I had one of those dreams when you’re about to take an exam and realise you haven’t studied. Last night it was Biology ‘O’ Level ( yes that dates me). I woke up actually remembering bits of what I studied, but one thing in particular struck me: how the digestive system works, starting off with amylase and saliva in the mouth to break things down.
I’ve been dedicated myself to putting on weight with very unpleasant results and am really back not to try until I get to see a gastro after my ( no malignancy) colonoscopy but “bowel condition”
Back on subject: I’ve googled to check if my very old biology studies still stand. Now, if the digestive process starts in the mouth with salivary glands doing their part, where are we left with the very dry mouth/ side effects of meds/ Sjogrens problems? I know about chewing plenty and taking it slowly, do that, but very much need sips of water as well.
Any thoughts?
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Lupiknits
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Pancreas and liver both have exocrine glands which can be attacked by Sjögren’s just same as mouth and eyes etc. I have chronic pancreatitis and enlarged liver and gastritis due to Sjögren’s
I think you have hit on something there.god that makes perfect sense to me,personally I believe the body all works together.docs seem to think everything is separate.
You've hit the nail on the head there why conventional treatment doesn't work for me. A doctor needs to know about the whole body not just one section!
Yes yes yes Sjögren’s is famous for causing digestive problems! I had a really helpful chat with the woman on BSSA helpline about this day before yesterday and she even explained the science behind the foul taste in my mouth and enzymes, poor quality saliva etc. It’s always a systemic disease just like Lupus, Scleroderma and Vasculitis and 90% get GI symptoms due to dryness and autonomic issues.
Recommend you google BSSA and speak to one of the 2 nice people on their helpline.
I've been like that for at least a year. The number of times people have said you shouldn't drink water whilst eating as it dilutes stomach acid.....
but if I don't drink I am more likely to choke and then digestion won't be an issue.
I regularly now have to stand up from the table and run my fingers up and down my sternum to help food on its way. I cant eat out without a bottle of water handy. Other drinks don't help.
I have only had a couple of choking sessions. Hope they don't increase.
I choked really horribly yesterday when we were out. I had run out of tea so my husband had the grab the nearest drink he could find from a tap for me - Diet Coke 😬🤭
With me its only water that provides any relief. So if I am out I will always have a bottle of water together with whatever other drinks are going. Its when I forget to do that I have a problem. Haven't had to stand up at the table whilst eating out yet, but I can see that coming.
I’ve had the need to stand up problem. In my case, it’s more food getting “stuck” and unable to reach my stomach. Don’t care what anyone says about fizzy drinks, that helps.
Doesn't work for me, only water. There are certain things I don't attempt to eat anymore if I am out, just in case. Meat has to be in really small pieces. Anything with pastry is generally bad idea, thickly sliced bread or dry toasted items are best ignored. If my mouth is a bit dry before eating the choking risk increases.
I think rather than choke I get food stuck so it won’t get into my stomach, and I have to ( sorry) regurgitate it. This is where fizzy water helps. Not cold, because of Raynaud’s, but it seems to make it easier to get it back up. That’s when you realise exactly how bad meds taste.
I eat a very soft diet, and even very small pieces of meat won’t go through. Sadly, I find it easier to eat slowly and on my own. That’s no problem when I was out with my sons because they’d happily scoff what I couldn’t.
I have found that while white bread sticks, seedy toasted bread doesn’t.
Edited to add I sometimes wonder whether the very soft diet with little chewing actually causes problems further down the digestive system.
Have you had a manometry or the new “smart pill” to determine whether your esophagus is working properly? That is very scary to feel like you are choking. I used to have the choking sensation in my throat from ENT reflux — awful. They were able to determine that I had esophageal dysmotility from the manometry.
Thanks again Twitchytoes. I keep having this awful reoccurring yucky taste. Now I know it's a symptom of Sjogrens. How were you diagnosed? I have chronic pancreatitis and pancreatic insufficiency. Thanks
It wasn’t at all for me - four tiny salivary glands removed from inside lower lip by incision under local anaesthetic. Minimally invasive compared to the dental work I’m currently undergoing (root canal replacement later today is much worse!). Five foci lynphoticyte clusters of >50 found and only one 1 cluster has to be found for a positive Sjögren’s diagnosis so you can see mine was extremely definitive.
