Has anyone suffered from hydrogen SIBO and managed to get rid of it?

[MonsterMunchforbreakfast]

Without any major side effects or feeling worse than before?

I have suffered from digestive issues for decades. I had it under control to a degree by following the low fodmap diet, avoiding my trigger foods and with gut directed hypnotherapy.

However, over the last 6 or 7 years things started to get worse. I started experiencing lots of upper digestive issues as well as the IBS ones. I bloat, burp A LOT, experience lots of gurgling and farting and generally feel as though I have swallowed the contents of a balloon. It is very uncomfortable and often leads to unpredictable bowel habits which is embarrassing and inconvenient.

I have had endless gastro tests (colonscopies, coeliac bisopsies via gastroscopes, scans, Bile acid malabsorption scans etc), all clear. After a private comprehensive stool test showed high gut dysbiosis I asked my gastroenterologist if I could be tested for SIBO. This came back as positive. However, my gastro says she doesn't really rely on or has much faith in the breath tests as they are unreliable and can often give false positives and I would more than likely have some ongoing major health issue such as diabetes to be suffering from SIBO so she hasn't been too helpful. Although I do have endometriosis which she is aware of.

However, I joined some online support groups for SIBO sufferers and they are adamant it's a genuine issue and most probably affects 70+% of people diagnosed with IBS. But the regimes and the antibiotics they take seem so hardcore with many people feeling really unwell during treatment and often having to go several rounds before killing the overgrowth and getting the SIBO levels down, often taking months to years to feel better.

I have tried everything to rid myself of my gut issues but despite all test returning clear I seem to be getting worse rather than better (I know there is a huge stress element involved in gut issues and I am probably stuck in a chicken and egg situation) but I have this constant nagging inner voice telling me that my issues may all be related to this bacterial overgrowth.

But I don't want to feel even worse than I do now though I honestly don't think I can take that emotionally or mentally.

Has anyone had this and managed to treat it and feel better without feeling much worse whilst being treated and did you have to do this privately?

Yes me (I think, hopefully!). Positive for hydrogen SIBO, did a course of rifaximin which didn’t fully clear it. Read up a lot about herbal alternatives, I’m now taking a fairly comprehensive regime but I am SO much better (after about 20 years of suffering the same symptoms as you).

mornings I take:
2x oil of oregano capailes
1x Berberine capsule
1x probiotic (I take alflorex as recommended by my gastro)

evening I take:
2 x oil of oregano
magnesium supplement
a motility supplement

I stopped taking the oil of oregano for a while and symptoms returned so it does seem to be a permanent regime but it’s worth it for the relief

Have you tried the Fodmap diet? My daughter was dxd with IBS after IBD ruled out but gut issues can be related to endometriosis and mimic IBS. I used to have similar symptoms to you & I'd blow up like a barrage balloon. The symptoms gradually got less and eventually mostly disappeared but certain foods can trigger it like wheat, corn, battery farm eggs. Have you been tested for food allergies or any intolerances bar gluten?

I have managed to treat it and feel better/make it more manageable.

Most of my progress didn’t come from the various rounds of antibiotics/herbal supplements tjay get recommended. I did try those, and the elemental liquid diet. I didn’t feel bad on Rifaximin, herbals had a bit of an effect but nothing I couldn’t manage and the elemental liquid diet made me feel like death warmed up not just during treatment but for about a year after.

Researching various diets and trialling them to see which aspects of them worked for me, then coming up with something bespoke worked well for me.

Diets that had elements that worked for me were Low FODMAP, Fast Tract and Japanese Low Sulphur diet that is recommended in some cases of IBD.

I know anecdotally that for some people have add better success with the SCD diet than the Fast Tract diet (which makes sense because both focus on types of starches, the SCD diet favours amylose based starches and the Fast Tract Diet favours amylopectin based starches, so they are in a sense much mirror images of each other as diets, it’s just that for some people the particular bugs causing their dysbiosis favour one and for other people and
their particular bugs favour the other.

