Gastro problem

[djsema]

Good morning. Has any heard of Gastrointestinal lupus please? The consultant thinks I may have this.

I’ve been having Gastro problems for over a year now.

I’m so scared of eating because I don’t want to vomit and have diarrhoea.

[Spanielmadlady]

Lupus is known to cause GI issues so you are not alone.ive developed ibs since having lupus for which I'm prescribed mebeverine and that helps.i am slowly working out my triggers.not eating isnt going to help ....you need to eat well to stay as well as possible but I understand your fears.have you considered asking to see a dietian ? Others here need a stricter diet then I do and maybe able to offer advice on which foods to avoid etc .best wishes xx

[djsema in reply to Spanielmadlady]

Thank you for your advice 😁 xx

[Spanielmadlady in reply to djsema]

😘🤗 xx

[Barnclown]

Hello djsema: am imagining your anxiety about eating ...and feeling very sad because even the thought of eating food again frightens me because my version of chronic gastro problems means I cannot digest anything + I hyperreact to every type of food (diarrhea, unable to keep food down etc etc) + my GI tract ‘limps along’ very slowly & inefficiently. My lead consultants (rheumatology + immunology + gastroenterology) say my version of this is due to a Crohns-like immune dysfunction disease + connective tissue disorder related enteropathy.

So, am very much feeling for you. But I’m ‘lucky’ because my version of this was childhood onset & has gradually worsened over the course of 67 years, so i’ve had plenty of time to get used to it, learn self help tricks + find consultants who can understand my unusual case & help me a lot.

am actually relieved your consultant is acknowledging your lupus underlies these Gastro probs, cause I’ve found many consultants don’t realise lupus can affect or GI tract...so your consultant saying this is encouraging me to feel you’re being taken seriously by the health system.

I agree with spanielmadlady: you need to be referred to your NHS hospital’s specialist gastro nutrition & dietetics clinic, where you should see a senior dietician experienced in autoimmune gastro manifestations. Meanwhile, if you’re anything like me, your gastro consultant will investigate your symptoms - am guessing investigations have already begun

Am wishing you every best wish & hope you’ll let us know how this goes ❤️🍀❤️🍀 Coco

[Barnclown in reply to Barnclown]

PS the Lupus Foundation of America’s info on gastro manifestations is quite good, so here’s the link, but maybe you’ve found it already:

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

This paper is more in depth, & has been more help to me:

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

[djsema in reply to Barnclown]

Thank you., I will read it x 😊😊

[Barnclown in reply to djsema]

👍🤝🤞✌️🌈🕊💫🍀

PS Here’s the link to Lupus UK’s healthy eating guide, in case something in there can help...but, if you’re case is like mine, you may need much more specialist advice & care:

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

[djsema in reply to djsema]

Do you have a special diet? Eg gluten fre / milk free, my doctor told me to keep away from them. X

[Barnclown in reply to djsema]

👍 What’s kept me relatively ok all my life has basically turned out to have been a Low FODMAP exclusion Diet....I was onto this even before this type of diet was made popular, because my husband has early onset crohns & was put on Dr Hunter’s exclusion diet in the 1980s when he was part of Badger’s NHS Univ hosp gastroenterology clinic IBD team

I don’t want to frighten you more, but, after 50+ years of health eating etc + coaxing my GI tract along ‘mouth to exit’, a few years ago unfortunately, my version of Chronic Intestinal Insufficiency segued into Chronic Intestinal Failure...so for almost 3 years I’ve been totally unable to digest or tolerate food/food residue of any type.... so gastroenterology’s prescription lab sythesised predigested amino acids by mouth are keeping me nourished & living, alongside rheumatology + immunology meds & also the only totally inert, hypoallergenic, bulk forming, non fermentable, non residue motility med Celevac (Methylcellulose). But my case is v unusual & complex due to having Ehlers Danlos & antibody deficiency disease as well as infant onset lupus

You’ve probably heard of the Low FODMAP Diet, but here is a link to info - there are lots of guides to the diet, eg on Amazon...but do get your doctors’ advice before trying this:

healthline.com/nutrition/lo...

[djsema in reply to Barnclown]

Wow poor you. My thoughts are with you. 💕

[Barnclown in reply to djsema]

Thanks💐, you’re a dear...but TRULY: am V HAPPY & have adapted ok to this regime cause I feel SO MUCH BETTER❣️

[Jmiller623]

Hi DJ. GI issues with lupus happens but is rare. I have a lot of motility issues and esophageal dysmotility on manometry testing. Rice is my enemy and will give me florid diarrhea. I think different foods set people off. I have been tested twice for celiac and both times negative and gluten doesn’t bother me at all.

