SIBO: Has anyone been tested for SIBO and been... - IBS Network

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SIBO

cassie17 profile image
25 Replies

Has anyone been tested for SIBO and been found to have it ?i'm going to try and get tested for it,I feel sure I have it from the symptoms .I mentioned it to my last gastro dr about 5yrs ago but he didn't make any comment i.m going to contact him again and ask.I'm in uk.

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cassie17 profile image
cassie17
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25 Replies
Agapanthus profile image
Agapanthus

If you mention the Hydrogen Breath Test to your gastro, hopefully he will test you for SIBO as that is the test that it done. I was a bit astounded to find that they actually do test for it on the NHS (even in Cornwall), but info on the test is a bit thin if you google it.

If you put in NHS and Hydrogen Breath Test you will come up with a couple of hospitals that have done PDF info sheets on it. One of them states that it's a test for lactose intolerance, carbohydrate malabsorption and small bowel bacterial overgrowth.

I only know this because a few years ago I thought that I might have SIBO, and I asked my GP if the test was done in Cornwall and she found out the info for me. However I had adapted my diet so well and treated myself in various forms that the problem disappeared.

cassie17 profile image
cassie17 in reply to Agapanthus

Thanks Agapanthus did you use oregano and grapefruit oil?

Agapanthus profile image
Agapanthus in reply to cassie17

Hello Cassie. Yes, I did use oregano oil but not grapefruit. Also reduced sugar in my diet - actually cut it out entirely for a while.

fjfj profile image
fjfj in reply to Agapanthus

How do you get the referral in the first place? It is frustrating but GPs think high of their knowledge and do not refer patients to access all of the specialist treatments.

Agapanthus profile image
Agapanthus in reply to fjfj

fjfj - I have been referred to a gastroenterologist in the past on my request, so yes, it is a case of convincing your GP first that you have a need to be referred as they have not sorted out your problem. I was never tested for SIBO but the best thing would be if you could persuade your GP to refer you to the right department that might do this, and for them to mention it in the referral letter - gastroenterology would be the department I am sure.

hi I had test this week.came back negative.took about three hours to do tests.nothing to eat for 12 hrs brfr and no water or anything during three hours breath tests.think change in eating has upset system.lots of belly ache since.think wheat problem not just gluten.hopefully you can get tested soon.regards geoff

cassie17 profile image
cassie17 in reply to grahamrupertrules

Thank you grahamrupertrules ,did you have it done on nhs?

Hi cassie,I've asked that same question to all my gastros,and got the same response as you. But the gastro I've got at the moment,I pressed for an answer,and he said most people have it anyway,and if you've got stomach problems you probably have got it,but it won't be the cause of your problems. So make of that what you will.

What I have read about a lot is leaky gut,and the way to a healthy gut is bone broth,and I've tried it and it's quite nice,but once again I never kept it up. All the foods we've stopped having nowadays like liver,kidneys are said to all be good for the gut,and general health. You look some of these foods up on google,and see for yourself.

Just as we were told from the IBS conference .

cassie17 profile image
cassie17 in reply to

Hi Gemini,yes I started making the bone broth but it became to much trouble so ive been taking green lakes collagen hydrolysate powder(from amazon) in my first cup of tea its supposed to be the same as bone broth but been taking it for nearly 3months and its made no difference ,im thinking of trying oregano oil next that is supposed to kill sibo off if you have it,Its the only thing that keeps us going really isn't it keep trying things that maybe one day will help.I wish I had all the money that I had spent over the years on remedies.I don't have much hope of getting a sibo test .

fjfj profile image
fjfj in reply to

As a vegetarian, I get quite thrown back by non veg treatments, but would like to ask if you are aware of a veg alternative.

Over the years I don't think there's much I haven't tried,like you say it costs a fortune,we're just making someone rich out of our miserie.

