I'm still on a mission to try to find something that helps with reflux.
Currently in the middle of another bad flare-up. No idea what's triggered this one as I have a very restricted low-acid diet. No alcohol/caffeine/chocolate/spicy anything for years. Eat tiny meals. No food after 6pm. Nothing before 8am. Use the Acid Watcher diet as a template. Gaviscon Advance when needed etc. Usually all that sort of keeps it dampened down. Or at least livable.
I've also been using IQORO for a while which did seem to be helping. I've also been using xylimelts for the last 18 months which have been life savers. Definitely think the dry mouth courtesy of Sclero and Sjogren's makes the whole thing worse, as we don't have the saliva to wash stuff down and neutralise the acid.
I've been on PPIs before. But they always make me feel rubbish, so still trying to find a different solution. Anyone tried Gut Doctor pills from Boots?
Thanks so much to you all.
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Duck33
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hi there. My (mostly silent) reflux has been kicking off a lot too - particularly since my bowel / stoma surgery in end of June. I take Esomeprazole, 40mg in mornings and 20mg at night and also Famotidine 40mg each morning and a Domperidone. I have gastroparesis and stoma for slow transit so have to be extremely careful about my food intake. I also have my bed head raised on stilts I bought online. None of it is perfect but it definitely helps - although I suck sugar free sweets in day and also xylimelts overnight for Sjogren’s dry mouth. The only thing you’ve described that I struggle with is the stopping eating after 6 and nothing until 8am next morning.
I feel that, during the final 4 hours prior to bed, I’m still a bit active. So I have a hot drink, mostly a decaf coffee/ cocoa substitute at around 7.30-8pm. I can’t drink cows milk so I add a bit of my Ensure Plus as a milk substitute and nibble a tiny bit of rice cake scraped with peanut butter and marmite - just so I don’t get the gnawing rat sensation when I wake in early hours. None of this works 100% or even 70% - but drinking a hot drink with something very light to nibble a few hours or so before you go to sleep might be worth trying?
Oh, thanks so much. The snack thing is definitely something I can think about, thanks. Really miss a warm drink last thing. It's all so frustrating, isn't it. Before we're hit by these conditions, we take for granted being able to eat well. And then suddenly it's all change! Not to worry.
So sorry to hear how challenging your conditions are. You're always so generous with your support for others. Really grateful. Hope you're keeping well, yourself, and that your flare-up of reflux settles soon. Take care.
Ensure is mainly soya based I think. I’m fine with tiny amounts but can’t manage large quantities. Also, not to put too fine a point on it, dairy makes the output other end more smelly - which is not so good with a stoma! Some struggle more with soya based but I’m fine with it. I’ve actually gained some weight recently and only parts of me that’s struggling more are my mouth/ teeth and throat - which seems to be reflux -although I’m not aware of it. I was diagnosed with silent reflux a few years ago by an ENT during a scope. I think it’s more common with Sjogren’s.
Strangely I've never been offered Famotidine. Always a ppi instead of H2 blocker. No idea why. A friend used Ranitidine/Zantac until it was withdrawn, and said it was amazing. If I can't conquer this flare-up, I'll ask doctors about Famotidine. Good to hear it works for you, thanks. That's hopeful.
Hi, I’m not sure I can add anything to this as I’ve failed miserably in giving up a ppi. I’ve been on one for 20 years and I’m afraid I do have osteoporosis. It’s hard to pin point the cause as I’ve lost a lot of weight as I’ve struggled to control SIBO which doesn’t help I’m sure. I did give it up some years ago but got scarring in my oesophagus. I’ve got a Hiatus Hernia, slow transit, and dysmotility in my oesophagus and reflux of course. Initially I was constantly choking without a ppi. In the last two years I’ve had to take esomeprazole instead of omeprazole due to oesophageal spasms. I too have a raised bed head.
I think you are doing very well although it might be worth having an endoscopy just in case you are getting acid scarring. Really interesting about the IQORO as I’ve been considering one of those. The dry mouth is interesting too as I’ve been getting this a lot recently and didn’t realise it could be related. My reflux definitely is worse when I have a bacteria build up of Sibo. I wonder if you find you have to take a ppi a different one might help? It’s such a balance really with this illness and sadly nothing is perfect. Hope you find something here helps from the others so you don’t have to resort to a ppi.