I have barely even a scar and only some slightly weird sensory wisp went on after for around a month.
Thanks everyone. Very glad for my bad dream suddenly making me realise it. As usual, this forum comes out in force to help x
Edited to add, and sorry to go on about it, but there would have been no Sjogrens answers for me had I not agreed to join the big words study, which is trying to bring a lot of things together. They, so far, check up in all directions to add to the research. Next appt March 🌈
Yes, according to The Lupus Encyclopedia dry mouth can cause gastroesophageal reflux problems causing heartburn and chest pain as well as digestive issues.
Thank you. After a couple of very bad nights and now joints flaring, in places which haven’t before, I’m really glad my next rheumy appt is only 2 weeks off x
Hope the appointment goes well. You may wish to read our blog article on 'pain management' if you haven't done so before: lupusuk.org.uk/pain-managem...
Hi. Footygirl here. How are you? Ive been AWOL a while. I am wondering about similar thing. Can severe dehydration cause gastri/cystitis type symptoms?
Long story. I have seen my new GP five times in three weeks. She diagnosed and treated a bad chest infection. After all this time I am left with a cough, still and wheeze. At the same time I got cystitis urgency and of my back passage ( sorry too much info)
I am cured of infection in chest. When I struggled to cough, this morning, I found that by drinking litres of water, by 10 a m things settled down and symptoms stopped. Today raging urgency. Rang docs to see if same Doc would see me, I had mentioned my Lupus, Sjorgrens, Fibro, Menieres in passing.). She had said she cannot account for still coughing producing phlegm and gave me an inhaler. Tried using it seemed to make things trillion times worse. Nose running like a tap plus rear end stuff.
I began to think, if dehydrated overnight then membranes hyper dry equals irritated.. could it all be connected so lining of lungs irritated, urine tract and bowel?
GP answer was that she was fully booked and could ring me THURSDAY
I always have a drink with me as mouth and eyes always and continously dry/sore.
I think she thinks I am hypochondriac as its outside her experience. Whats new eh guys!
I have contacted answerphone at Kelgren Centre but no response yet. Hoping I may get sent for for clinic which happens tomorrow 🤞🤞🤞🤞🤞.
I know kidneys are “usual” target for Lupus. Im fortunate I have never had kidney involvement. (Diag 2001) Has that changed? Does this sound to any of you like kidney trouble? When hydrated and passing wee it comes out very pale, as you would expect.
I am suffering in the mornings. I have taken the anti cystitis crystals and immodium from Pharmacist who could help me no further.
I will continue to drink one litre every half hour til bed 9-10pm hoping I can pee happily in morning.
Please, does any of this tie in with any of you? Through a process of deduction its all I can suggest to explain my symptoms. Am I REALLY mad, or isthis yet another wrinkle in this wonderful experience we call Lupus/Sjorgres/ autoimmunity.
I shall try posting this on Kidney related community too
Hi there footy! I’m not sure what’s wrong there, but it seems some of us have similar problems. I know the rear end feeling well 😢. My problem is my bowels going from explosive, to bunged, to producing something unflushable. I’m no doctor but I’m positive the very dry mouth creates digestive problems.
My latest is a letter from rheumy as I had a Schirmer test done which showed 0mm advancement in one eye (effing bone dry according to nurse) and 2mm in other. The letter tells me to see my optition if what was prescribed didn’t help. Well, what they had was no more than what I used in my contact lens days. Spoken to optition for suggestions. All somewhat expensive, but hey.
Hi I’m the same mouth so dry can’t eat anything I used to, I’m only 7 stone even consultant was worried, but when you don’t fancy food then it’s so hard getting food down I just seen to give up
Speak to your GP about supplements - my husband had a similar problem and was given the milkshake type supplements they use in hospital. He did gain weight!!
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