Is there anything else I could possibly try to ease my digestive woes (and could it be Coeliac disease all along?)

[JustJane73]

I have suffered from digestive issues for almost 30 years. In my mid 20's I was diagnosed with IBS. My main symptoms back then were lower gut problems such as bloating, gas, diarrhoea (which can come on at any time but most troublesome in the AM) and pain/gurgling etc. Since being in perimenopause for the last 6 years I also experience daily upper issues... gurgling stomach, bloating, acid, often with a raspy throat, cough, pain in stomach (feels gas related as relived with burping) and daily nausea, which I absolutely despise. The upper issues are becoming really troublesome especially the nausea, it feels like an almost permanent morning sickness.

Over these last 6 years I have seen around 6 gastroenterologists (mix of NHS and private), several NHS and private dietitians and I am currently under a neuro-gastroenterologist.

I have endured cameras up and down (two colonscopies in 2019 and 2023 and 1 gastroscope in 2019) and all kinds of scans etc. I have been checked for BAM, microscopic colitis, H pylori etc. All came back as ok although my bloods from last week shows my IgA levels are abnormal (GP wasn't concerned about this at all though google tells me this could be a sign of Coeliac disease?).

A few years back in desperation I spent a lot of money on a comprehensive stool test which showed gut dysbiosis (really not surprised at that as my diet is pretty restrictive), so I then asked my gastro for a SIBO test. This came back as positive for hydrogen sibo. He said he didn't really believe in the tests as they often give false positives, he then left the NHS and I was referred to a different gastro, she is of the same opinion (my neuo-gastro is also in agreement) but she gave me the antibiotics anyhow but they made me feel worse.

I will add that I struggle with a lot of anxiety and stress. I have never handled stress well and have struggled with my mental health since I was a small child (I was diagnosed with adhd this year). Along with helping to care for my mum who is in the advanced stages of Alzheimer's (last month has been hell as she fractured her neck and the hospital stay has worsened her dementia), 6 years into perimenopause and constantly worrying about my gut symptoms with the fear of needing the loo or being sick has greatly reduced my quality of life. It's a horrible vicious cycle. I know my state of high anxiety is not helping my gut issues and that does play a part but I don't think it's 100% that because for 2-3 days per month, around day 8-10 of my cycle I have almost completely symptom free days, I do nothing differently on those days, my stress levels are still as high, I eat virtually the same foods every day so it can't be related to that. I am pretty sure my hormones are exacerbating things too. I literally feel like a different person on those 2-3 days per month, it's insane.

I have tried endless gut directed hypnotherapy (both apps and face to face) I am currently again trying hypnotherapy via the neuro-gastroenterologist, it's nice and relaxing but it never fixes the gut issues. I have had many cbt sessions. I follow a low fodmap diet and avoid all my known triggers, I only drink water. I walk my dog every day and do stretch/yoga moves every evening. I don't drink, smoke or take any drugs. I have tried various digestive enzymes and probiotics. I take imodium when things are bad, I take peppermint capsules every day, windeze type meds when needed. I have tried Rifaximin for the potential SIBO but they made things worse. I have tried various SSRI's for the anxiety but they made my gut issues worse. Amitriptyline also but they left me confused which scared me as they have a potential to cause dementia so I came off those. I have tried HRT but I suffer from hormonal aura migraines and they became worse on HRT.

I really don't know what else to try and I am getting desperate.

I am willing to even try alternative things. Can anyone recommend any natural supplements? My folate is only 3, I often wonder if that could be an issue (although GP isn't concerned about my folate levels at all). I have heard acupuncture could help but at £50-£60 per session I would really need for it to really help as I had to give up work last year due to my issues and helping to care for my mum, I really can't afford to throw too much money at this anymore.

Sorry, that really is a long drawn out ramble but I am getting so desperate, everything is really getting me down and all I want to do these days is sleep. Never thought my mid 40's and 50's would have felt so shitty (I felt great at 40, wish I could go back to those days)

I sympathise as have had similar, though admittedly not as extensive, symptoms.. I started drinking symprove a year ago & together with hrt most of my digestive issues have cleared up. It’s not cheap but I strongly recommend it.

