Does anyone have bowel problems ?

Hi does anyone have bowel problems with lupus. I have lupus & fibromyalgia & for 8 weeks now have had chronic diahorea . So fed up of waiting to see a consultant on the NHS I paid private. He's now going to pass me over to NHS now to have a camera up & down. It would be too expensive to have these tests done privately. I just so hopeI haven't got to wait too long to have them. Making me feel so exhausted & been unable to leave the house.

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19 Replies

  • Hi there no doubt they will be looking for Coeliac Disease which is prevalent in autoimmune disease as an addition or in it's own right, however please beware that fully blown gluten intolerance which does NOT show up in these tests is very common also. I gave up gluten totally 15 months ago and am much better for it... totally gave it up, also Fibro often turns out to be non diagnosed Thyroid problems. I also had that amongst other things. I continue daily to take a strong probiotic and Manuka honey and my gut is fine now. Mary F x

  • Arh thanks for your input Mary, very interesting ! I have wondered if this is coeliac's as I'm getting pins & needles & numbness in my hands & feet & apparently thats common in coeliac's. Do you find eating gluten free hard & how is your weight eating gluten free ?

  • My weight is better on gluten free and also since treating my thyroid.. notorious for not showing up in standard NHS tests. Ceoliac Disease will show up with camera but not Gluten Intolerance which is why I included that medical paper. If you cut it out totally for a few weeks you will find out.. also gluten problems very typical with Thyroid problems. Best of luck. Mary F x

  • Arh thanks Mary hope it's sorted soon feeling so exhausted. Always something hey! Everything so difficult with me especially having had a kidney transplant. Had such a bad time lately as lost me Dad a month ago & he was the one who donated his kidney to me years ago. Such a sad time. My parents went to Tenerife on holiday & my Dad passed away in his sleep bless him , thanks again Mary x

  • All the best to you. Mary F xx

  • I have had tummy and bowel trouble since i was diagnosed and put on hydroxy for lupus, i suffer quite a lot from IBS and my gallstones have also grown and had a little family of their own, I do have good days though but really have to be careful when and what i eat,cant have a good curry any more which i love.

    I got some medication from the doctor which does help a bit and will be having my gallbladder removed in the near future.

    hope you cangetit sorted soon.

  • Yeah after having campylorbactor a few years ago they said I had IBS but it was never as bad as this. I've had stool tests & they said there was no bugs in it so I was wondering if it's coeliac's disease. I suppose I will have to wait & see the outcome & results of all the tests. Anyway thank you for your input very much appreciated x

  • Hello. I also had chronic diahorrea for weeks and was fading away. In the end I collapsed and an ambulance took me to hospital. Prior to that for weeks my GP was just trying me on different things but all the time I needed to go to hospital. After having the tests which you are going to have plus others too, it was found I had 'bile salt malabsorption'. I also had ulceration all down from my throat to the duodenum and an ulcer on there as well. I thought I was in hell. So - I am on different medications and hoping for the best but I am on a lactose free diet and also being very careful what I eat. Apparently the bile salt thing is to do with the salts not being absorbed into the blood and taken away from the body and it had all mounted up and made me toxic. I have sachets of powder which I make up with water and take before and after I eat and this now binds the salts and get rid of them down the loo instead. It can be difficult but I'm here and trying hard to get well. Of course with SLE I do have other problems too and pain and it's hard but really what can we all do? I know how hard it is for you to be positive when you feel so weary and feel also that the doctors aren't doing enough. You ought to tell your doctor to refer you under the three week thingumajig where it's urgent and the hospital can't keep you waiting for more than three weeks. Once you've been looked at and had tests they will be in a position to advise you better. Keep the bile salt thing in mind and refer to it when you speak to the doctor, - you never know, it could be the same thing as me. I do hope you feel much better soon and keep your chin up.

  • Oh you poor thing you really have been through it bless you. I will defo keep it in mind. I so hope you stay on an even keel now they have found out why all this was happening to you. It must be so difficult for you. Thank you so much for input & explaining all your problems. Take care & all the best.