Anyway, I made some progress with that although the diets were pretty restrictive and it was a lot of work figuring out everything and cooking meals tailored to them. It’s really worth doing the exclusion element of the Low FODMAP diet and finding out which complex carbohydrates re particularly problematic for you, as they vary. For me, I am ultra sensitive to polyols and pretty sensitive to fructans and fructose. Galactans and lactose I have more leeway with.

Then I also found some ranges of specialist enzyme supplements which dissolve the aspects of food causing the problems.

There is one called Fodzyme which helps along the lines of the low FODMAP diet. It helps digest fructans, lactose and galactans. This is made by a company in the US and it’s much cheaper to buy it directly from them an get it shipped than buy it from a UK based reseller. If you buy directly from them they also offer things like consultations with nutritionists and seminars as a perk.

There is Fodmix, ( formerly Quatrase) which helps with fructose, lactose and galactans as well as sucrose. It is made by a company called Intolwran based in the Netherlands. Again cheaper to buy from them directly and have it shipped. And again they have a consultation with a nutritionist as a perk.

Worth noting that neither of these help with polyols which is one of the FODMAPS which can be problematic. There isn’t anything on the market as far as I am aware which helps with that.

Anyway, Intoleran makes various other things too.

I use Starchway, which helps digest starches (so helps me with the type of thing covered by the Fast Tract Diet) and Fructase. Fructase breaks down fructose which is handy for two things. Firstly, eating something like a piece of some fruits where the only FODMAP present is fructose. Fructose is a lot cheaper than the others so just taking those is more economical (there is a similar specialist enzyme called Lactase which works with lactose, there are various brands of that and the best one I have found is called Lactojoy. I don’t have many issues with lactose in whole foods but do find that it’s in a lot of medications so take a Lactojoy with those).

Secondly, Fodzyme breaks fructans down into fructose, but then you are left with fructose and as I am pretty sensitive to to that I will take Fructase in addition.

I also take something they make called DAO mini which helps break down histamine, which can be a confounding trigger for people which gut issues (often due to the histamines produced by the bad bacteria in their guts rather than by histamine in food itself).

Along the way I also found the probiotic supplement called Ideal Bowel Support (or IBS as an acronym) by Jarrow Formulas very helpful.

It’s an area where the scientific knowledge is expanding fairly rapidly and treatment is quite a way behind. There’s lots of work on how some types of bacteria cause lasting immune changes. People who have published interesting work include Mark Pimental and Thaddeus Stappenbeck if you are interested in that type of thing.

Yes my son took vancomycin. He felt dreadful but better once he finished the course. His paed gastro wanted him to do vanco twice a year on the grounds that with his conditions he had SIBO ongoing. He flatly refused to take it the next time though. He also was on elemental formula (alfamino) for 6 weeks with no other food. That was awful but I think it helped.

Currently I think he has SIBO, talked to our lovely GP who said she is on the fence WRT the existence of SIBO but happy to leave the decision to me about medicating as she trusts the paed gastro. He aged out of seeing the paed gastro and we don't really have a gastro I trust. She gave me a script for rifaximin but it's $450 so we are going with the cheaper option. She's also ordered faeces MCS OCP x 1 Pcr. He's a non-hydrogen secretor so that doesn't work.

That gives me hope, I've considered going down the herbal route instead of more antibiotics. How did the herbals leave you feeling initially? I've read that oregano can make you feel worse.

I've been low fodmap for many years. It used to help immensely but not so much anymore. I know my triggers foods and always avoid them (dairy, eggs, wheat, chicken and several others).

I've had food intolerance tests and they always flag up the foods that I already avoid.

Thank you, that's very helpful.

I have followed the low fodmap diet for many years. Initially under the guidance of a trained NHS dietitian, I know the diet well now. I avoid all of my known triggers and have modified the diet over the years. It used to work well for me but stress, perimenopause and endometriosis and adenomyosis have all worsened the issue.

I did the scd but found it way too restrictive and it made me very depressed.

I follow Mark Pimental on SM and have his book. I've tried most of his suggestions but still have issues.

I was able to get a trial of Fodzyme a year ago, it helped a little but it's so very expensive that I couldn't justify buying something that only mildly helped. I will look into the Jarrows bowel support and the antimicrobials though. I've used that brand before so know they are good.

