily myco + pred consistently help keep it damped down…so long as I conscientiously follow my immunology & gastroenterology protocols. And when I’ve had to pause myco & pred, my gastrtis has always flared 💞

NB originally, my gastritis was biopsied & diagnosed by gastroscopy…twice over the d3cades

[Pumpkin2009 in reply to Barnclown]

Thank you.

[Barnclown in reply to Pumpkin2009]

You’re welcome👍…I’m lucky to finally be with consultants who now know me well & I them…so we have an understanding, which helps us ‘think’ we understand these aspects of my manifestations…crucial cause am now so highly vulnerable/negatively reactive to procedures & the pharma needed to perform them, that we often, via close observation, more or less accept ‘we think’ can be as valid as results based on lab tests etc….collaborating this way feels as much about science as art 💞

[Barnclown in reply to Pumpkin2009]

PS should’ve mentioned that quite severe persistent nausea is probably THE key sign that my gastritis is flaring…I mean nausea that is not damped down by gastroenterology’s therapeutic evacuation protocols + immunology’s long term daily antibiotics

[Djlr in reply to Pumpkin2009]

Website w/SYMPTOMS LISTED for Gastro issues:

lupus.net/living/digestive-...

lupus.org/northcarolina/res...

[Pumpkin2009 in reply to Djlr]

Djir, Thank you so very much for those links. The second link in particular was just what I needed. I am very appreciative.

Healing hugs.

[PMRpro in reply to Barnclown]

Sorry - forgot you have the t-shirt!!!!! Hope you are doing OK xxxx

[Barnclown in reply to PMRpro]

👋👋👋👋😍 doing pretty good, & you too I hope. I’m sorry: missed your reply above so checked out your link: that’s an interesting piece, thanks!

[Stills in reply to Betty909090]

interesting thank you. I have a diagnosis of Stills disease which for me manifests as RD and have recently had an undiagnosed episode of gastric activity. Cancer was the first thing Dr tested for but I mentioned AI connection and he dismissed it. I will show him this if I ever get a f2f appointment

[Energy14]

Hello SecondLife 👋🏼 I have MCTD, and diagnosed with Diverticular disease and esophageal dysmotility dis-order.

There is a connection but Rheumatology do not deal with this area. You will require a referral to Gastroenterology.

All the best, Sending healing Vibes 🫂

[Hamptons]

I would, always good to give them the whole picture. Mine as been much better since going lactose free which is much easier with the rise of alternative versions.

[SecondLife in reply to Hamptons]

interesting thought, I used to use lactose free products for my late husband but have slipped recently, they are definitely back on my shopping list again

[OldTed60]

yes have had this gastritis pain and gastritis has been confirmed with scopes. I have systemic scleroderma and Sjogren’s with hypothyroid and hypermobile EDS. Main disease is GI and Raynauds for me. My rheumatologist referred me for gastric emptying scan to get diagnosed and my neurologist treats Gastroparesis as neuro-gastro issue, gastro came in late and diagnosed and treats me for SIBO.

I researched gastritis myself , couldn’t get B12 injections so started buying and taking Jarrow B12 daily. This is a sublingual version and seems to help a bit with the pain. Also maybe compensates for high dose esomeprazole which can cause B12 malabsorption issues.

I don’t think mine is AI gastritis as stand alone but I think it’s part of the bigger AI picture. That said they didn’t biopsy mine for AI gastritis/ B12 deficiency, just for coeliac some years ago, which was excluded. Nevertheless it flares if I eat even small bits of homemade sourdough bread - although this could be the fibre I guess as all fibre is bad for gastroparesis.

I’d tell your rheumatologist and get them to refer to gastro as scleroderma is one of the 3 conditions MCTD can evolve into. Hopefully not for you but important to get checked out. Low fodmap helps my SIBO but I find very hard to stick to without eating/ drinking processed.