Have you tried just a gluten free diet? Has Coeliac been ruled out? My ferritin and folate levels were very low, gluten free put them right after diagnosis.

Very similar with SIBO diagnosis.

if it flares I get straight on strong dose pro-biotics, recommended by neurogastro. - Biokult.

my mum swears by Lactichoc which is French but you can buy it online: I haven’t tried it yet.

also what really helps it is Efracea which is a low dose anti-biotic used to treat rosacea and perioral dematitis. I buy it privately online. It is also used for SIBO.

have you been tested for mast cell activation disorder and hypermobility? I have EDS and MCAS and both play havoc with my gut.

HRT might help too. Urogynae said my hysterectomy would help with inflammation related to cycle which it appears to.

definitely try gluten & dairy free. I’m intolerant possibly celiac and get sick if I have more than a bit of diary e.g ice cream / cheeses.

when I was really sick I spent a year no gluten / dairy / sugar / alcohol. Stuck to fish / chicken / greens / berries / pots and felt so much better but it was hard work.

Also stress was one of the biggest triggers by far, which is frustrating

I was diagnosed coeliac about 15 years ago with lots of gut symptoms and a history of fractures. What prompted me to get tested was that I became lactose intolerant. It might be worth checking if being lactose free addresses some of your symptoms. It sometimes goes hand in hand with being coeliac so potentially worth investigating. I kept a food diary to work it out, as I was still ill after going gluten free post coeliac diagnosis.

Thanks, I have looked into Symprove before but was out off by the price but if it helped I'd willing invest in it as long as it didn't make things worse, that's my fear with probiotics as I've had some very mixed results with others.

I have had several blood tests and a gastroscope biopsy to rule out Coeliac over the years, they all returned negative. I do feel better going gluten free but not 100% tbh, still have quite a few issues.

My ferritin was at 3 for over 10 years until I had a uterine ablation and I fusions back in 2022. I also suffer with gynae issues which was the reason for the low ferritin.

Thank you. I did try biokult many years ago, I need to give those another try, I've heard so many good things about it.

I've been dairy free for 20 years, dairy definitely does not agree with me. I'm currently low fodmap and avoid all my known triggers. I really need to give up gluten again but find all the gluten free breads awful, I've tried them all and just cannot get a taste for them but I love bread so much. It's one of my only joys in life tbh but I know I need to go gf, I really do.

I follow a lot of people on sm with MCAS and I do have similar issues, although I've never experienced hives. I'm also sure I have joint hyper mobility, at the very least, if not EDS. I score 8 on the Beighton scale but every GP I've mentioned this to will just tell me everyone is a bit bendy and I shouldn't think too much about it. But I'm certain my grandad had it and my mum almost definitely has it. My son also suffers with knee subluxations.

I have tried several forms of hrt but they all triggered my aura migraines which are hormonally driven as I experience them on the 3rd day of each period and in pregnancy too. I also have adenomyosis and endometriosis and hrt makes the pain worse. I am awaiting a hysterectomy for the adenomyosis and have been told by my endo gynae my gut issues are not related.

That's interesting. I'm definitely lactose intolerant. I gave it up 20 years ago as it would send me to the loo within an hour or two of consuming.

I might have a discount I can share with you, I’ll check. It’s worth a try. I don’t take any other supplements as not really a believer in pills & potions but the science on this makes sense to me. A healthy
gut biome is central to everything. Also are you on hrt? Peri-meno causes havoc with digestion which if it’s already your weak area, will only be made worse at this stage of life.

Definitely give up gluten. I actually find the GF breads give me symptoms from all the preservatives.

there is. GF bakery in Battersea that delivers and it’s divine.

Might be worth you seeing someone like Dr Kate Barnes who is a private GP with EDS specialism, she might point you in the right direction. It’s very hard to get a diagnosis and often it happens in menopause because symptoms increase from hormonal decline.

i used to get aura migraines too on the pill. Now I’ve had hysterectomy I can just have estrogen which makes a big difference. I bet thinks improve when you have a hysterectomy.