I've been looking into MCAS and histamine intolerance a lot recently and someone suggested DAO, do you find that helps a lot?

I'm loathe to keep spending on supplements having spent a small fortune over the years with a cupboard full of half used products which didn't help and now I'm on a tight budget so need to make wise choices.

Your poor son. It's a horrible thing to deal with as an adult but must be even harder when young.

I really hope that he finds something which helps him.

I felt ok on the herbals but perhaps that’s because I had already done the course of rifaximin, which I had a big reaction to (felt fluey and had red welts appear on my cheeks, though I do also have rosacea which is a lot better since treatment for sibo). These are the oregano oil capsules I take, I take 4x the dose on the package but this is in line with the recommended sibo dose. They are quite reasonable in price so I think worth trying amzn.eu/d/g5MYoD2

Another thing to consider is gut motility poor/slow movement can encourage the bacteria to flourish. I take the magnesium and this motility supplement every evening (alongside the oregano) and I’m like clockwork every morning now (plus sleeping better!) supplementhub.co.uk/products/motility-assist-30-capsules-biocidin-botanicals?channable=05d3ec6964003535313935393931333433343930db&nbt=nb%3Aadwords%3Ag%3A21247548462%3A164296611320%3A698318609945&nb_adtype=pla&nb_kwd=&nb_ti=pla-557757470793&nb_mi=6950465&nb_pc=online&nb_pi=55195991343490&nb_ppi=557757470793&nb_placement=&nb_li_ms=&nb_lp_ms=&nb_fii=&nb_ap=&nb_mt=&gad_source=1&gad_campaignid=21247548462&gbraid=0AAAAADP6rnk66kcPOoekao-EQDWV3ccVK&gclid=CjwKCAiAjojLBhAlEiwAcjhrDr1zjdEk3g6Vhq4Ria3URlmtfNFKN89FZnQuK10jPCErJh03iZaBUhoCUiIQAvD_BwE

i got prescribed beta blockers for stress and, as a side effect i never realised couod happen, they’ve helped my gut! they are propranolol 40mg tablets once or twice a day.

i know it’s a different angle to approach your problems but may be worth considering to address the stress and see if the gut improves too?

You say your gastro doesn't have faith in breath tests but as far as I understand small bowel aspirate and culture during an upper endoscopy is the gold standard for diagnosing SIBO. Has this not been done already during your endoscopy? Perhaps you could ask your gastro if this has been done, and if not, why not given your longstanding history of digestive problems? I know that's not what you asked but it's just something that stood out to me.

That's a great price for oregano, all the others I've looked at are pricey. I will get those, thanks.

I have tried various forms of magnesium and they all make my gut issues worse. I have also been hesitant to try a motility agent as I suffer more from diarrhoea than constipation and obviously I don't want to exacerbate that, I struggle as it is to function on a day to day basis. Are they likely to cause more frequent bowel movements and potentially worsening of diarrhoea? I know from the SIBO support groups that I follow many people do take a motility agent.

That's really good to know. My GP prescribed me propranalol just yesterday (I've yet to pick them up from the pharmacy). I have been trialling various antidepressants over the last few years as I am under a lot of stress caring for my elderly mum with dementia but they have all exacerbated my gut issues and made me feel worse.

She prescribed me 40g but said I can halve them to start if I am worried about side effects. If they help with my gut issues that would be fantastic, the more my digestive system plays up the more stressed I get and so the cycle continues!

I agree, they do say it is the gold standard for SIBO diagnosis but she just won't agree to it. She says it is very expensive to do and not widely available within our trust or many others. I had my third (in 15 years) gastroscope last Friday and I am finding the older I am getting the more traumatic I am finding the procedure. Tbh, I never ever want one again.