[SecondLife in reply to OldTed60]

thank you, very interesting

[Stills in reply to OldTed60]

great info thanks

[OldTed60 in reply to Stills]

Glad to help. I think sometimes it gets forgotten here that MCTD can become more like Scleroderma or Myositis than Lupus. The severity of my GI was initially attributed to my sjogrens related autonomic neuropathy. However nowadays it’s recognised to be too severe even for sjogrens and is most associated with systemic sclerosis. But Sjogrens also very often accompanies MCTD and this definitely can cause quite severe GI issues so worth considering too re keeping to small easy to digest low histamine and low fodmap meals/ snacks at frequent intervals. Soups, smoothies and soups and decaf/ herbal teas can be extremely nourishing and hydrating and are far more easily broken down than fibrous vegetables, dried fruits, pulses, salads, meats and breads.

[Stills in reply to OldTed60]

thanks OldTed. My diagnosis is Stills Disease which for me manifests as RD. symptoms similar to types of Lupus but is a rare disease so mystifying to a GP and most Rheumys. Diagnosis was 1979 aged 17 now 61 and medication free for the disease since mid 20s but live with debilitating joint pain and fevers. I have mild Raynauds and Sjogrens and strange brown patches of skin growths like-moles which GP can’t explain. The last ten years brought the menopause, lichen sclerosis and intestinal cystitis both of which are AI related. Earlier this year I became unwell and lost 16 pounds in three weeks without sickness and diarrhoea. Cancer was suspected, tests ongoing, omeprazole taken. I do wonder though if Stills Disease could have been to blame in some way. It’s known that Stills can damage organs and autoimmune hepatitis is a possibility. This episode has abated so it’s watch and wait but I’m aware somethings not quite right with ‘tummy’. I’m not under a Rheumatologist and my surgery only offers telephone calls with the locum of the week. So I’m just waiting to see what develops but found your post about GI most informative. Thanks again

[OldTed60 in reply to Stills]

RD=rheumatic disease or rheumatoid? Or other? Read about Stills once - sounds pretty nasty so why not under a rheumatologist I wonder? Sorry if foolish question but I don’t come here much so probably haven’t read up enough but are there no UK specialists who prioritise Stills?

Just looking through my HU e-alerts and tend to notice ones about MCTD as, until weeks ago, I was always being asked by non rheumatology drs if this was what I had.I nodded and shook my head at same time as no rheumatologist certain. Dermatologist was 100% certain in December it’s scleroderma and they were right

It seems MCTD has its own antibody and the prof at Royal Free was adamant that I have full blown limited cutaneous systemic sclerosis formerly known as CREST. I asked if prognosis for this is at least better than diffuse or others like Lupus as I’ve assumed - but he hmmm said not necessarily as it’s the antibodies in scleroderma which point to severity and outlook and mine is an extremely rare diffuse antibody with poorer outcomes. Rarer seems like a bad thing as your own story seems to suggest? Apparently if I have other CTDs such as rheumatoid, sjogrens and lupus as mild overlaps then he said possibly outlook would be more better but usually only if antibodies there too. Polymyositis/ scleroderma overlap CTD worse outlook though and probably another one to monitor for as my antibody can be a myositis one too.

Outlooks: I’m generally a pragmatist so will err on side of so far only GI involvement, Raynaud’s and MSK pain are the big ones I have. Was talking about this to nhs clinical neuro psychologist friend recently and she said it’s the diagnostic uncertainty that most of her patients find distressing or sudden onset so no time to adapt. I’ve had 12 years under rheumatology to adapt so the diagnostic certainty feels very good to me . But think this friend is right as I’m still mulling over and gnawing that this scleroderma professor said I have hereditary hypermobility in my skin and joints. When when I got home my GP phoned asked if he’d mentioned EDS? No and tbh I think lots of rheumatologists suggest stuff that’s just in relation to their own particular specialism little realising how, as parent and auntie, genetics and record of our histories do also matter very much! Also hypermobile connective tissue explains the state of civil war going on in my guts. I said this to him and he nodded but only because he’d already confirmed my antibody and diagnostic profile made severe GI involvement inevitable! 🙄

Lost the only 4 people I have met in person with scleroderma - one a year ago from complications of Covid - others all from pulmonary arterial hypertension or scleroderma heart failure. They seemed to have similar overlaps to mine so accepting that in the end it probably will be what takes me. But hey I’m 60 and pretty used to my stuff. Keeping out of hospital is my priority these days as always find being inpatient so awful! Blank expressions at my diagnoses list and the term “very complex patient” are rather heartsink no?

