Thank you to everyone has helped me so far, I’ve found this group so supportive and chatting to some if you really helped me feel prepared for my first 2 consultations.
Does anyone else have gastric issues with sle? I have gastric flare ups with painful cramping that I’ve told is probably a separate issue but have read online it could be linked.
I’m recently diagnosed but not on any medication yet, will hopefully be trialing hydroxychloroquine once I’ve had more bloods and head mri for my head aches.
Thanks xxx
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SWinNorfolk
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Yes.i have a touch of irritable bowel and take mebeverine.never had any issues until i became ill.i know my meds may contribute especially the steroids as I once spent a week on hospital with haematemasis ( bleed in the stomach) and I do take lansoprazole.i still havent figured out all my triggers but I think spice is one.
I hope hydroxchloroquine helps you.dont forget eye tests xx
Thank you Spanielmadlady your advice ahead of my appointment really helped. Sorry to hear you’ve been having issues with this too. This pain is I’m having is like intense cramping, moves around abdomen, went it’s really bad I get faint and vomit. I’ve had flare ups like this for years since before I had my gallbladder out but it’s continued and think maybe it’s linked to Lupus rather than gallbladder, as surgeon didn’t believe the gallbladder/stones were causing my issues. It’s all such a investigative journey isn’t it?!
I get an intense pain which moves down until I'm running to the loo.i can then sit on the loo for ages. Sometimes it can happen a few times but once I've been it goes leaving me drained and nauseous for about an hr which I sometimes have to sleep off.
It certainly is and I'm not sure it will ever really end as we suffer so much with so many different things which affect us all so differently.
I hope your appointments go well.i always say write everything even if you dont think its relevent because to a consultant it might well be.my rheumatologist always asked me about oral ulcers...I said no because i dont get any .what I do get are nasal ulcers but didnt realise they were as important because they never mentioned them...so now I mention everything. Keep smiling...we are all in this investigative journey together 😘🤗❤ xxxxx
Hi, I was diagnosed by a GP with IBS but a few years later had to have the camera up and was diagnosed with Diverticular Disease. Earlier this year had to have the camera down again and was diagnosed with Bile Reflux Gastritis.
I have been diagnosed with Sicca Sjogrens/ Sero-negative Sjogren's as my bloods are borderline. I've not been diagnosed with SLE but they do the blood tests for it every year for some reason but they've not told me why 🤔🤔🤔.
The gastro-intestinal issues and systemic autoimmune disease are numerous and complicated. They are making headway in understanding. I have had GI issues from day one with UCTD. Over the years I have had many tests to rule out the serious stuff. I did show decreased contractions in the esophagus, and they suspect autonomic nerves are involved in certain symptoms. My doctor explained there is currently no way to determine the pathophysiology of motility disorders. They can do neural antibody testing which sheds light on autoimmune GI problems.
Lots of people are here to help. Don’t get discouraged if they say it looks like IBS. They know what signs to watch for. Xrays and CT scans help to diagnose pseudo obstruction which is a serious lupus complication. You may have a lot of tests along the way. You have to report symptom to your GP and rheumatologist. IBS is common in lupus and the thinking has changed that there is an inflammatory basis.
Yes, 100% digestive issues - from inflammation to infection - are very common in Lupus and other autoimmune diseases. Always report and track any gastro issues you have. Gut health and the microbiome are directly linked to specific aspects of the disease and its progression. From experience: complaints about gut issues can often be dismissed. So, it’s crucial that you make sure, again, track and immediately bring up any changes.
And, to stay safe, no crazy diets or abrupt changes while you get sorted out. I can’t even count how many times my friends and family (with good intention) have always said try this or cut out that … with autoimmune issues, especially as sneaky and serious as Lupus, be careful and informed. And, always tell your doc if you have done something like a significant dietary change. Critical info for them.
I've been battling gut issues - from annoying to deadly - for 12 years now. It's an integral part of my ongoing management of my Lupus and SpA. My gastro is on speed dial LOL
Plz feel free to DM me or comment if you have anything you need more advice about tummy stuffs.
Yes, I have GERD, hiatus hernia and an enlarged bile duct. I’ve had it for years and take movical, omaprazole twice a day and gaviscon advance four times a day, plus mycophenolate, gabapentin etc for SLE.
It might help to make a note of what you have been eating and drinking when you have a flare up. I find spicy food, citric juice, tomatoes, alcohol are some of the things that effect me. I never drink alcohol as one drink is enough to set it off.
I hope the blood tests and mri go well. Good luck with the hydroxy, hopefully you will start improving soon. xx
Hallo all, having another flare up, so painful headaches back too
Can’t decide whether to eat or not or what to eat
trying to keep a food diary, I think what it’s telling me is that I can only eat really low fat plain food. Will make sure I write it all done so I can as my consultant next month.
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