SIBO - anyone experienced?

[Twoanklebiters]

I have had an upset tummy for years. Every test under the sun I’ve had it, all ‘normal’. (Low ferritin for years however). BUT I’ve never had a SIBO test. My hair is falling out like crazy and I think it’s time I got SIBO investigated as this seemed to come on overnight and has never gone away. I’ve been told it’s IBS but it doesn’t feel right.

Is there anyone in the UK (south east ideally) that has been diagnosed? What were your symptoms? And have you managed it?

Thanks so much in advance.

I had to look to make sure I hadn’t started this thread!
I have the same experience as you.
Have had an upset/super sensitive digestive system for years and years.
I have had endless tests, been prodded and poked, tubes up and down but nothing detected.
Also have very low iron and ferritin was 3 at the beginning of the year (had to have infusions). I also have hair loss etc.
I have often wondered if it is SIBO but the gastroenterologists I’ve seen just looks at my like I am crazy.
My digestive system never shuts up, it’s constantly growling and gurgling, I have nausea, indigestion, I bloat most evenings like I am 7 months pregnant, I have gas up and down all the time. I get loose/soft stool and often have urgency.
I also think I have low stomach acid which I’ve read is connected to SIBO.
As I haven’t gotten anywhere with the gastroenterologist I am thinking of doing the test via Healthpath, I have contacted several nutritionists/naturopaths but their fees are so expensive and I’ve wasted so much money over the years, trying to get help, I am worried about wasting more.
There are some good Facebook SIBO support groups if you haven’t already tried them.
Sorry I can’t offer any advice on SIBO (let’s hope someone comes on with some suggestions 🤞) but I feel your pain regarding the symptoms.

Oh god I’m so pleased it’s not just me! The gastro who has done all my tests I think assumes I’m bonkers. It’s all a bit eye rolly, it’s stress etc and I know it’s not!
This is really interesting you mention low stomach acid. I have literally just been reading about it end of last week and thinking this could be it. I’ve felt this hole before of course, that someone will finally find out what this is, but I haven’t been tested for this. I have persuaded my gp to refer me privately to be tested for SIBO and low stomach acid and am
wuietly hopeful one of these will hold the key. I was taking PPIs for several years (albeit a long time ago) and then have had a few much shorter periods more recently. So it wouldn’t be crazy to be that.

SIBO seems to be Pooh poohed by some. Which seems mad as I’ve read as many as 80% of IBS cases are actually likely to be SIBO. I do think there are relatively cheap home tests you can do. Have you looked into that? I just feel desperate now. The hair loss has tipped me over the edge with it. It’s all patchy around my hairline, thinning all over and looks dreadful. Raising my ferritin doesn’t seem to be helping so far and it’s been almost 10 months of supplements.

I really feel for you. For me it’s been like banging my head against a wall and feeling slightly gaslit at every appointment. Even my hair loss was put down to stress.

A friend of a friend has mentioned a low histamine diet. As yet I haven’t read anything about it beyond that, but she’s an ex-medic and so I ought to look into it really. Have a look as well and see what you think. I did briefly work with a dietician and no changes affected anything but you never know.

I think I’ll try anything at this stage!!

(I’ve felt this HOPE before, not HOLE) 😆😆😆

My son has been very unwell for a number of years, constant, debilitating diarrhoea, cramps, weight loss, headache and vertigo. We’ve seen doctors both privately and through the nhs and always get told he has ibs. He’s followed the fodmap diet and removed all obvious allergens without much success. Eventually and through luck alone we were put in contact with a fantastic nutritionist who truly understands gut bacteria and how and why we can become so unwell when the gut biomene isn’t functioning as it should. She obviously couldn’t test for SIBO but she thought that was what was causing the problems.
I’m not qualified in anyway to tell you what to do but but it worked for us - I would highly recommend removing all sugars and all yeast from your diet if you suspect SIBO as it’s literally food for bad bacteria. If you want to try it Google yeast free diets. Yeast is in a huge amount of foods. We also use a supplement called ADP. It’s basically oil of oregano. It attaches itself to the bad bacteria and removes it from your gut in a natural way. There are antibiotics available for SIBO but as my son couldn’t tolerate anymore antibiotics (long term over use destroyed his good gut bacteria) we choose this option. He’s still has quite plain diet which we will experiment with over the holidays but oh my god he’s a different child to the skinny exhausted walking skeleton he was this time last year!! He’s put weight on and goes to school (his attendance was 60%), he’s really thriving. I do not know what I would have done without the support of a nutritionist. Please don’t take what your told by gastro/allergy ‘specialist’ as gospel, the nhs is seriously behind when it comes to its understanding of gut health. Ask for SIBO breath test. Don’t take no for an answer! if it is SIBO hopefully you can tolerate the antibiotics if not look majorly into diet. There’s a new book out, I can’t remember the author but the title is something like ‘eat more, live longer’ and it focuses on eating well for good gut health. We’ve just started using the principles of it, eat a huge range of different fruit/veg/lentils/nuts etc to heal the gut. Peptide bismol seemed to calm his gut down and I add ginger and turmeric to as much of his food as I can get away with as they are soothing for the gut.
Im waffling now, I don’t know if any of this will help you, it’s been a long journey but we’re getting somewhere!! There will be a solution for you too.