[Mctd]

I would mention it. I have suffered with stomach issues for years, long before my MCTD diagnosis. I have been diagnosed with diverticulitis and when I eventually saw my rheumatologist, he seemed to suggest a connection.

[SecondLife in reply to Mctd]

thank you

[michaellasmith Administrator]

Dear Secondlife,

Its great to see you have done some research, we don’t have any specific publications on Lupus/MCTD associated with Gastritis. However, I have included a link below that you might find useful for MCTD:

lupusuk.org.uk/wp-content/u...

We always advise discussing any new or persistent symptoms with your consultant or Rheumatologist. Below, I have included a link to a blog article that you might find useful before your next appointment:

lupusuk.org.uk/getting-the-...

Kindest regards,

Michaella 😊

[SecondLife in reply to michaellasmith]

Thank you

[BeeManShrop]

Before being diagnosed with SLE my wife could not swallow and was admitted to a gastro ward -- after 6 weeks she was told she had 3 infections of lungs (pleurisy), oesophagus and also gastritis. Eventually, it turned out to be SLE . We think it was caused by the medication for RA, which she had had for many years, which depressed her immune system so much that she was exposed to these other infections.

It may be worth considering (with your rheumy) the meds you are taking for your MCTD and whether they may be allowing the gastritis infection to exist. All the best.

[Djlr in reply to BeeManShrop]

Another thought - when SLE is ACTIVE, MANY people experience SWALLOWING ISSUES - food getting stuck.

(Dysphasia) - It’s one of the most “common Lupus Symptoms”

uptodate.com/contents/gastr...!

ncbi.nlm.nih.gov/pmc/articl...

Pleurisy is DEFINITELY a Lupus Symptom during a Lupus Flare.

lupus.org/resources/how-lup...

GASTRITISTIS is also a Symptom of a LUPUS FLARE.

ncbi.nlm.nih.gov/pmc/articl...

Lastly-

Patients can have RA & Lupus - they are “common together”.

Lowering the IMMUNE SYSTEM is exactly what the “Lupus meditations” do to the body to keep it from ATTACKING itself, by overreacting to a VIRUS, SUN EXPOSURE, STRESS, Physical Stress, etc.

The Rheumatologist may determine she has BOTH & manage the MEDICATIONS APPROPRIATELY to treat them affectively.

Watching out for WHAT is CAUSING the FLARES, and HEADING them off before they GET OUT OF CONTROL- CALL RHEUMATOLOGIST as soon as she knows her BODY is going “OUT OF WHACK” - gastro issues, CHEST issues, SWALLOWING PROBLEMS, anything making her feel “EXTREME FATIGUE” - and it could be UV LIGHTING EXPOSURE, SUN ☀️ Exposure ( WEAR SUNSCREEN- 50+ everyday- it attacks the body so the BODY responds by “overreacting” and attacking itself), Certain Foods (Alfafa Sprouts, Garlic, changes in the BAROMETRIC PRESSURE - Weather Sensitivity (2 days before a Storm can be bad for Joints & Chest heaviness), certain MEDICATIONS (Sulfa Drugs), etc.

healthline.com/health/lupus...

**Everyone** is DIFFERENT 💜💜💜 in what May cause RA or LUPUS FLARES.

We learn EVERYDAY how to LIVE BETTER with LUPUS .

KEEP a JOURNAL of TRIGGERS & SYMPTOMS- Dates started & how long symptoms last.

lupus.org/sites/default/fil...

lupus.newlifeoutlook.com/lu...

Sending PRAYERS for a better understanding of your Wife’s situation & a GREAT RHEUMATOLOGIST to get her on a stronger path.

[BeeManShrop in reply to Djlr]

Thanks for your comprehensive reply. When she had the infections, in 2020, all we knew was that she had RA. When she was discharged, after 6 weeks, she was much worse than when she was admitted. The consultants advice was to complete a DNR and should she catch another infection -- it would be her last, as she was so weak. Two weeks after discharge we had a phone call from the consultant who discharged her saying that a test had come through showing that dsDNA was over 1000 -- this was the clue that led to the diagnosis of SLE. She was taken off methotrexate and biologic and put on hydroxy instead. We now know that it was a very bad lupus flare that had occurred sadly know -one in the hospital could put all her symptoms together (even after consulting her rheumy) to identify SLE. Many thanks for your interesting reply though.