Gerd / throat issues but no indigestion

[Thereisalight]

When my first symptoms a the UCTD appeared, so did this feeling on my throat which has got progressively worse. I have tried PPIs without much luck. I was told i had h pylori for which i was treated but symptoms seem to persist. Initially i just felt discomfort on my throat. Thougjt it was a thyroid issue but now i basically feel like there is something in my throat , like if food comes back up but just stays there. I also get post nasal drip, this foamy phlegm which just appears in my mouth randomly. I'm having an endoscopy in a couple of weeks privately as GPs all just want to give me PPIs for life and that's it. Hoping the endoscopy helps in identifying what treatment i need etc but i can't help thinking this is related to the UCTD as i never had issues before and by reading posts here many of you also suffer with this. I have noticed it gets worse with tiredness but with two small children that hate sleep it's hard to rest!

What advice do you have to improve this? Diet, drugs, lifestyle? I have cut out caffeine and most alcholol, not that i had much of either in recent years anyway.

Hope you have a nice Sunday!

[Hidden]

Yes I have this too although I do get the indigestion and heartburn occasionally too. I see an ENT for first time later this week for confirmation but I think I have a post nasal drip and sinus issues. I did have a gastroscope a few years ago which confirmed reflux but that was all. I have primary Sjögren's and my whole system is affected from brain to GI to Sicca to kidneys to joints, nerves, skin and tendons. I also have Raynauds. Never been diagnosed with UCTD but was first misdiagnosed with RA.

I take Ranitidine 150mg twice daily and occasional Lansoperazole. The Ranitidine has really helped in the past and I also take OTC antihistamines most nights - but I think the post nasal drip is my big problem probably and might be causing sleep apnea. I will post after my ENT consultation 🤞🏽In my case it's all Sjögren's dryness related I suspect.

[Thereisalight in reply to Hidden]

Thanks for your quick reply. I saw an ENT consultant who reckoned it was a gastro issue especially with the h pylori so i have not go back to him yet. He said if reflux treatment did not work he would also look into my sinuses as post nasal drip might be caused by that too. I just thought i would best resolve and explore the most likely issue fully. Let me know how you get on!

[Thereisalight in reply to Hidden]

Hi twitchytoes. Just seen your post about you ENT visit. It sounds so uplifting! I was worried about getting cancer at some point too so it's good to hear he is optimistic about it. I dont have confirmed sjorgens, just UCTD but with positive anti-Ro which points to sjorgens too. I wonder if it's a similar thing we both have in our throats! Your post was quite explanatory but just thought i'd double check what he said. Can dryness cause all these issues?? IHow does that work? My throat has always got very prickly during colds leading to coughing fits. It's actually has been worse lately as i even vomit or bring food back up ocasioanally in a bad episode! I prob could do with drinking more (does yoir ENT consultant or rheumy say drinking more helps?) and i might try to get a humifier to see if it helps having read your post. Hoping the gastro appt gives me something for any reflux i might have! I might go back to ENT consultant to check my sinuses with a CT scan. Having this type of disease is so depresing. It's like your body is built wrong and nothing works plus new symptoms appear all the time or get worse. There is no let down. I get so down ablut it sometimes but noone cares as I look healthy and i'm surrounded by people who think positive thinking solves all problems. Not saying it doesn't help but it def doesn't cure you.

[Hidden in reply to Thereisalight]

Hi Thereisalight. I probably should have quizzed him more but it was an emergency appointment - so not really appropriate to ask him about a rheumatic disease I felt - he is just an ENT surgeon not a rheumatologist at the end of the day. I accept that the Sjogren's (and my SSA & B antibodies were negative unlike yours!) is attacking my saliva production quite badly just now and if you can't produce enough saliva and if the quality of saliva is poor - then inevitably this will affect our throat and our ability to swallow.

But I'm me and I am prescribed reflux meds and have been for a few years now. So this chap was just reassuring me that I could exclude reflux from the picture. And having looked in my mouth with a torch he could see my throat and how dry it always is so it's a fairly simple conclusion to reach that it's dry for this reason I guess. I asked about post nasal drip but he felt my mucous production is very low so this wasn't such a likely candidate. He's getting my passages looked at because of my numbness around left side of face and mouth, but thinks it's more likely to be the small fibre neuropathy I have elsewhere.

For me the very worst symptom is and has always been, an awful taste. I can put up with everything else but this is the the one symptom that makes me most miserable. I assume that the sore throat and horrible sour taste go hand in hand with having dry mouth. I'm beyond looking for other reasons for me since this explanation of Sjögren's makes complete sense. If I felt it could be other I'd get it checked out by gastroscope rather than risk silent reflux or presume it was all down to Sjogren's. But this guy clearly knows his stuff!