I would rather treat myself as having SIBO regardless and try as many strategies as I can to rid myself of it. I have been reading a lot of research on the subject recently and because the small bowel aspirate is quite rare to do on the NHS and as the breath tests are unreliable many physicians are starting to treat based on symptoms rather than

I can’t help with the SIBO side, but I saw your comment about finding gastroscopy distressing, and thought I’d mention that I had my most recent one nasally, which was amazingly easy in comparison with the oral route - the scope is thinner and you can talk and swallow, and don’t gag, all the way through. I had mine in Bath but the success of their trial (details below) might mean it’s more widely available now - it’s definitely worth asking.

www.supplychain.nhs.uk/news-article/transnasal-endoscopy-improves-patient-outcomes-and-productivity/

As you mention you have both D and C but Jean to D, have you looked into hydrogen sulfide SIBO at all?

Pepto Bismol of all things can really help with that.

I really hope they start rolling this procedure out over more hospitals. That does sound much less stressful.

I do take pepto quite regularly but have been advised by my gastro not to take it more than 3 consecutive days running so I often take a weeks break and take it again for a few days, it definitely helps me.

I don't really suffer too much from constipation more loose/diarrhoea and tbh I wouldn't be able to afford the breath test privately, it's hard to get on the NHS.

Sorry I meant lean there not Jean.

Afaik the breath test (Trio Smart) for hydrogen sulfide isn’t available yet outside the US. Although it’s been a while since I emailed them tbf, I emailed them about it so often the customer service guy said no need to keep doing so, he’d email me if it became available.

Anyway, if Pepto does help, that’s a pretty strong indication that there is Hydrogen Sulfide SIBO in the picture because the bismuth in Pepto binds the sulphur.

I take Pepto intermittently as well, but I have found that moderating my dietary sulphur intake does help too.

Here are some links to lists of the sulphur contents of foods that I have found helpful:

https://pmc.ncbi.nlm.nih.gov/articles/PMC1264524/pdf/biochemj01022-0143.pdf

https://wholefoodcatalog.info/nutrient/sulfur_containing_amino_acids/foods/low/

<a class="break-all" href="https://web.archive.org/web/20170425072810/livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/" rel="nofollow" target="_blank">https://web.archive.org/web/20170425072810/www.livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/

It seems pretty complicated but in practice in works out fairly simple. One direction that can be taken is to be vegetarian or semi-vegetarian as there is a lot of supplier in animal foods, especially red meat. The other is to be omnivorous and make some simple changes, basically:

Avoid crucifierous vegetables as much as possible. I tend to stick to chard and spinach for green veggies now.
Stick to chicken rather than red meat as much as possible and a fairly small portion. I do very occasionally eat red meat but stick to lamb rather than beef. I eat pork every now and then as well.
Full fat dairy rather than low fat works better. For some reason powdered milk causes me less issues than fresh milk too, no idea why but maybe the processing alters the proteins in some way?
Trout for salmon
Avoid eggs whenever possible
Avoid carrageenan like the absolute plague as an additive in foods

I did a bit of a sulphur detox at the beginning, followed a Low FODMAP & Low sulphur vegan diet for about a month and that did help a lot although it wasn’t sustainable in the long run as it was so difficult to get adequate protein.

That combined with using jasmine rice other other types and waxy potatoes rather than floury ones (the main thing I took from the Fast Tract Diet) in combination with the Low FODMAP Diet (which also stopped working well for me after a lot of initial relief, until I added Fast Tract and Low Sulphur tweaks).

To be honest it wasn’t until I started combining things from different approaches at the same time that I really started to make progress. So it even when something became less effective, like Low FODMAP, I did some trials to see which aspects of it were still working for me.

So in effect I basically did an elimination phase again, because the balance of gut bacteria does change over time as your diet has changed, so sometimes the triggers change a bit over time. I also eat twice a day usually, and always leave a good space between meals, which were tips from Pimental. A lot of things that didn’t make much difference in themselves, did start adding up to something when I combined them.

A few other things that have helped with managing sulphur:
Adding Epsom Salts to baths. It’s a lot cheaper to buy big bags from garden suppliers etc than get bags designed for baths.
Supplementing with liquid molybdenum and liquid B12 as hydroxycolabalamin. I get those from Metabolics, the smallest bottle of each lasts about three months.

