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)

Ask for a referral to a dietician not a nutritionist (that is not a regulated profession anyone can ca themselves it with no training) but a dietician is a regulated profession with certain training etc. They should hopefully be able to do for you.

I was treated for coeliacs at 17 which they were very surprised was negative.

struggled for a few more decades of tests and cameras until I decided to cut out wheat and that solved it.

Have you tried an elimination diet?

Sorry last one from me @JustJane73 your gyne issues may be related to your gut issues (a little bit) - if you're getting an endo excision at the same time at your hysterectomy (which I hope you are) then ask for gyne or colorectal surgery to excise any tissue on your bowels/colon/rectum and bladder as well. Sometimes, people's ovaries are stuck to the bowel wall, or they have adhesions on the bowel from endo, or endometriomas or other cysts stuck to the bowel and the endo tissue (which can produce its own oestrogen and have its own cycle) can make inflammation worse and also cause it's own issues as well. So it won't solve everything but I'd definitely get them to excise and disconnect anything during surgery.

@JustJane73 which digestive enzymes have you tried
90% of them are just scam, nothing is as good as Enzymedica (leave it in the night in a glass of water with food and next day you ll see what happens to the food)

also take methylfolate much better than folate (GPs don’t look into this). If your folate is low very likely your b12 is low too (methylfolate, B6 and b12 go together for methylation )

something to consider is your DAO production might be impacted by this (produced in gut to break down did histamine )… do you have any odd reactions to high histamine foods at all?

finally you can try making your own kefir - dead easy and perfect for digestion

my kid has lots of issues and now following the above and mostly resolved

Yes Mana Dew, it’s not cheap but really good and you can freeze everything

I have often looked at Fibrecalm in the shops. They have three, which one works for you?

I've tried all the prescription antispasmodics available but I find only Colpermin helps. I have tried Naproxen for my endo but it gave me awful diarrhoea.

My endo gynae is planning on excising any endo deposits that he sees during the hysterectomy so I am hoping it helps. I am in a long NHS waiting list, it may be up to a year as I want it to be with him as he is an endo specialist. I do take co-codamol when needed but it constipates me and when I get constipated it makes my upper digestive issues worse (it's a real pain, I tackle one area and another flares!).

I take Ondansetron for the nausea but I have to be careful as again it can trigger my migraines 🙄

I have tried various diets including the low fodmap diet which I am on now but I am looking to try an anti-inflammatory diet which eliminates wheat and gluten so hopefully that may tackle the gut issues and ease the gynae pain too.

My sister with acid related stomach lower pain has found Symprove amazing! Initially first two week’s symptoms got a bit worse but then calmed everything down - worth a try

Following on from my MRI scan from 2 years ago which is how I found out I have endo and adenomyosis, my endo gynae says he is fairly sure its not on my bowel but I do believe that my gut issues are being greatly exacerbated by my gynae problems. I have had the gynae and gut issues since my 20's but in 2022 I had a uterine ablation and because my regular gynae hadn't checked me for endo the procedure allowed the undiagnosed endo to infiltrate my uterus causing the adenomyosis, I believe this additional issue is causing the problems on my bowel, my uterus is now damaged due to the failed ablation and as my uterus is very tilted back I am sure it presses on my lower bowel/rectal area.

My latest US scan shows my left ovary is now stuck to my uterus, it didn't show this on the MRI scan. I personally believe my out of whack peri hormones are also exacerbating issues.

Kind of had enough of being female at this point.

Thank you. I have tried various digestive enzymes but haven't come across that one, I will check it out.

I will look into methyfolate more also, I have just been looking at some B12 FB groups discussing this.

I have looked into the histamine issue in the past but I don't think I have too many reactions to high histamine foods.

I will look into home made kefir too, can it be made using almond milk? I prefer not to consume dairy atm.

I have been experiencing similar issues, worse since meno. I’m now pretty sure it’s sibo. In your shoes I’d want to try a different antibiotic for it, I think another popular choice is amoxicillin. Antibiotics can be hit and miss. I’ve had to take many for a different issue over the years. That one didn’t work doesn’t mean another won’t. I took a lot of an antibiotic that can be used for sibo but isn’t a first line choice (I had it for something else) and this is when I realised it’s probably sibo. So much misery, unable to eat most foods, intolerant to everything and it all cleared up. No pain, no gas, normal bowel movements, it was bliss. There’s also more than anecdotal evidence that berberine and oil of oregano can work. I am waiting to see a gastro who I know treats it seriously as it’s come back, but that period on the long course of antibiotics was a real eye opener.

edited as accidentally missed out a word.

You can try other opiods perhaps tramdol and others and see if one works better. Also have you tried any other NSAIDs like mefenamic acid etc. I'm sorry so little works, I'm like you, one thing triggers another.