  • I was very interested to read your reply and could almost have written it myself. Diahorrea has been a problem for me for years. I'm now on the bile salt powders and find a lactose free diet is helping. I have SLE and 'sticky blood' and Fibromyalgia. I understood that the bile salt thing was a result of having my gall bladder removed, which you don't mention, do you still have a gall bladder? I'm sure my grandmother had a saying something like 'creaking doors last longer' hope it's so for all us luppies.

  • Arh no I haven't had it removed. Still waiting for tests it's been 10 weeks now of uncontrollable diahorea. I paid private 2 weeks ago & now got to wait to hear from consultant to have some tests done. The trouble is it's giving my body a real hammering & my transplanted kidney results are starting to go a bit topsy turvy. Seeing my lupus consultant now Thursday so will see what he has to say. Anyway thanks for your response Calla much apprreciated. Take care x

  • Yes, I still have my gall bladder. I do have to take a tablet called Prasugrel which is a blood thinner so maybe I have sticky blood too! I know I have coronary heart disease. Also I was told for years that I had Fibromyalgia until I was diagnosed with SLE. After reading what other people are saying on here I wonder if I should also cut out gluten and see how it goes. I think I've learned more on this website than I've ever learned from my GP or the specialists. I know we are all different but we are all bound together in some way aren't we. I hope your grandmother was right! I send my good wishes.

  • Ive had Bowel Problems ... sometimes I know Im going to suffer like IBS but other times Ive had really bad shooting stabbing pains that has had me on the floor in agony ... My Dr said its all connected .. I had alot of bowel trouble when i was younger and taken into hospital ... inc blood loss .. but never got to the root cause .. Ive only been diagnosed this year and feels like every symptom ive had in small doses have come to a tip and have hit me all at once.

    Dr has put me on Colofac ... stop the muscle spasms and pain ... it takes the edge off ... still get gastric and cant get to the toilet ... which is embarrassing sometimes. I have lost weight and pain is worse than giving birth. I see Rheuma in a few weeks so Im taking a list of symptoms Im suffering ... see what he says ... Really hope you are feeling better soon ... tc -x-

  • I too have coeliac and sle, diagnosed in the same year. My main symptoms were bowel issues initially then the sle symptoms appeared. Make sure you do not exclude gluten from your diet prior to the blood tests or it may result in a false negative result.

  • Hi Bebe How do manage on gluten free? Did you loose weight before you were diagnosed & how is your weight now you are gluten free ? I haven't lost weight even though the diahorea is chronic. I am very very bloated all the time & I have pins & needles & numbness in my hands & feet. It's really getting me down now.

  • I only lost a little weight before diagnosis but mostly due to constant nausea (and therefore no appetite) not diarrhea. After diagnosis and going gluten free, have much less bloating, nausea and bowels back to normal. Eating gluten free is not always easy but remembering how awful gluten made me feel is good motivation to avoid it at all costs! The hospital where i saw my consultant has a coeliac clinic and they are very supportive also. Hope you feel better soon.

  • Hello poorly one. I used to work as a consultant with a gluten free company. Other people have correctly said that in order to be tested for coeliac disease which involves an endoscopy you need to have been eating a gluten containing diet . coeliac disease is an auto immune disease and can be detected by an initial blood test and then confirmed by an endoscopy which looks at the lining of the bowel. Have a look on the Juvela website which has a load of info on coeliac disease. Good luck.

  • Summer before last I had chronic bowel problems with severe diarrhea for months. Had biopsies and cameras both ways. Diagnosis was a flare of IBS. All prior to lupus diagnosis. Treatment for hemorrhoids stopped the diarrhea quickly.

  • Long before I was diagnosed with Lupus I had IBS. Diarrhea would come with no warning. I worked it out that it was because I had switched to wholemeal bread, ironically because I thought It was more healthy and I had never heard of celiac disease. I am now gluten free, It hasn't cured me but I no longer rush to the toilet.

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