Hi folks, is it common to have autoimmune plus IBS? and how do you know if they are seperate entities or part of UCTD? I have diagnosed esophageal dysmotility, and have to be careful how I eat to avoid spasm and blockage. Now I have something like IBS -c, and I've had various GP tests for blood in stool, inflammatory bowel disease, celiac, ovaries check etc all negative. My nice GP has referred me but I found out its a 10+ month wait! Ive tried many things myself, saw GP again yesterday in desperation and she prescribed mebeverine. Some of my UCTD syptoms seem to come and go for weeks or months at a time but the guts problem has been solid since January. has anyone else had this problem?
thanks in advance!
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redmaggie
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Waiting lists are certainly getting very long and I'm sorry that you are struggling like this. I don't have esophageal dysmotility but struggled with horrific bloating, pain etc for quite sometime before and at the beginning of my diagnosis. I think there is research that is linking the gut and our autoimmune diseases. Others will know more about this.
Had a colonoscopy, ovaries checked etc but like yourself all negative. The gastric consultant did suggest that I try FODMAP, you may have heard of it. I followed it very carefully and identified some foods which played havoc. I can no longer eat gluten, onion and garlic. I also have to ensure that I don't overdo foods like chickpeas, lentils or other high fibre foods as they can really unsettle my system. It has become a way of life and I have learned to read my body and adjust what I eat. Certainly, no processed foods (not eating garlic and onion really ensure this anyway) Sorry if this is something that you are already a pro at, but if not I hope it helps a little. x
Hi Rosie, thanks for the tips - its good to hear that you have found some triggers to help with your symptoms. I can only identify onion and for some time have only used small amounts in cooking, and Paxo is a mega laxative, who would have thought! As for the fodmap diet, it seems overwhelming in scope but I'll have to give it a try soon.
Just to reassure you that FODMAP is easy once you get going. I honestly didn't feel that I had an option I was in such a state I had very rare extended time off work. I sat with the red / green list in front of me and went shopping. Some adjustments but supermarkets are well set up for gluten free, lactose free etc. I find I can't even cope with a trace of onion and garlic. Many sauces etc have 'natural flavourings' often this includes onion powder. I use Bays kitchen - got the FODMAP sauces, soups, recipes etc. Not always cheap but have been a staple and I have never suffered after eating one. I don't get the laxative effect, I just feel very sick, seize up, bloat for days - so much so that I can hardly bend over. Apart from the occasional slip up I haven't looked back.
I am allergic to all alliums (have been since birth; nothing to do with lupus - I don't think!) and find FODMAO helpful, but they do allow onion salt and oil and garlic salt and oil (as apparently gentler on the system) so do be careful checking ingredients. I second the recommendation for Bays Kitchen.
Yes, always worth checking the ingredients. The changed the recipe for baked beans once and boy did I react! I honestly don't try garlic infused anything as I have been so sensitive in the past. I think the Johns Hopkin site mentions onion and garlic but for others the jury is out.
Hi. Years of irritable bowel and nervous tummy since I was a child, after I had a bad case of measles. Settled down till I developed Lupus 30 years ago. Eventually had my appendix out 10 years ago, was very manky according to the Dr so I had to have full surgery rather than keyhole. Since then have had random pains on right side , due to the scarring they say. Totally unpredictable. Bad at present since I started on BP tablets and had my 8th? Vaccine. I'm sure all my meds have made it worse. I had a year of gynae tests as they thought it was my ovaries, it wasn't.
Modern thought is that the bowel and immune system are closely connected, makes sense to me.
I have to be very careful about eating to many beans, cabbage etc . If I eat unhealthily my bowel is fine ! Sods law! I hope you can manage yours , it's just so depressing really and socially limiting .
Second that about the cabbage, beans etc. I can afford one meal and then have to go low fibre to allow everything to settle down. If I go for a meal prepared by anyone else I wear clothing with an elastic band as I know I could end up two dress sizes bigger with sudden and severe bloating. My system doesn't cope with ultra fibre meals and I love vegetables etc.