I think most of my GI issues are from neuropathy so treating the neuropathy has helped.... Wellbutrin, Plaquenil, IVIG. My stools are finally normal. Antihistamines allegra and famotidine have helped tremendously with nausea as well. Anti nausea meds leave me constipated for a few days so I try not to take them.

I was where you are now over a year ago. Couldn’t eat anything without feeling nauseous. Always had loose stools. I promise things will get better once you find what your triggers are and if it is caused by neuropathy. Treating the underlying condition helps too. Also, fatty/heavy meals tend to leave me super tired. I think our metabolism in breaking down meats and fats is also faulty so small, light meals throughout the day helps me fare a bit better. But I do crave and eat a steak once in a while and deal with the consequences.

Hopefully you’ve found a good GI doc or have a good GP. These things are hard to tease out esp when not super common. Sending hugs your way and hope you find answers soon! ❤️ xx

[djsema in reply to Jmiller623]

Thank you. And I’m happy that you’re feeling better. 😀

[KayHimm in reply to Jmiller623]

You need to publish your experience! Such good news that the IVIG helped with the GI dysmotility as well as CNS issues. 🎈

👩🏻‍🔧😍

[Jmiller623 in reply to KayHimm]

I should. You are right. I was waiting for another physician to try it but she had so many side effects. The only thing I had from IVIG was the dreaded headache which wasn’t as bad last time since I was prepared. It causes eczema type rashes but I’ll deal with this since it helps me with more functional problems.

Hoping it remains approved. See neuro optho for follow up next month. Hopefully there will be improvements on exam then I can document its efficacy. 👏👍👌

[KayHimm in reply to Jmiller623]

🎈🎈😍

[Barnclown in reply to Jmiller623]

This is GREAT NEWS💐😆👏👏👏👏👏👏 HURRAH: thanks for the update❣️ I think you & Kayhimm are in the USA?

just WISH the U.K. GOV would ok IVIG/SCIG (intravenous immunoglobulin G Replacement Therapy & Neuromodulation a Therapy for this type of health issues, but at the mo we are denied this in the U.K., both on the NHS & privately. I’m just ‘lucky’ because as a U.K. Immunodeficiency Disease patient, I do meet the official criteria to qualify for immunomodulation doses of 3-weekly IVIG longterm (for safety during COVID, have switched to weekly DIY home SCIG)

But immunomodulation doses are 5 fold less than the neuromodulation dose I’m guessing you’re receiving: 😯

what IVIG dose are you on?

At what frequency & for how long?

HOWEVER 😆, having to switch to weekly SCIG doses SEEMS to have had a slight positive effect on the lower GI aspect of my slow transit dysmotility...I’ve been biding my time ever since that switch early last spring...trying not to jump to conclusions, but I DO seem to find this more frequent dose of IgG serum + my self help techniques + my my other multidiscipline therapeutic meds = coaxing waste-evacuation is that important bit less of a struggle....my feeling is that the neuro aspect of the causes underlying my gastro comorbidities is benefitting...and your GREAT news encourages me a bit: maybe I’m not just imagining this....and even my neurocerebral issues are a bit more resilient 🤷🏼‍♀️🤞...

But, can’t say I’m noticing my immunomodulation dose of SCIG having any pos effect on the childhood onset progressively debilitating neuropathy in my feet & hands, though...but, haha, maybe it IS helping: eg the pain & numbness might be even worse now than it has become 😬

anyway: CANNOT WAIT to get reactions from my gastro + immunology + rheumy consultants at our the video appts we’ve got coming up...who knows, maybe feedback from patients like me might help shift U.K. restrictions on IgG replacement therapy for our sort of AID gastro-related neuropathies 🤝🤞 ✌️this is one of the great benefits of hearing from non-U.K. patients here on our U.K. forum...THANKS for being here!

🤩SO GLAD you’re here giving us your GREAT news❣️ Hope you’ll keep giving us updates ❤️🍀

[Barnclown in reply to Barnclown]

PS in case anyone is interested, here is the official U.K. clinical guideline document for immunoglobulin G treatment (covers both neuromodulatiin & immunomodulation treatment):

assets.publishing.service.g...

[Jmiller623 in reply to Barnclown]

I am on neuro dose. 1000 mg/kg every month. Immunodeficiency dose is 500 mg/kg. SCIG cannot be used for multifocal motor neuropathy/NPSLE. Only Gammagard is approved so IVIG is my only option.

