So I am just about at my wits end with chronic gastric reflux and chronic wind up and down without much smell. Sometimes I vomit with it, and now I can only eat jasmine rice and even struggle to get water down at the moment.
My stomach feels like I have been beat up from the inside from distention and on top of my lumbar/hip/pelvis pain I have this distended stomach and acid reflux.
I have booked a GP’s appointment for two weeks time but I hate going. The GP ‘s just make me feel like I am a hypochondriac so I always get so worried about going and end up sitting and suffering for months before I go!
So my question is does anyone else get stomach issues as I have explained? So I have discoid lupus, coeliacs disease well managed, lactose intolerant plus other new foods. I have had coeliac a disease for years so have managed this for years and never had this like I have had over the last two years….not this bad.
Have a lovely day all of you amazing people who do well just to wake up in the mornings 😘
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M0wnt
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Hi. I have had stomach issues for a number of years. I haven't eaten gluten for over 30 years, developed lactose intolerance in the last 10 but despite managing those for the last 5 years it seemed that any food would set my stomach off. Like you I didn't go to the GP because they make you feel like your just wasting their time.
Last year I was diagnosed with discoid lupus and UCTD after years of unexplained physical symptoms and put on 200mg of Hydroxichloriquine. When I saw the rheumatologist in October he said go up to 400mg. I started that this year and my stomach issues stopped.
I didn't know that stomach issues could be part of the autoimmune conditions (other than coeliac) and the rheuma didn't ask but unless it's a huge coincidence my stomach hasn't felt so settled in years. I still have some motility issues but overall feel better
Have a Google about gastric issues and autoimmune conditions, there's plenty of info about, before your GP appointment so you are armed with some info.
Well I see it is how can they say it’s discoid lupus when SLE can affect all organs. Well I am pretty sure the stomach is an organ so it’s obvs it will be affected.
I think lupus is so misunderstood.
Thank you for your help and I will do a little bit more reading.xx
Morning! I have been diagnosed with MCTD , primarily Sjogren's, with secondary Fybromyalgia and Raynaurds. For years I have been plagued like you with stomach issues and eventually developed diverticulitis. I never considered the two linked, but my rheumatologist thinks there is a connection. I take Hydroxychloroquine and lanzoprozol amongst other meds and lately cut fibre out of my diet like pulses along with alcohol. The difference has been amazing. We are all different and I totally understand how you feel about seeing your GP, mine has been a nightmare... Hope you get an answer soon.
I take all those meds, haven’t had alcohol in a year, given up smoking, don’t eat pulses etc as they give terrible wind. I am currently on rice which helps.
I feel like my excessive wind pushes everything up?
I have really bad acid reflux at times , the gp prescribed Gaviscon Advance which has really helped , I take it on top of lansoprazole when I feel it coming on.
Hi M0wnt, I don’t have the diagnoses you have, just the lupus, but a couple of months ago I developed terrible stomach symptoms. I was constantly nauseous, struggling to eat, pain in the abdomen that radiated to my back. My doc thought gallstones at first, but scans came back clear. Finally I had an endoscopy which revealed an ENORMOUS hernia. I had severe reflux damage, including multiple stomach ulcers, but funnily enough I didn’t experience any of the typical reflux symptoms like heartburn and indigestion. Long story short, I had surgery to rectify the hernia and am on an anti-reflux med called Somac. Each day I feel a little better and can eat a little more.
Please do get it checked out, as your diet restrictions sound severe and you have distention as well. Your doc should be able to order tests at the very least. Please don’t ignore your symptoms, they are real, you are not exaggerating anything! And please keep us posted. Hope you see a light at the end of the tunnel soon. 🌻🌈
Thank you and sorry to hear of your journey. I am thinking it will be another endoscopy as I know I have a small hernia….seen in scan about 6 years ago. I suppose it could have gotten worse. Everything I read about GERD and hiatus hernia makes me think it is along these lines as it all feels like it starts not long after eating and it feels like food just doesn’t go down well or falls on top a belly full of wind or something. 🤷🏻♀️
Thank you for the support and that gives me a bit more confidence to speak to GP.xx
Yes, my pain and nausea definitely got worse on eating, usually 1-2 hours afterwards, but sometimes while I was still trying to eat. Sometimes it felt like my guts were trying to crawl upwards into my rib cage! If you had a small hernia 6 years ago, it certainly could have grown larger in the intervening time…my specialist said mine had been there for 5+ years, so they can sit there for a long time before they start causing you hassles. All the best with your GP, let us know how you go. 👍
Hi, I had really bad gastro-intestinal symptoms for years just like yours. GPs will in my experience will only hand out ant-acids which do not help the problem. I saw a good nutritionist/naturopath and started taking a supplement called Betaine HCL to give me more stomach acid not less, because she said that the symptoms of too little stomach acid can mimic the symptoms of too much. I also started taking gastric enzymes to help my digestion. That was 10 years ago and I have had almost no recurrence of gastric reflux and heartburn. But everyone's circumstances are different so if you can afford it I really recommend seeing a good practitioner for this sort of problem. The one I went to does a sliding scale of fees. Also like you I am lactose intolerant, gluten-free and have lots of other food intolerances and she really helped with all of that. Best of luck
Same here. I keep on telling them that one of the risk factors for low acid is autoimmunity, but they act like they have never heard of it. Is there a test for acid levels, since I would like to find out. I find apple cider vinegar helps my digestion a little bit, as well as digestive enzymes, but still need gaviscon every so often.
i was watching a vid that says low stomach acid can also cause reflux because your opening spasms, but I don't know if the presenter was one of those charlatan doctors.
One thing you may want to consider that has helped me was to switch to alkaline water. For drinking and all purposes. I stopped drinking any treated water. I also take Hydroxychloroquine and Leflunomide and have Primary Sjogrens, RA with some suggestions of SLE but no official diagnosis because I have everything but butterfly rashes. At the height of symptoms I alternated Pantoprazole and Famotidine - 40 mg in morning and 40 at night. Endoscopy is for sure where I would go next. Assume you are avoiding all nightshades and acidic foods and drink like tea and coffee also. I love coffee so switched to a low acid variety and only have 10 oz in the am followed by 16 oz of alkaline water. Keeping the acid intake low has helped me. Might be worth a try if you haven’t gone that route yet.
Hi, yes been on a low acid diet for years. I am really wondering if it’s the Venlafaxine that causes the chronic wind and then it pushes everything up?
When you tell gp’s about wind in belly they just look at you…..I don’t think they get how bad it is when you haven’t experienced it. It really feels like I have been beaten up inside out.
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