@Twoanklebiters Following with interest as I have had digestive issues for the last 3 years and have also wondered if this could be the cause. I would really appreciate if you could report back on your tests for SIBO and low stomach acid, I didn't realise you could be referred privately for these. I wish you luck in resolving your issues.

twoanklebiters the Healthpath SIBO test is about £150, it’s a bit pricey for me but I’m going to try it. Although, I have a gastro follow up next week so will mention it to him again and see what he says, see if he could refer me somewhere.
I have looked into the low histamine thing too and can tick lots of boxes for those symptoms and also mast cell activation syndrome and what with those and the idea that I could have SIBO as well it’s no wonder the doctors all eye roll me but seriously I just want to feel well, gut issues are just awful. Sadly, raising my ferritin levels hasn’t helped my thinning hair, I have resorted to wearing a hair topper.
Re the low stomach acid thing have you done the bicarb test? It’s not hugely scientific but basically you drink bicarb mixed in a little water first thing in the morning, before food or drink. Good amounts of stomach acid should have you burping within 3 minutes, after 5 mins if there is nothing going on they says it’s an indicator of low stomach acid? You do it 5 days in a row, I didn’t burp once!

Whydidyouask that’s really encouraging to hear your ds is getting better, there is nothing worse than a poorly functioning digestive system but even worse when you are so young. How did he get on with the oil of oregano? I’ve read it’s quite hard core and many people give up on it, I have thought of trying it but would rather work with someone , I am desperate to find a decent functional practitioner who knows their stuff where gut issues are concerned. I was duped earlier this year. I paid £200 to a so-called gut health nutritionist only for her to tell me I would ‘cure’ all my gut problems within a month by eating 2 boiled eggs for breakfast then consuming 10 vegetables per day in the form of soups and stews. Nothing else, just that and I’d be cured!

He’s had no problems at all with the oil of oregano. At his worst he was taking 9 tablets a day along with other supplements (max strength vit D, cod liver oil, L-glutamine).
we were recommended a blood test company by a friend, to rule out allergies and within this cost you receive a free 30 mixture consultation with a nutritionist who agreed to deal with us separately because he was so unwell. The company was called Smart blood, they’re considerably cheaper than some of the others available. I think I paid around £100 initially then £80 ish for each session with the nutritionist. It got very expensive over time but so worth it.

Thank you for that. I will have a look at their website. Good to know he was fine on the oil of oregano.

Following with interest as my digestive system isn't great either. I tried oil of oregano for reflux and digestive issues but it was awful, made it ten times worse. I was really disappointed. I tried cbd as well and that also made it worse. I can't tolerate oils of anything apparently! I have an extremely sensitive stomach after years of antibiotics for problematic uti's and infected wisdom teeth. I can't tolerate any broad spectrum antibiotics any more. They absolutely ruin my gut. I have low ferritin and can't tolerate prescription iron supplements so I'm stuck with over the counter stuff. I get ill so often that it's affecting my mental health. I do believe the gut is a major issue but I don't know where to start with healing it as I'm so sensitive to literally everything. Even probiotics don't seem to agree with me. 🙁

CreatingHavoc how low is your ferritin? Mine fell to 3 this year, my gp is fully aware of my ongoing digestive issues yet still tried to palm me off with iron supplements fully aware that they wreck my guts, in the end I felt so awful I pushed for an iron infusion. If they haven’t already, don’t let yours get this low, it made me feel awful.
If you have SIBO probiotics will make your symptoms worse.
The cedars-Sinai hospital in the USA has a SIBO specialist, Dr Mark Pimentel, he has lots of YouTube videos about SIBO, they are very insightful.

My ferritin was 9, then 11, then 15. Now it's 15 they won't even prescribe me supplements even if I wanted them because apparently over 11 is 'normal'. I think if I wanted an infusion I'd have to pay privately.
I suspect I do have sibo just because of the ridiculous amount of antibiotics I've been given over the years. I discovered my NHS dentist was giving me them when I didn't need them so I ended up going private for my dental treatment as well. I am thankful for the NHS but sometimes I despair of the lack of care and knowledge that seems to be entrenched in it.

That's interesting, could you explain why probiotics would make it worse?

I'm 90% sure I have SIBO. I have diarrhea every day of my life, except when I'm on antibiotics and I feel completely normal, until a couple of days after stopping.
So I asked my gp to just prescribe a low dose of antibiotics, as is the treatment for SIBO, she said she wasn't allowed and it could only be done by Gastro. Soo I have an appointment with Gastro.. next March... 🤦🏻‍♀️

tedioususername I’m a member of several SIBO Facebook groups, from the info on those my understanding is that when the small intestines are already overloaded with bacteria, which obviously shouldn’t be there, probiotics in general make things worse although they say spore based probiotics are the best used for SIBO but I think it’s advised once you’ve treated it with the appropriate medication.

Thanks @JustlookingNotbuying

Can anyone explain to me also why some SIBO diets seem to say high fiber low fodmap is the ideal, while others say low fiber is essential?! There seems to be complete disagreement on certain foods such as potatoes between the different diet options, all saying they're the best for sibo?

I’m struggling and know this thread was some time ago I’m seeing a functional practitioner, high fiver is killing me and I’m back with the bloat again ! Today I get a CT scan !!! I’m always feel fearful it’s something really sinister