I think it’s hard to get IVIG in the US for neuropathy as well. I just found a doc who actual prescribes it frequently as an MS, neuroimmunology specialist. My husband inquired to the head of pharmacy about approval and making sure we meet criteria for it to continue. I get my next infusion at the end of October and then follow up to see if it’s doing it’s job. He also offered plasmapheresis and Rituximab as options but I’d rather gain more than less antibodies since my immune system is crap anyways. WBC is always 3k and IGs are always low normal to actually low. Figured I was killing a few birds with one stone since IVIG can also be used for POTS as well. I have noticed that my lymphadenopathy does improve after infusion as well. But then they blow up right before I’m due for another infusion.

[Barnclown in reply to Jmiller623]

Thanks! It’s great you’ve got onto this & are liking the results!

Are you taking premeds?

Dysautonomia is me, + Chronic Lymphopenia is my main WBC issue

We’re each such unique cases

Here in the U.K., @ my current weight (approx 60kg), as immunomodulation dose long term for panhypogammaglobulinaemia, immunology has me on:

3 weekly hospital infusion wardIVIG Gamunex dose 25g/30g alternately, with premeds: 100mg hydrocortisone + 10mg antihistamine chloramphenamine (Piriton)

Or

Weekly DIY home SCIG Gammanorm dose: 48ml/8g, with premeds 4mg Piriton

[Jmiller623 in reply to Barnclown]

I get 70 GM over 2 days. They give me tylenol and Benadryl before. I also take 10 mg of prednisone before because it helps with headaches and fluid retention. I haven’t told my provider I do that because I can’t get a hold of him. Would like 100 of hydrocortisone but pred seems to work as well and I have a stockpile of it at home. 🤗

[Barnclown in reply to Jmiller623]

V HELPFUL to know USA rates that’re helping you for all this! Premeds do seem important: I tried without 😬: never again! Oh & I do also take paracetamol max dose

None of the gastroparesis/intestinal failure/pseudo obstruction patients on my uk support group forums are even trying for NHS IVIG. My impression is that most of these are EDS patients. I suspect the U.K. neurogastroenterologist caring for them would V Much like to be permitted to trial IVIG, but this is being stonewalled here. These patients are of course in palliative care. It’s so sad. But their solidarity is wonderful. I feel very to be in with them.

You’ve made my day: am delighted to have your good news + all these details! Have been + still am extremely cautious re trying higher dose IgG myself, because immunology is making such a point about my hypersensitivity...& a close USA friend my age (who is my age + DES offspring like me + has always been highly hypersensitive in many inflammatory ways, was misdiagnosed with CIDP & the skin rashes 2 sessions of neuromodulation doses gave him before he refused more, took 2 years to settle...but have never totally subsided 🤦🏼‍♀️ Poor Thing.

So, for you, IVIG is mainly aimed to be neuromodulation, yes? For sure, even my Immunomodulation dose is hitting the spots I’d hoped to: my IgGs are in normal ref range again consistently, not high, but low normal (although my IgA & M remain below NRF) ...&, aside from doing that, I do sense a damping down of the dysautonomia + slight improved peristaltic action (just enough to have me feeling under a bit less strain re succeeding to avoid tube feeding, TPN, stomas etc)

🍀❤️🍀❤️

[Jmiller623 in reply to Barnclown]

Oh IVIG has definitely helped with swallowing as well. Towards the end when due for new infusion, feels like I’m swallowing rocks even with just water.

Funny you talk about worried hypersensitivity rxns. My rheumatologist wanted nothing to do with prescribing it and left it completely up to neuro. She also feared I’d react and/or clot given my prior reactions to meds. But I had done so much research and once I got the go ahead from neuro, I’d fight any which way to make it happen. It does cause rashes for me but literally nothing worse than mild eczema that can’t be tempered with topical steroids.

To hear that patients are on palliative care before a one time compassionate use of IVIG is so sad. The only reason I got approval is because my eyes are really jacked up. Like he asked if I was okay to drive, which scared the bajeebus out of me. My ability to focus my vision also improves with this stuff.