Keep trying.

cassie17 profile image
cassie17

Ive just ordered oregano oil capsules and grapefruit seed oil capsules,they both have good rev iews so il let you know lol.x

bigbunbun3 profile image
bigbunbun3

Hi just thought I'd mention that I tried to get my GP to refer me for the H/B test, but no response, so I decided to pay myself. As I have IBS-C the result came back I had high Methane and Sibo was suspected. My Nutritionist reccomended to remain on low FODMAP diet, along with Allicin ( FODMAP friendly ) & Oregano extract. I also have found out that I have Candida & other dysbiotic bacteria ( stool test results ) so will have to battle those after the Sibo. The cost of all this has been a real struggle but I had to find out what was going on inside my gut. I'm just hoping that after the strict diets & expense there will be light at the end of a very long tunnel 😃

cassie17 profile image
cassie17 in reply to bigbunbun3

hi bigbunbun,I have mentioned it to my gp and gastro dr but neither offered the test,I have enquired about having it done private but they said they don't contact gp with results if its positive so I wouldn't get the antibiotics needed to kill it off,ive decided to try the oregano and grapefruit seed method,you are right about the cost I have spent a fortune over 20yrs on tests and remedies but still searching,the only probiotic that helps me at all is VSL3(works out expensive) and surprise surprise Gp can't prescribe that either he can only prescribe stuff that is of no use to me,all we can do is our own research ,I think I could write a book after all these years lol.

bigbunbun3 profile image
bigbunbun3 in reply to cassie17

Hi cassie17, thank you for your reply. I too have had IBS for over 20yrs, and it steadily got worse. As I mentioned I am seeing a Nutritionist, who organised all my tests, and advises me on supplements ect. I too have tried many probiotics with no avail. I will take them again when I have finished all of the protocols.

It is great to have this forum, as people on here understand our every day battle with IBS. Take care 🐰

cassie17 profile image
cassie17 in reply to bigbunbun3

I agree bigbunbun,only people that have this life changing illness understand how bad it is,at least we are all in the same boat on here,hope you have success with your nutritionist.x

bigbunbun3 profile image
bigbunbun3 in reply to cassie17

Hi thank you, hope you feel better soon x

Lamloum profile image
Lamloum

Hi all

Along with the sibo test try and get the breath teat for fructose malabsorption as apparently finally that got me somewhere and I am much better by cutting out fructose, dairy, gluten, and going ahead with a low FODMAP diet minus garlic and onions etc..

Very hard at the beginning but way much better now .

I lost some of the weight I put on. Only boat when I eat something from the above. My outlook on life changed . Can actually sleep with no gurgling noises or gas all night . no more sugar craving or eating haphazardly and no more irritability and crying for no reason. Also I don't get itchy eyes and severely dry skin any more . So it was all a reaction to eating foods that did not agree with me anymore . I have been tested for all sorts of food allergies all came back negative . So I am not allergic just intolerant . And avoiding these foods is the only way fwd . You just need to know what foods these are ...

It takes being pushy with the GP but alll these tests are needed and are done the same way taking different solutions to drink and blowing through the same machine. A referral to a gastroenterologist or lab is essential as GP's don't do these tests in their surgeries and most of them have not even heard of them .

I was told I had SIBO and I took antibiotics for it . Did not improve . ACTUALLY got worse and eventually got the fructose malabsorption diagnosis .

Also worry testing for H pylori and vitamin D defficiency . And having a stoop test to check for parasites and naughty things that could be inhabiting your system like E. coli and salmonella etc... Without treating them you won't get better .

At least that's what my experience taught me .

Good luck you all .

cassie17 profile image
cassie17

Thank you Lamloum,That's worth knowing, x

hi yes on nhs. My Dr. hadn't heard of it but she found it available . i know cambridge and Leeds area offer this.

regards

gff

mick2561 profile image
mick2561

I tested positive for sibo I was put on antibiotics for 6 weeks alternating between metronidazole and ciprofloxacin it worked for me ive had a couple of flare ups since but not on the scale I was having them eggy burps severe cramps etc you drink a pure glucose drink then get breath test over 3 hours good luck

fjfj profile image
fjfj in reply to mick2561

How did you get there? What did you say to ur GP?

mick2561 profile image
mick2561 in reply to fjfj

Hi i was having constant flare ups thinking it was my IBSD my consultant referred me for a hydrogen breath test which came back positive i am suffering really bad with it ATM but dont want to give in to more metronidazole :-(

fjfj profile image
fjfj in reply to mick2561

Did you get prior treatment for IBS, or did you get treated with antibiotics right away?

mick2561 profile image
mick2561 in reply to fjfj

I've been taking Meds for my ibs for years the sibo just appeared they thought it was my ibs playing up till I had the breath test

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