I empathise with the pain from scarring. I had severe endo and it wasn't until I went through menopause that the pain from adhesions and scarring reduced. Get the odd twinge now and then- a trip down memory lane I could do without.
Hi, I have coeliacs and lupus and my diet has been good but I still have had awful trouble with food comin up, awful burning, nausea and sickness. I bloat, I get sweats when it is gurgling and hurting all in my left side. I was told to do FODMAP and I found onions and garlic, gf oats, soya, lactose, lentils, chickpeas i can’t eat as they make it ten times worse. I also can’t eat sweeteners and fructose. Fun eh. Apart from gluten and lactose which I never eat, I will drop the rest in a meal a week as it’s supposed to be good to reintroduce. I had GF granola last night and had the worst night of peeing, sweats and windy belly. This morning diarrhoea.
My upper digestive track I find I can only manage by the amount I eat. I can’t eat heavy meals like beef dishes and a lot of meat, or stodgy stuff like pizza, it sits in my belly and will come up every time I burp. I am waiting to gastro again 🙄.
It’s tough and have done this for years, and it’s so much easier than twenty years ago. You can get apps with the good foods and bad foods on, and I also have separate food basket and cupboard for my foods. It’s hard but well worth it. Just home cooked food full of goodness. You can do it, believe in yourself and you will see rewards in a week and that feels so good on your belly. It hasn’t completely gone for me as I think my bowels may be damaged now 🤷🏻♀️ who knows….but it has got worse since COVID x 💯. Good luck.xx
sorry to hear of your difficulty. At my age I'd rather not look pregnant when the rest of me is thin. I guess the diet thing is down to planning, I'm sure now I can do it!
I have PMR, another autoimmune disease. I had been suffering from diarrhoea (no pain) every morning for a few years too. The GP did a calprotectin test which measures inflammation in the gut from a faeces sample. The levels indicate IBS, or IBD (which is ulcerative colitis etc) depending how high they are. So there is a direct connection - another inflammation and possibly linked. Mine was borderline between the two conditions.
A colonoscopy and biopsy to check for microscopic colitis was normal. I stopped red wine and onions. No more diarrhoea. I have to be careful when I eat out though, as, for example, fish batter can contain things that upset me. I can now have the occasional red wine and the odd bit of onion as long as it's well cooked. Garlic is usually fine.
Yes my hubby can't eat onions so I'm used to checking ingredients lists. Virtually every preprepared meal and pie has onions in.I think this is why I've become intolerant to them too! I don't eat them any more, so when I do, e.g. at a meal out, they kick everything off.
I have I'm sorry to say. First diagnosed with SLE in October 2018, then re-diagnosed with UTCD in 2024. I was told I have IBS but my symptoms have been chronic for well over a year. Triggers are stress and certain foods like dairy and wheat. Piercing stomach pains at times, nausea, opening my bowels for 3 or 4 times in an hour in the mornings and this prevents me eating if I have work visits so that I don't need to ask people to use their toilet. I have been out socially and taken unaware, most embarrassing. I have an endoscopy booked for 17 August and a re-scheduled gastro appt at a different hospital on 23 August. I have zero energy sometimes to the extent I could lay on the spot I stand, train station, supermarket, etc. My stool has been tested about 3 or 4 times since August 2023 with nothing to report apart from some signs of inflammation. It is physically and mentally draining. A 12 months wait for urgent gastro appointment. I am hoping to get some answers from health specialists. Currently working with the dietitian on eliminating foods that might irritate the gut and exacerbate symptoms. I wish you and anyone else with these issues positive energy and relief from these awful symtpoms.
I'm sorry to hear that you are struggling. I dont usually have the frequency problem mostly the reverse. the long wait for help certainly adds to the stress we are told to avoid. Good luck with the dietician.
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