I think you should be referred to rheumatology, because i reckon you are probably close to the mark with hEds

How desperate are you? You could try an extreme elimination diet of just beef and salt and see if that helps.
If you are intrigued take a look at Dr Nick Norwitz on YouTube, he resolved his own IBD using diet. It's a worth a look.

My sympathies @JustJane73you describe similar to my experiences. I don’t know what the answer is.

My GP just says no funding for finding out anything, choose a symptom and they’ll treat it. Colonoscopy says IBS, anecdotally I’ve found cutting out gluten helps; endo diagnosis before the computer records go back and as I’ve changed areas they won’t take my word for this so won’t refer me to an endo specialist. Can’t be referred to a nutritionist as not possible. In the meantime constant worry as to whether it will be a day my stomach is upset. Suspect also have neurodiversity of some kind, undiagnosed, perimeno has sent me sideways.

I think if you had coeliac disease it likely would have been diagnosed by now. The only that might be masking the tests is that you have to be eating a decent amount of gluten for the tests to be accurate. If you already are low gluten then it might not be noticeable in blood tests. Having said that the way to manage coeliac disease is a strict gf diet with no cross contamination or "may contains" so if you went strictly gf and felt a lot better after a couple of months the tests probably aren't worth worrying about.

If you feel fine on certain days of the monthly cycle then maybe the hysterectomy will be a game changer if it puts you into menopause ?

That would be very helpful, thank you.

I have tried various types of HRT but they exacerbated my aura migraines which are hormonally driven, I also have endometriosis and adenomyosis and the HRT made the pain worse. I am on a waiting list for a hysterectomy so am hoping I can try a low dose of oestrogen once my uterus is out.

Thank you, I will try the gf bakery. I have just googled, is it called Manna Dew?

I will check out Dr Barnes too.

Fingers crossed things may improve post hysterectomy.

I have considered going carnivore for a short while to see if I can 're-set' things, I know several people with SIBO who have tried that approach and it's helped. Not sure if I have the funds or the self control to live off meat only but I may give it a try.

I'm sorry you are going through similar. It's awful coming up against brick walls all the time, isn't it? I really wish I had an answer for you, it's not fun.

I have always eaten plenty of gluten before my tests as I know being gf at these times can give false negatives so hopefully the negative results I have received have been correct, I was just concerned as to why my IgA bloods were low but my GP didn't seem to know why. She says she is going to ask my gastro so I have been continuing with the gluten in case my gastro wanted to re-test me.

As much as I am terrified to have the op I am hoping this may be the case. I live in hope.

I have had similar issues for years never seen Dr's about it. I have found fibrecalm very helpful.

This may be no help at all, but your life does sound very stressful and I wonder if some intense exercise and more support for your anxiety would help.

Dr Claire Weekes is amazing for anxiety.

Exercise relieves stress and takes your mind off everything else for a while, and helps with better sleep too. I think this is getting me through menopause - and I’m on HRT!

I drink huge quantities of water which definitely helps my digestive issues and also have water with electrolytes to make sure I don’t over hydrate. This seems to help my digestion work properly. If I get the slightest bit dehydrated, am stressed or don’t get enough exercise, I feel terrible with severe (like can’t focus on anything else) lower abdominal pain. When stressed I sometimes literally feel it happening - it’s like the anxiety symptoms have moved directly into my gut.

The other thing that helps is breathing exercises that I use the Nerva app for. I found them better than the hypnosis itself. And meditation, but more as a daily thing than during an attack.

Maybe try antispasmodic drugs and anti inflammatory medication/NSAIDs as they can help - there are many but Naproxen may help. Hopefully after your hysterectomy the low dose oestrogen helps. Are you getting excision surgery for endo as well @JustJane73 ? When is your surgery? Also look into opiods if it's painful as such even a low dose Co-codamol could help.

I'd also get antiemetics (anti sickness and nauesa meds) which can help with the reflux and nauesa from your upper issues. Your GP should be able to prescibe all of the above.