Hello there, thanks for replying. And so sorry to hear about your osteoporosis. My mum has had it for years which is one of the reasons I was worried about PPIs, as I know it's sometimes hereditary, too. And yeah, the SIBO thing is interesting. I had a tooth infection six months ago, and was given antibiotics, and they worked a treat on my gut/reflux issues, which made me think I might have SIBO, too. Do you take antibiotics for it? Or does it just peak and fall by itself? Guess I need to check that out, too. So sorry, you're dealing with all that, and scarring, and an HH. I also have one, found during endoscopy about four years ago... that aside, it was mostly okay apart from gastritis. But the reflux has been gradually getting worse over the years, so maybe due another one. Don't suppose you know how often we're supposed to have one? Every 5 years maybe, or 10? And yeah, you're right, this illness is an awful balance. No treatments are great. But I can definitely recommend the IQORO, and the Xylimelts. When I'm not in a flare-up, the xylimelts help so well at making food go down with no reflux. They're also brilliant at night. Wish they were on prescription. But the IQORO IS now on prescription, so your GP could get you one. Otherwise they cost about 100 pounds. So definitely worth asking the GP for one. Thanks so much again and sorry for asking even more questions!
Thank for replying. Regarding the SIBO, I think I had it for years without much symptoms as I gradually lost weight. I was also dealing with a lot of stress but the Sibo crept up on me. It suddenly got worse after a bereavement, tiring myself out preparing for my daughter’s wedding and a virus tipped the edge. I rapidly lost weight then and on a holiday after the wedding virtually collapsed in the street. It was, unknown to me, autonomic nervous system symptoms. It wasn’t just nausea and diarrhoea but hard to explain as all your strength goes. Starts with pain everywhere and strangely often a lump in your throat feeling. I sort of improved a little when home and went to a nutritionist who organised a SIBO breath test. (I had in the meantime seen a gastro and was on an nhs waiting list for this). It was highly positive. She suggested herbal antibiotics which didn't do a lot for me and various supplements which often upset me. A lot of wasted money on started pills! On my annual rheumatology appointment I actually saw Professor Denton (I’ve been going for years but don’t see him every time) I think he knew something was going on and he suggested two week courses of antibiotics alternating. It still kept coming back and on my zoom appointment with him during the pandemic he suggested Rifaximin which has proved helpful. I still struggling with it although getting more gaps but problem is I have urine retention and anything but Rifaximin irritates this and the Sibo causes UTI’s often so bit of juggle. I still am diagnosed as having UCTD but systemic sclerosis gut issues. I’ve got Raynaud’s (not as bad as many with Systemic Sclerosis) Erythromelalgia, hypermobility and I believe I’ve had POTS attacks which is part of the autonomic nervous system problem. I do eat a very loose fodmap diet and sadly given up wheat. I have dairy with lactase in it and have refused so far to give up my one decent coffee a day! Regarding endoscopy’s i don’t regularly have them but when started having trouble they were done just to eliminate other stuff I think. I’ve had a few over 20 years though! The other thing that apparently helps is something to get your gut moving and they are trying to get me to take metoclopramide but I’m waiting for a good day to try again as got side effects.
Really interesting to hear about the iqoro Xylymelts. Will definitely try!
Thank you so much for your reply. And for sharing everything. You are dealing with so much! Feel bad for grumbling about my reflux. Also, So sorry to hear about all the emotional stress you were under when the SIBO developed. Really sounds like it might have contributed to the SIBO… I’ve been reading a lot about how stress impacts the gut, let alone the autoimmune problems we have, which cause stress in themselves.
I really identify with trying to seek answers for ourselves…From my experience, some doctors don’t seem to know a lot about Sibo. Or much about our conditions in general. So glad you saw Prof Denton. I’m in Wales, and there doesn’t seem to be a lot of specialist knowledge about rare autoimmune conditions. Or joined up action. Having a clinician who can deal with all the different aspects, including the gastro problems, is such a good idea. Here, it feels a bit fragmented, with no specialist centre. Understandable, I know, with the variation and rarity of our conditions.
Really sorry to hear about the UTI situation, especially how it is made worse by the antibiotic that can treat the Sibo. That must be so frustrating. Sometimes I think UTIs in women, especially as we get older, are the Cinderella science, overlooked and forgotten by researchers. So common and debilitating. But so little to fix permanently. You have all my sympathy.
Thanks again for replying. And so sorry for my slow response, Had a tooth out yesterday, so was offline for most of the day. But just wanted to say how grateful I am for the support.