What about maybe trying the enzymes again, but maybe cycling them like you do with Pepto to manage the costs? Fodzyme works out about £1 a dose, not far off the cost of a dose of Pepto, and Fructase is about 50p-£1 a dose depending on how many capsules you need a time. I think they might make a bit of a difference even just used sometimes.

Before the enzymes were available I also used to have “firebreak” weeks when I would only eat chicken and rice and spinach/chard (things which were safe in terms of all the diets I have mentioned, and which I found out by trial and error never caused me issues) to give my tummy a reset, so maybe some kind of rotation of periods of ultra safe foods, Pepto and enzymes might help? Just to try to never let the dysbiosis build up too much.

Sorry for all the detail, been battling this for about thirteen years now and it really is a battle.

Thank you so much for your help. I will sit down later and go through everything. I will look into gong low sulphur, I am prepared to try anything at this point.

ZenZazie Do you still use the Fodzyme even when following the low fodmap diet? I sadly can't afford it right now as I am on carer's allowance so money is quite tight. I would splash out if I really thought it would help but I didn't really see much change when I did the trial, I was strictly low fodmap as well. I have used a digestive enzyme from a company called Just for Tummies in the past, I think it helped somewhat so I may trial that again and see if it helps.

I do think that I may need to supplement with B12, my bloods are always within range with the NHS but are on the low side of in range and I know some B12 groups say that would probably require supplementing or even self injections so I need to look into that this year too.

I use the Fodzyme and other enzymes to let me eat things that I wouldn’t eat on the Low FODMAP diet, or to eat larger portions of things I normally restrict.
But I don’t do overboard with that. I still
avoid my very worst triggers (for example,
onions/garlic, which are also very high in sulphur as well as fructans, or wheat and anything with polyols as it does nothing for polyols).
But it has opened up a much bigger range of fruits and vegetables for me, as well as dairy and pulses. For example sweetcorn, peppers, tomatoes, courgettes, squash, artichokes, asparagus, raspberries, mangoes, grapes, some types of melon,
chocolate, cream/whole milk/soft cheese all used to be pretty much impossible for me and now I can have some sometimes. I used to be pretty much restricted to a few vegetables, rice, potatoes and meat.
That meant no fruits, no dairy, no pulses, one type of nut, no chocolate and it was difficult and soul destroying and I was very poorly nourished and my health suffered from that too as well as the symptoms from the illness itself.
It is really important for me to work out which FODMAPS are in a food and tailor which enzymes I take.
So if something has fructans only I will take Fodzyme and Fructase (Fodzyme breaks down fructans into fructose so if you are sensitive to fructose you still have excess fructose to deal with). If some has fructose only I will take Fructase. If something has galactans I will take Fodzyme or Fodmix. If something has lactose only I will take lactase. If something has the wrong type of starch I will take Starchway. Fodzyme and Fodmix are definitely the most expensive per dose, the other ones are a lot cheaper. There is also another enzyme called Fibractase Forte which breaks down galactans and for a while I bought that too to use for foods that only have galactans as it was cheaper, but I didn’t use it often enough to make the saving worthwhile vs the possibility of having things go out of date before I used them.
And if the thing I want to eat has a a variety of FODMAPS in it I will take multiple enzymes. I try not to do that often but for something special like Christmas I will push the boat out.
Intoleran (the company who make Fodmix, Starchway and Fructase) also do small trial size packs of six tablets and mid size packs of 36 as well as the full size packs if you want to try things without splashing out.
So for me it’s a combination of different strategies to try and find a balance of getting a reasonable diet, managing my symptoms, not spending too much money and being able to live my life better. It does take a lot of juggling but for me the results have been worth it. When I look at where I am compared to five or six years ago it really is night and day.
Soemthing that worked for me when I was first trying them out was to ask for a them as e.g. birthday/Christmas presents from family so I could eat pretty much the same meals as them on those days. It helped me psychologically to be trying them for more than just food.
Also if you pm me your address I could post you a few of each thing that I have to try if you want. I have Fodzyme in little individual sealed sachets but the others don’t come individually wrapped so I would totally understand if you don’t want some random sending you supplements in the post.
Good luck anyway

And another thing that helped was no fermented foods