Bloating with Sjogren

[Mariechristine]

Does anyone experience severe bloating with Sjogren? I have had episodes for a year. Before the vaccine ( April 6th) which totally triggered the autoimmun disease .

I get very bloated regardless of diet. ( i have tried everything). I now feel some burning sensation and discomfort in lower back. Left side.

Did urine Sample with rheumatologist. No protein. All good. Any advice ?

[smileyface1]

I have had real bad bloating lately and thought it was being caused by the omeprazole, but I don't know. It's awful though.

[karmel]

I I think that bloating\gastric problems is one of the symptoms that you get with having SS - I also have IBS and have a lot of food intolerances.

[dg70]

Me too. Sometimes in the evening my whole abdomen puffs out and is rock hard. IBS symptoms too. I agree I think bowel issues go hand in hand with Sjogrens been having this issue for a few years. comes and goes regardless of what food I eat. Hope you find a solution.

[Mariechristine in reply to dg70]

Thank you. It is so random. Episodes are longer every time. 😞

[dg70]

It's so uncomfortable but thinking about it it might be slightly better since I've been on Pilocarpine, not sure why, only that pilocarpine for me affects the bowel and intestines in a 'no build up but let it all go' sort of way and maybe the gas etc.. isn't building up so much.😆 I'm on three times a day as I have to take it with food or the effects get a bit extreme leading to incontinence. 😵 I'm only a few months in so the effect may change. ??

[weathervane]

I have ibs Sjögren’s and diverticulitis, i take colofac which has helped. I avoid raw onion and garlic though can cope with powdered, tomatoes can be an issue as well . Hope you find something that helps xx

[Mariechristine in reply to weathervane]

Thank you. How were you diagnosis? What test do they give you ?

[weathervane]

Hi Marie , i had bloods. Biopsy of lymph nodes , full body mri and scan of salivary gland . I can’t tell you which bloods as i felt very ill when seen rheumatologist. I was started on rituximab very quickly within months and made a great difference to my life and health. Doesn’t work for everyone but has for me xxx

[DJK99]

Hi there - I have very bad bloating all the time now 24/7, whether eaten or not. Been going on for about 2.5yrs but worsened during that time. I joined the British Sjogrens Assoc this year and they sent a very helpful load of info on Sjogrens and the gut etc. It's so common. I have dysmotility, slow transit, severe constipation, IBS (diagnosed on line last year, yawn) and umbilical hernia which is permanently pushing out, despite having been operated on 4yrs ago (although had that since 21 due to over exertion - and am nearly 59 now). I am on the FODMAP diet now and find that has helped. Have you done it religiously?

I take bisacodyl for constipation which I think is too harsh and am going to discuss this when I finally see someone at my next digest diseases appointment... been two on the phone in the last year and it's not good enough. I also used to take buscopan for the horrific stomach/intestine pains - but realised I was taking them too close together (with the laxatives) so stopped doing that and it really helped with the agony! But still the bloating - about 6mths pregnant whole time - not very nice as always had such a slim figure and really look after myself.

I'd try the FODmap diet (can find it on line) although you said you'd tried everything - I found removing broccoli was a game changer! But lamb and fatty foods are a complete no-go too - and no white bread, or white anything ie refined rice etc... rubbish food anyway as all goodness taken out of it. And do you drink at least 2.5litres of water a day? Essential. Still bloated, but helps with the sjogrens symptoms, sicca and arthritis, skin, and gut movement etc.

Hope that's helpful - maybe call the Sjogrens Assoc or ask gp for referral to gastro if not already under them?

All the best. D

[Mariechristine in reply to DJK99]

Thank you so much. Since i started Plaquenil, the bloating seems to have disappeared. But again it used to be so random, it was so weird, episode would last longer each time. Might all be a coincidence. So far over one month, no blaoting whatsoever. 🤞🤞🤞Thank you again for your long response.

[SjogrensinTexas]

My rheumatologist recommended a gluten free diet. While i didnt test for celiacs disease, he says that gluten is especially hard on Sjogrens patients and triggers discomfort and flares. Maybe tru it for 4 weeks annd see if symptoms lesson. He also said to avoid UV rays. So I wash clothes in a UV barrier detergent and wear sunblock when out doors including car trips and errands. That has lessened intestinal symptoms dramatically.