HRT once you go into menopause may help as may topical oestrogen. Are you having your ovaries removed as well in the surgery? Just as an aside endo tissue cannot infiltrate the uterus and cause adenomyosis, the adenomyosis issue is when the endometrial tissue is in the muscle of the uterus and not just the lining - thats why you can have diffuse adenomyosis or focal etc. They are different types of tissue in endometriosis and adenomyosis and also they work very differently, as endo is not in the uterus but on all the other organs (different for each person etc). Maybe also try different antiemetics it took me 3 to find one that was better and I gave them time etc, so if onadestorn bothers you too much maybe try another one for a while.

I'm sure you've thought of this but just in case. Do you boil your drinking water? Apparently there's something that upsets some people's stomachs but I can't remember what. Most are ok with it, but for a small percentage it needs boiling.

I'm in the same boat. I can't believe there are no solutions. I'm on a very limited diet and piles of laxatives. Apparently it's ok to discharge people from gastro like that. I might try the Symprove.

Op, have you been tested for bile malabsorption?
My life was made very difficult by the symptons you describe but eventually I was tested and bile malabsorption was the problem.
I take two Cholestagel every day and the symptoms have vanished.

Thank you. I'm going to make an appointment with my GP this week and see if she could prescribe me a different antibiotic. Failing that I will look into the antimicrobial side of things.

I'm sorry you are struggling too, it's no fun is it? I hope you get some relief from it all.after you've seen your gastro, good luck.

Nutritional Therapist here.

Tests can be wrong. I recommend completely cereal/grain and dairy free for at least 12 weeks. No gluten free replacements either because they’re usually full of junk.

You need to give plenty of time for your gut to heal.

Its so annoying having to experiment with so many different drugs isn't it? I have a drawer full of boxes and bottles which will either work sporadically, not at all or will make me feel worse than before, seems such a waste. I haven't tried many painkillers tbh as pain isn't my main issue which I believe is one of the reasons my endometriosis was not picked up earlier enough. I do experience very painful ovulation which will last a full week, to the point it hurts to sit and id bleed, I was always told that was normal for some women!

I have tried many forms of hrt but they all trigger my aura migraines so I've now been advised by the menopause gynae at my hospital to wait until I've had my hysterectomy and then try a low dose oestrogen patch or gel so fingers crossed.

My hospital is a BSGE centre and my gynae is a endometriosis expert, he is convinced the uterine ablation has caused/contributed to my adenomyosis. I have had endless scans over the years and one just before the ablation which showed no signs of adenomyosis at all but since the procedure it shows as clear as day on all ultrasounds, he says he would have never recommended the ablation if I had been his patient at the time. I'm sure he's correct, I never had as many issues as I have now post-ablation and I'm still very annoyed my previous gynae did not even consider endo despite me being a yearly patient of his for 12 years continuously and also knowing my sister has endo too.

I'll definitely ask my GP about trying a different antiemetic drug, thank you.

I do. I boil it first and then filter it. I read that some years ago and have been doing so ever since.

Isn't it so frustrating? I'm sorry you are struggling too. Symprove may be the way forward. I'm going to trial it to I think. Good luck. I hope you find a solution too.

I have, I had the SeCHAT scan a couple of years ago. It came back ok.

Thank you. I really do need to do this again. My friend has just started a similar diet this last week and says she has had hardly any gut irritation which is unusual for her.

Thankfully, I don't need to give up dairy, I've not consumed any for 20 years but I will really struggle with bread, crackers etc, I have tried to give these up so many times over the years and always fall off the wagon. I don't find much joy in most foods tbh but bread.....i just adore bread. Sounds ridiculous but I actually grieve when I have to give it up and really struggle with alternatives.

Yes, uterine ablation can worsen/cause adenomyosis, I should have said. Just that it didn't do it by endo tissue infiltrating the uterus muscular wall. My point was endometrial tissue (different to endometriosis tissue as endometrial tissue is the lining of the uterus - they are similar but not the same). It used to be thought years ago that endometriosis was endometrial tissue on other organs however with better research it's now not believed as they have found out that endometriosis tissue is similar but not the same as endometrial tissue (lining of the uterus, as it works differently, has different properties, can produce its own oestrogen outside of the cycle etc).

I would inquire about other opiods during times you have pain like ovulation. Hopefully, after the hysterectomy, a low dose topical oestrogen won't trigger any migraines.

I recommend for your GP appointment this week maybe book a double appointment, to go through everything more throughly and not miss anything. Make a list of all the points, you could even just show it to her.

@JustJane73 its completely understandable. Bread and wheat products have unfortunately become a staple and many many people, myself included, just cannot tolerate them.

If it makes you feel any better I’ve never seen a client fail to improve their gut health by removing grains and cereals.

Thank you. I'll definitely make that appointment this week 🤞

That's encouraging. I just need to build myself some self control and willpower.