As someone who always requires clinical evidence that I can see or be shown for any diagnosis - I find it useful to get each thing ticked off or I will worry that they are just fobbing me off and working on presumptions.

I was misdiagnosed with RA once not so long ago so I'm extra vigilant now and find it really helpful when my medics support this - and really frustrating when they don't!

Please do get the reflux possibility checked out asap and make sure you're appropriately treated if no doctor offers you stomach protectors such as Ranitidine (which is sold over the counter) or PPIs. Take care and keep looking for answers if you feel more going on than your diagnosed UCTD accounts for.

[Fennella02]

en.m.wikipedia.org/wiki/Lar...

This link may be of interest. LPR is not so widely documented as GERD but may acount for your symptoms x

[Thereisalight in reply to Fennella02]

Thanks! I'm aware and yes i think that's what i have! Just was not sure if everyone would as not so common.

[LuckyJC]

I had this and was diagnosed with a rare type of delayed-onset food allergy called eosinophilic oesophagitis - please ask your doctors to look for this via biopsy when they do the endoscopy because it's rare and a lot of doctors have never seen it or heard of it, but your symptoms sound very similar to mine! The best treatment is a food elimination diet to find out what you're allergic to

[Thereisalight in reply to LuckyJC]

Thank luckyjc! Will ask about that!

[Bellacat2011]

I have just come out of hospital after a weeks stay. I after feeling like I had something stuck in my throat I stared vomiting blood. To cut a long story short after a endoscopy they found I had a 16cm tear from the top to the bottom of my esphogaus, I was very sick. They believe it could have been caused by my high does steroids that was up'ed from my normal 30mg to 60mg after a chest infection. And also a course of antibiotics called doxycycline that is known for irratating they lying of the esphogaus. Iv been on a soft diet now for 3 weeks and it's healing slowly. Please don't ignore these symptoms xxx

[Thereisalight in reply to Bellacat2011]

Oh my that sounds terrible. Glad you are on the mend and hope you get a full recovery! I think it's unlikely it's that (fingers crossed) as i'm not on any medication. But don't worry i'm not one to ignore symptoms. Despite not having a very active disease (for the moment) i feel i'm constantly in and out of the doctor's office! My GPs probably think think i'm a hypocondriac and need therapy 😂 hopefully the endoscopy will give me some answers. I have been bugging dictors since January about this. Have been to ENT and now Gastro privately as i dont like to mess about with this!

[Sadiemay in reply to Thereisalight]

I have also had had throat issues for about 5yrs. I've been told it is directly related to mixed connective tissue disease. I've also been told that it could also be silent gets. I, Most days cannot swallow solid foods, I feel as if I have to clear my throat but can't. I also get aspiration pneumonia often and my voice is not the same. I just get so depressed with every time I turn around it's something new. Hopefully when my dr. does another endoscopy he will dilate my esophagus. Something has got to give I'm about ready to throw in the towel.

[Thereisalight in reply to Sadiemay]

Hey I have not been in here for a while. Been all consumed with all random things happening to me like throat issues, buttocks pain (now resolved) etc and family life with little ones. Sorry for the lack of response. Still having issues with my throat. I found dairy was an issue and the phlegm seemed to stop mostly. Ph studies were negative so they said it was not hard.But since january my throat is always irritated and I keep coughing and recently my voice has changed. Seen new ENT in Spain who says it's chronic granular pharyngitis due to silent reflux.... on high meds and trying to eat smaller portions and super bland food. Not huge improvement yet and it's bringing me down. Seeing ENT in uk soon so hoping for more answers. I had seen one gastro doc who said I might have reflux but since not acid tests did not pick it up but that since it was not acid it would not hurt me and now I'm like this! I wish our care was more joined up so all these symptoms were not treated in isolation and all tests were done at the time to cover everything. I had to fight for each test!

"I just get so depressed with every time I turn around it's something new." This resonates do much with me. How you are going thru a better patch. Sorry for the very overdue reply.

[miccika1]

Does it get worse when you lay down? Especially on the side? Any issues sleeping?

[Thereisalight]

Sorry I never picked up this msg. No. It seems to happen at any times. Food and drink seems to be a trigger mostly. Unless it's quantities, I am already eat a very bland diet and no coffee/tea alcohol pr soft drinks. So not sure how else to deal with this. And it suspiciously all started when I was diagnosed with uctd...after the birth of my 2nd kid.

[Buckley123 in reply to Thereisalight]

I have throat issues and they believe I have uctd also feels like something in my throat it’s not bad now but it’s really annoying xxx