Hope you’re okay and yeah, the IQORO and Xylimelts are definitely worth a go. Best wishes with everything. Take care x
Hello there. All really good advice, thanks. I do try to use lactose free milk. I recently stopped buying it, because it's expensive when you're the only one drinking it in the house, it doesn't seem a good deal . So maybe that's what's caused my flare-up this time. I'm back on it again now. And yeah, I've given up all the nice tasty stuff, too. Definitely still miss drinking coffee and eating chocolate! It's torture smelling my husbands coffee every morning! I'll maybe think about other types of PPI. Omeprazole was the one I get given, and I always feel rotten on it. Thanks again for the advice. Hope you're keeping okay, yourself.
You're having such a tough time. So sorry to hear that. And really grateful you've taken trouble and time to reply when you're going through so much.
Really hope you're okay with it all. And hope your surgery goes really well. Must be daunting. But good to get out of the way soon. And yeah, ppis... maybe not what we want long-term, but, as you say, better that than an ulcer. Totally get that. Glad it's healed. The drugs might not be perfect, but they do help us. I know what you mean about slow eating. I try to do that. Realised just how fast I eat my dinner now. Wolf it down!! Not good!! But definitely something to work on. You take care of yourself. And all the best for the surgery. And thanks again for the lactose thought. I'll check out all the other dairy stuff I eat. Now you mention it, there's probably loads of things I hadn't thought of. Look after yourself.
Just a minor point. At the moment my prescription brands seem to be updated to cheaper brands where I'm getting reflux. I think the capsules and fillers are not as good.
When I stop the meds things improve significantly.
Happened with Mepacrine (which normally is not capsulated but for some reason mine was- I just cut them open and took the yellow mepacrine tablet out in the end , until prescription stated tablet form), Vitamin D (need gelatine capsule not papery one) and now even Omeprazole (now gone papery).
So tomorrow have meeting with clinical pharmacist to see what can be done.
Probably not major factor for others, but throwing this in.
(Dry mouth does not help, even throat and into lungs got dry and acid went into chest. Will explain to clinical pharmacist)
Thanks so much for replying. That’s very interesting about the medications. I’ve noticed the same thing with other pills. Definitely look and feel cheaper. So hard to know whether anything has changed to their effects, because of it. Be interested to hear if you find anything out. And yeah, the dry mouth is so debilitating. I’m convinced it has a big impact on reflux. Thanks again and wishing you all the best.
Duck33, sorry you're going through all of it. At one point my GERD was almost unbearable for me.
A life changer was getting prescribed Pantoprazole (PROTONIX) 40 mg in am before eating. [If it's a tough day or I anticipate GERD happy foods/activity, I take one before dinner as well but this is rare.] I discussed my concerns about long term PPI usage with several docs but was advised that the physical damage from GERD was more concerning to them so I have been on it for years with no noticeable harms.
I have also modified my diet to remove carbonated beverages (except on rare occasions) I fast for 16 hrs so that means I stop eating a good 4 hrs before bed, and I avoid 'acidy' foods. I drink acid reduced coffee every am but don't have it after 3pm, same with certain teas.
Other than that, I have found that there is a certain body weight threshold that is better for me. If I go higher, I feel my GERD starting to act up. If I stay at the ok weight or go below, I'm good. This too has greatly changed my lifestyle as before I would let the lbs creep up until I panicked and lose them again, but now I have this auto sensor that alerts me that it's getting too high and I need to rein it in.
Good luck to you and I wish you the best in your health journey.
Thanks so much for your reply. And your kindness. Really appreciate it. Good to hear that you generally only need to take your medication in the morning. I haven’t heard of pantoprazole. I’ll ask my doctor about trying a different PPI to omeprazole which never seems to make a huge impact on my throat reflux. Thanks also for sharing your lifestyle changes. The weight point is interesting. I think maybe I was a few pounds over my usual weight. But have certainly lost it with this flare up. I do many of the same things as you, and generally I’ve been able to keep it dampened down. Not sure what has caused this flare. But thinking of going back on the PPIs now, to try and take control again. This is such an awful condition. Thanks again for your support. I’m so grateful. And wish you all the very best.
Hi 🍂 PPIs & me don't mix either, I'm unsure why? Gaviscon is only thing I can use which is just so, so hey, so thank you for posting about this,it's really helpful to read some other med ideas to try
My Rhumatoligist said its possibly worsening because I have a Hatial Hernia, has a Hernia been mentioned to you? Just a thought.