[Barnclown in reply to Jmiller623]

Yep: it is what it is! There is no likelihood the U.K. will give these poor patients IgG treatment in the near future...but U.K. EDS specialists are working hard at research on our sort of gastro issues...am thinking this is at least in part be aiming to prove tertiary treatments, like neuromodulation doses of IgG, are financially & therapeutically justifiable. In part, this IS a numbers game: such a high proportion of these patients like me are EDS cases in care @ univ hosp gastro specialist feeding issues units + Multidiscipline team care, that the NHS is already snowed under by the numbers & all these tube feeding/TPN/stomas protocols REALLY have now proven very disappointing 🤦🏼‍♀️. Turning the NHS around on matters like this is a major undertaking...🤷🏼‍♀️...so U.K. patients like us are just plain STUCK...individual patients can’t buck the system, no matter how cleverly they campaign...it’s a numbers game

[SWinNorfolk]

Hi, I’m having a gastric flare up right now, mine is more cramping a pain currently but have had vomiting and diarrhoea in past flare ups. I’ve only recently been diagnosed with lupus so currently learning a lot. Still don’t know what triggers things for me, but the pain is more frequent so going to speak to my consultant. I’ve cut out most dairy (still have some), wheat/gluten and have found I can’t have too much tomato, onion or garlic. A friend recommended taking probiotics during a flare so might try that. But for now just eating really plain food until it settles as it seems to make my headaches worse too.

Sorry you’re having these flare up, hope find out more and a way to manage it soon.

Sending love

[SecondLife]

Thank you for asking your question and what interesting replies you received. I thought I was having a heart attack on Monday but stupidly did not call the emergency services, spoke to my GP at 0830 who said it was more than likely GERD caused by Lupus - like you I had never heard of it before, oh well another learning curve to deal with. Good luck

[Barnclown in reply to SecondLife]

That’s interesting, cause my “oesophageal spasms” are heart-attack-like...the only reason I know these aren’t heart attacks is that I’m still alive & my heart tests are ok so far 😉🤷🏼‍♀️❤️🍀

[Barnclown in reply to Barnclown]

Ps my GERD was childhood onset, so I had to learn early how to manage + minimise it. We think my Oesophageal spasms are more neuro-related, than GERD-related

[Pepsiandsky in reply to Barnclown]

I have had sle lupus for 15 yrs and every time I have steroids I have stomach issues. I also have episodes 2 or 3 times a year when I feel fine then always after my evening meal, never earlier, I get bloated and nausea, followed by intense stomach cramps and ultimately vomit til I cant vomit no more, then diarrhoea. Then I sleep for 14+ hours and wake up feeling very bruised and occasional aftershocks. Its horrible and very similar to gall stone attacks I had before Lupus but the pain is central under my rib cage. I have learned over time that raw veg/fruit/salad, too many root veg, brown bread, chocolate - even hot chocolate, bananas, onions, garlic, mushrooms and peppers seem to be the key triggers. Occasionally I have no idea. I take Lansaprazole for Gerd. Recently diagnosed type 2 diabetes but I rely a lot on biscuits as 'safe' so thats hard. I also find prebiotics help and have capsules and the drinks during an episode - not sure how much stays in !

[Barnclown in reply to Pepsiandsky]

👍👏👏👏👏 well done‼️ You’re doing exactly what we ALL need to do:

- listen to our own body, get to know what self help/lifestyle techniques it likes best

- Seek help from primary care via our GP,

- Request referral to secondary care via gastroenterology, should self help + first line treatments inadequately explain + control our GI issues

- Conscientiously collaborate with gastroenterology, + request referral to tertiary care if/when our secondary gastro team’s diagnoses/care inadequately stabilise our issues

This has been my journey for 67 years. My consultants & I suspect my chronic progressively debilitating AID/CTD-related mouth to exit GI issues would’ve become as severe as they finally are now MUCH MUCH earlier, had I not stuck to this sort of strategy & tactics. But, course, COVID makes getting help from GPs+ referrals on to secondary & tertiary far from straight forward...❤️🍀❤️🍀

[LostandFound30]

Sorry to hear that. I’ve been having issues too for the last 2 years and my consultant couldn’t find anything to help as he didn’t think it was connected to my lupus. And because of that I stopped eating and lost so much weight. I did however do a lot research on different diets and I have to say when I tried gluten free products I saw a massive improvement in my gut. I haven’t had any stomach pains or diarrhoea since June/July (started gluten free in April 2020) and I’ve cut coffee, unhealthy snacks from my diet. Its important to know what can also exacerbate your lupus and what works for you. For some reason when I have high intake of sugars such as Coca Cola or sweets my fingers and knuckles are first to swell up. For me giving up on dishes and treats is worth it than me being in constant discomfit.

Hope you feel better soon 💐

[djsema in reply to LostandFound30]

Thanks for your support. My doctor told me to stop gluten and wheat from last year. I think it has helped.

For me to have a celiac test I would have to go back to normal foods.

I’m not willing to do that , I’m very scared I know how horrible the vomiting and diarrhoea effects me.

I do have diverticulitis that was diagnosed November last year.