A gastroenterologist nothing wrong so why have i been feeling sick everyday since August. He says its the Lupus. where to go from here Help.

[Lucylou31]

I've been to see a surgical gastroenterologist and he did all the tests CT scan and endoscopy, Nothing physically wrong with me all organs looked normal. Good News for me, Only drawback is i got to just put up with this sickness. I was on hydroxy and steriods and cholestral but came off all these as i believed they were making me sicker than i already was. However he saying i need to see a lupus specialise he maybe able to help. I live in Dover Kent and not sure where the nearest one is ? Can anyone help me and if anyone else suffers from this sickness what are they on medication wise. I was Newly diagnosed Oct just gone and am really struggle to know whats what. Dr say medium positive ANA but i have 11 symtoms out of the list. Any advice would be of help Thanks Lou

[Barnclown]

Hello Lou

I really feel for you

Am no expert, but have been managing upper & lower GI probs all my life (am 58, turns out have had SLE since infancy, but only rediagnosed in uk last year) and maybe our probs have something in common as I also have a lot of sicca symptoms (will not be surprised if sjogrens is diadgnosed too). And for nearly 20 yrs have been coping with trouble swallowing & persistent recurring nausea

Sorry but i can't help you re lupus specialists in your area. But maybe how I manage my GI stuff could in some way be a bit useful to you?

My gp at first had me on pantoprazole for the nausea, but after a few years when that stopped helping and i had a huge flare (now i know it was actually also sle) then my gastroenterologist did all the tests & biopsies, discovered metaplasia of gastric type in gullet (even though I experience virtually no reflux) and had me on low dose nexium for 6 yrs with domperidone+higher dose nexium for a month at a time when persistent nausea flared. Ok this regime did help me settle down gradually, and was probably good, but, like you, I began to feel the meds could be predisposing me to probs too. So I told my gp I wanted to try coming off, although she thought really I should stay on the regime for life. Well, to try to be conscientious, I researched an antiinflammatory diet, read some good self help books on GI stuff, and stopped the meds while doing everything I could to help my GI tract. To my amazement it all seemed to pay off, and for the past 6 year's off those meds, so long as I stay as rested as poss and stick pretty much to the diet & whatever gentle exercise I can manage, I'm doing pretty good: better than before anyway. And when I got On to the hydroxychloroquine (plaquenil 400mg daily) last summer, i felt a bit anxious I might get into nausea etc pattern again, but within a few weeks my GI had settled down fine and has stayed fine even though have been on 5 months of horrible high dose oral antibiotics with rigourous fasting regime all winter. What can I say: I don't imagine my GI probs are over, but so far so good

Also....For what it's worth: Maybe you've tried fresh ginger tea? When my nausea settles in this is what really really always helps me (even when I was on nexium & .domperidone). And I avoid caffeine and big meals. Apparently a condition called gastroparesis causes my sort of probs, and can come with sicca symptoms.

Also, recently, when i was stuggling with the foul tasting antibiotics giving me passing nausea, another forum member suggested I try buccastem buccal tablets - my gp gave me some, but I haven't tried them yet, as I came up with a nonprescription way of resolving that prob.

Sorry to go on and on. Obviously, this subject means a lot to me. Anyway, if my stuff can help you even a bit, that's something. Good luck, take care, and if you feel like keeping in touch I'll be really interested in how you get on!

[Lucylou31 in reply to Barnclown]

hi i was really interested in you reply Thanks. At present im on lansoprazole x 30mg x twice daily. metroclopramide sickness tablets x 4 daily and buscopan 2tabs x 4daily and these are helping, but not taking it completely away. I tried buccastem put that to disolve on gums, well with the other stuff im on it made me high as a kite haha. Too much for me to handle. I would be interested to see what sort of diet you've tried because at present im losing weight and are trying to eat only bland food. Chicken, rice and sometimes just instant noodles as i cant manage much. I was thinking i was maybe allegic or intolerant to some foods but i have change it and it doesnt make a difference. I want to try hydroxychloroquine again as when i have a flare (which seems to be once a month and hormone related as its always a week before my period) because when i have steriods prednisolne my stomach seems to settle for a couple of days or however long im on them. Which makes me think if i get back onto hydroxy in the long run my stomach may clear up. It would be great to stay intouch with someone who actually knows what im talking about, so thank you for reply hope to speak soon Lou

[Lucylou31 in reply to Barnclown]

I have sjogrens (and find swallowing hard sometimes) dry nasal, mouth and eyes also and raynaulds.

[Hidden]

hi lucylou

I too am having very upset digestion, i went to doc over a year ago (before i new i had lupus). with gassy stomach,bloating,constant pain especially under rib cage and felt full up after just eating a mouthful.Of course he said it was just IBS and to stop and slow down and eat very bland food.however after a month of being very good and a loss of weight i went back because i was finding swallowing slow, not difficult but slow and a feeling of lump in throat all the time,so doc put me on lansoprazole for a month to see if it was acid reflux,which like Barnclown said i also had no knowledge of acid in throat and have never really experienced acid reflux.

they did seem to work for a while for the swallowing but not for the cramps and bloating,so once again back to docs but sadly we got side tracked because when he did my bloods they came back positive and he then sent me to rhumy which of course he then diagnosed lupus ,so for a while i forgot about my stomach and just carried on until now.

i have just been back to my docs to ask for more tests but he said that he doesn t think my stomach problems is lupus related but im not so sure as i didint have any problems before(its all so confusing and frustrating)i struggle so much to take any tablets as it makes everything so much worse, any way my doc has agreed that it needs investigating so im booked in for a scan this week and taking more meds to help so at least i know in the end we will find out whats causing all this discomfort.