The Perimenopause definitely worsened reflux too (maybe I'm in menopause stage now?? I have merina coil so not sure, it could be because im in menopause stage now worsening it? )
Hi there, thanks so much for your message. Yeah, Gaviscon is my saviour, too. And yeah I also have a HH. Found on endoscopy five years ago, so maybe bigger now? The menopause thing is interesting. I, too, queried that. I also thought about going on HRT to see if that would help with the gastro problems, but chickened out in the end, after hearing a talk by a rheumatologist saying she wouldn’t recommend it if you have sclero and Sjögren’s. Urgh! So frustrating. So many brick walls. But definitely brilliant to hear from all the lovely people on here about what works for them. This community is gold! Thanks again for replying. And hope you’re keeping well.
Aahhh HH twin (mine too diagnosed by (traumatic) Endoscopy I'm actually, currently waiting for an abdominal Ultrasound appoint for that has it got any bigger, causing worsening reflux reason, also to check out my ever expanding stomach! I will post results if it is down to HH growth? I don't suffer with sclero (sorry to hear you do) I was added to group so I could join your thread however I do have Behçets Disease & Sjogren's.
Iam on HRT 3+ years (thought I'd risk it due to worsening peri symptoms) I use the Bio Identical (Sandrena) gel & Merena coil, to be honest the Estrogen has really helped with my conditions flare ups, helped with my skin & bits & pieces dryness also helped with achey everything's a bit & my mouth ulcers have calmed right down I dread to think what i would be like without it now?
Maybe it's worth another look into it's benefits? Unfortunately it doesn't seemed to have helped with the GERD tho
Yes very grateful to all the communities/humans on here ☀️ who better to confide & enquire with than the warriors themselves ♡
Ha, HH twins! That made me smile!! Really hope yours hasn’t grown. Fingers crossed.
I reckon a lot of my reflux is caused by the sjorgren’s because we don’t have the saliva to neutralise the acid. Also, thinking lactose free is helpful? One of the kind people on here suggested that, and I think it’s helped a bit already. But reflux is always so up and down, isn’t it.
So sorry to hear about the Behçets Disease. I hadn’t heard of that, so I looked it up. Sounds really challenging. Hope you’re okay.
Thanks so much for the info on the HRT. Yeah, I keep thinking about it, then chickening out. So glad it’s helped with some of your symptoms. That’s great. I’ll maybe have another think about it.
Hope your ultrasound goes well. And really hope the HH is okay. You take care and all the very best.
Hi everyone, I am really sorry that you are having a bad time with your reflux.I am late to the party. but I have been thinking about this.. I have been on Omeprazole for years without any problems as far as I am aware, I take one after breakfast and one late afternoon, which for me works. Until a year ago I was just taking one and Gaviscon when I needed it which became more and more often. In my case I do not have a Hernia but a weak valve at the entrance to the stomach, caused by LSSc, which allows the reflux , especially when lying down or bending over after a meal. The PPIs do reduce the acid production, but we do need acid to digest our food and if you say that you are only having tiny meals, maybe you are not eating enough for the acid to work on. Just a thought . I have found in the past that a warm drink and a simple biscuit can hold off an attack, but I think someone else has suggested that. Also, certain foods such as meats produce acid in the stomach whereas many fruits, even oranges, and vegetables create alkali. There is a Diet called the Hay diet, which is explained in a book called Eating for Health which was very popular at one time . It is explains a way of eating rather than particularly for weight loss, which combines foods which produce either acid or alkali in the stomach, some foods are neutral, so they combine with either so you have either an acid or alkaline meal. I did follow this quite closely at one time, and always have it at the back of mind when thinking about meals but came across the book the other day and it might be worth trying again. It talks a lot about reducing inflamation in Arthritis and all our conditions are of the Arthritis family. Might be worth thinking about , Maybe we could reduce the acid in our stomach by having Alkaline meals. But maybe that is what your Low Acid diet is
Anyway hope you find something that works in the near future
Hi there, thank you so much for getting in touch. Really grateful. And really glad omeprazole is working for you. That’s fantastic. Also, I think your suggestion about a warm drink and plain biscuit is a good settler.
