Does anyone have bowel problems ?

[tremarel]

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.

[MaryF]

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. bmj.com/content/345/bmj.e7982 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

[tremarel in reply to MaryF]

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 ?

[MaryF in reply to tremarel]

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

[tremarel in reply to MaryF]

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

[MaryF in reply to tremarel]

All the best to you. Mary F xx

[crankyme]

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.

[tremarel]

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

[tremarel]

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.

[Elle-26]

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-

[Bebe76]

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.

[tremarel in reply to Bebe76]

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.

[Bebe76 in reply to tremarel]

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.

[Fitchick1 in reply to tremarel]

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.

[Bonnie39]

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.

[Melinda]

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.

[calla]

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.

[tremarel in reply to calla]

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