please don t give up we shouldnt have to suffer there is help out there you might have to push some docs a little bit harder and maybe insisit on more investigation.i have always found my pharmacist very helpful and he has helped me find different meds to try he has so much more time for me than my gp.

sorry couldn t be more help

xx

[Barnclown in reply to Hidden]

hi lucylou

your reply is really helpful & interesting to me too

sorry to go on & on about my version of this, but YES i too for 4 decades now have basically had to eat vvv slowly, and stick to small meals, and felt as if have had a lump deep down in my gullet stopping me swallowing, and swallowing is slow (taking pills a real ordeal).

when i was in my 20s the gp said he thought it was a hiatus hernia and gave me some sort of antacid meds, but really he was shooting in the dark and i just coped by eating little and often, and told my new gps as i moved about that i'd been told i had a possible HH. anyway, this lump & swallowing etc stuff had gradually gotten worse over the years and alongside it i had recurring scratchy hoarse throat and lost voice - sometimes lasting for weeks without any sign of a cold or whatever. it was when i had a really bad flare of all this (inc the persistent nausea etc) in 2003 that my gp sent me to a gastroenterologist who did the endoscopy + biopsy etc and other tests as in my first reply above. even now when it seem like i'm properly diagnosed and managing my GI probs more effectively, i still tend to the gullet lump feeling & the hoarse voice (for me, any cramping and bloating seems gone thanks to the antiinflammation diet)

anyway in 2011 once i got my SLE etc diagnosis and started coming on this forum, & the raynauds/scleroderma healthunlocked forum, i began to find others with these sort of `GI probs. this was how i learned about the lupus predisposition to hoarse voice and also learned about gastroparesis which apparently is what the lump and being stuck with small meals etc is about in my case. my gp and rheumy and lupus nurse + reading books from lupus uk bookshop have all confirmed that this stuff does happen to some of us. the hoarse voice is even referred to as Lupus Voice or something by some specialists

well, i wish you only the best in managing your probs

my feeling it can only be good to share our experience of these things

xo

[Barnclown in reply to Barnclown]

ps woops: sorry, got mixed up: i meant this bit to be a reply to yours pinky56!

[Lucylou31 in reply to Hidden]

Well the gastroentorologist was confident mine was to do with lupus/sjogrens. I have had test CT scan Endoscopy the works and they have found nothing. However back to Sjogrens if we all not making enough saliva and saliva glands wonder whether this has a lot to do with the problems (Just a thought im not medically trained). Thanks for your comment speak soon Lou

[Barnclown in reply to Lucylou31]

Thanks: I have been thinking a lot of this has been down to sicca stuff. I see my rheumy tomorrow & will ask what she thinks. Until my sle diagnosis last year i didn't even know about sjogrens etc. really Really grateful to you for asking your question. Although I did let remembering the trauma of everything I've been through learning to manage this over the decades wind me up a bit - It just feels like all that trouble and effort might maybe have been worth something more if sharing this stuff can be useful to anyone here. Take care

[Anteater]

Hi Lucylou

I think your best bet is to ask your GP to refer to you a Rheumatoligist who specialises in these conditions ...

[Lucylou31 in reply to Anteater]

Thanks anteaster i do too. Paul of the lupus group is going to see if i have a lupus specialist in my area. Cheers Lou

[Amethyst]

Just want to say thank you to Barnclown and Pinky56 for the incredibly useful info. I have been suffering with upper and lower GI problems for a while but the nausea and sickness has become a problem. I am awaiting the results of an endoscopy but don't hold out much hope of a diagnosis as I've had them before. I was wondering if my symptoms were lupus related and now, from your answers, I believe they are. Just knowing that others have this problem helps along with the suggested coping mechanisms (some of which I am already persuing), makes me feel better able to cope. Once again, thank you.

[Barnclown in reply to Amethyst]

Thanks and good luck! For what it's worth, back almost 10 yrs ago when I had my endoscopy for this, my gastroenterologist also had my given 24 hr Moltility & PH test (I think that was what it was called) to check rate of reflux & check my swallowing. Might be worth asking your drs about this? But I do think lucylou is right: much of this is probably due to sicca issues, which I understand is usually what also predispose us to stuff like gastroparesis (slow emptying of stomach contents into upper intestines -which can give persistent nausea, and is treated eith domperidone)

[Lucylou31]

Its hard isnt Amethyst, I told my Dr, if i were to be sick i would get a little break inbetween bouts. But nausea doesnt give you relief its there all the time. I did find when i had a allegic reaction once that antihistimines helped my stomach, although it didnt get rid of it. I used cetizine or Zirtek cause that dont make ya drowsy. Not sure it may help you. Were all different although we have same symptoms im finding im allegic to more and more sickness medication. Hope you feel better soon anything that helps you cope or anyone else i gladly try.

Take care Lou

[mandiee]

ive been like this for a year and half also have oral thrush and bad headaches and cant sleep

[Lisa78]

Ive had Lupus sle for 15 years and been taking Steroids,Azathrioprine & stomch meds as my stomach has been sore for a while due to a reaction to Ibuprofen but 2 yrs ago i started losing alot of weight so saw a specialist who carried out a 2nd endoscopy which showed Coeliac disease & now they suspect Glaucoma.Ur not alone,there r so many symptons & conditions related to Lupus which can b hard.I saw my rheumatologist in April who said i was doing well as Bloods were good but since my lupus has flared up bad.But i didnt feel like i was doing well before as i felt so tired.Hope it works out 4 u.xx