I do remember the Hay diet. Actually, I think it’s very like the one I’ve been following which is an American one called The Acid Watcher Diet by Dr Aviv. Combining acidic foods with alkali ones. It has definitely helped me over the years, though I wonder if it helped too much and I got a little complacent and started having too many of the wrong things. I’d been drinking lactose free milk for a year or so, then recently went back to ordinary milk, as I was feeling okay, so maybe that’s a problem. I’ve also been researching SIBO, after some of the suggestions from other kind people on here, and I do wonder if that’s what has developed gradually with me. I’m on antibiotics this week for a tooth infection and my reflux and gut issues have completely settled down. Think I read that a low fodmap diet can also help SIBO, so I’ll maybe try that, too. Sad to give up wheat again. But maybe worth a go.
Thanks again for all your suggestions. So kind of you. This community really is special.
Hope you continue to stay well. And all my very best.
sorry to hear your suffer from acid reflux and dry mouth too. I don’t use any meds - I did have PPIs once and they made me feel so ill. I’ve started making my own milk kefir which really seems to help settle my stomach - the kefir organisms (bacteria/yeast) digest the lactose in the milk so it’s good for you if you may be sensitive to lactose. For the dry mouth, which is worse at night, I use Salivix spray or pastilles. During the day chewing on liquorice root gets the juices flowing too. Hope that helps? 🙏
Hi Dave, thanks so much for the ideas. Like you, the PPIs make me feel terrible. I've been muddling along for the last few years, trying anything I can to avoid them. I was thinking about Kefir, but thought it would be acidic. Is it better to make yourself, or can shop ones work, too? I'm definitely struggling with milk lactose. Thanks for the other ideas, too. I've tried liquorice root tea, which I liked. Do you drink, that too? Never tried chewing liquorice root. I'll look into that. Do you do any special diet modifications... Do you eat wheat etc? Thanks so much for your advice. So brilliant to hear what works for people. All the best with your running. And take care.
Hi there, glad you find my comments helpful. You can use shop bought kefir (eg Yeo Valley) but I’ve started making my own to experiment with it a bit more. It does get more acidic and slightly fuzzy the longer you ferment it for, which doesn’t seem to cause me any gut problems. Liquorice tea is nice at bedtime, but recently I’ve found Grapetree have the root, which I used to have as a kid. For me it’s an alternative to chewing gum.
I do eat wheat but about 12 yrs ago discovered I was increasingly intolerant to shop bought bread, but that sourdough was ok, so I now bake my own.
Generally I’m finding that fermented foods in all their forms work better for me, as well as mushrooms. I still eat meat but am mostly veggie. I avoid processed food, junk foods and generally cook from scratch using organic ingredients where possible.
Any kind of medication has a side effect, often requiring other medicines to counteract them. Not enough is understood by medics about the importance of nutrition and the impact it has on our health, especially for those of us with autoimmune conditions, where the wrong food can trigger no end of miserable flare ups.
I hope you find things that work for you and that keep your biome healthy. Trying Kefir could be a great help I hope? 🤞
Thanks so much for the information. I'll definitely look into kefir. And Sourdough is very interesting, too. I bake bread sometimes. But haven't tried sourdough. Looks complicated!!! But I enjoy sourdough, so probably worth learning. Like you I'm trying to avoid overly processed food. And I'm vegetarian, too. I often wonder if the rise in autoimmune disease is linked to our food. Though I know genetics probably play a role, too. Anyway, really appreciate your support and the ideas. I'm excited to try them. Thanks again and all the very best.
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So sorry, you're dealing with all that, and scarring, and an HH. I also have one, found during endoscopy about four years ago... that aside, it was mostly okay apart from gastritis. But the reflux has been gradually getting worse over the years, so maybe due another one. Don't suppose you know how often we're supposed to have one? Every 5 years maybe, or 10? And yeah, you're right, this illness is an awful balance. No treatments are great. But I can definitely recommend the IQORO, and the Xylimelts. When I'm not in a flare-up, the xylimelts help so well at making food go down with no reflux. They're also brilliant at night. Wish they were on prescription. But the IQORO IS now on prescription, so your GP could get you one. Otherwise they cost about 100 pounds. So definitely worth asking the GP for one. Thanks so much again and sorry for asking even more questions! 
Hi all..for those who suffer reflux acid and heartburn..i just want to share this..
Removed rapeseed oil from diet and raynauds has gone
Could this be scleroderma? What should I ask from my GP?
Help
Anyone tried Sildenafil?
