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Hydrogen breath test

Good morning all.

Haven't posted on here for a while again, been having a bit of a living nightmare but I know I don't need to bore y'all with the details of trying to get a diagnosis. We're all resident experts in that field!

I wanted to know whether anybody has had this test and what their experience of it was like? I'm aware of what the test is looking for but was unable to take it due to my initial reading of 145. Apparently they need an initial reading of below 20 to allow the test to begin, so it's a reschedule for me! I've searched the breath test on the forum but there's not a huge amount o info on here about it so just wondered if anybody would mind sharing their experience of it?

Thanks for reading, and I hope that everyone is as well as can be, take care.
I had a Lactulose breath test which I think is similar.

I had a drink of some funny stuff and a sample of my breath was taken once or twice an hour over the morning. Special diet the day before and water only from 8pm previous to the test.

The drink can give you gas, do nothing or make you need the loo. Sadly I fell into the third group, it was just like having a prep :( But I was at the Hospital so there were lots of toilets.
Thanks for getting back to me so quickly star, I think we've chatted on here before?!

The test you had sounds very similar indeed, I know they were going to give me a glucose meal and then monitor the hydrogen levels in my breath over the following few hours. I've managed to get a retest for next week which is really good, my only concern was the level that I blew initially. They weren't able to even begin the test due to my initial reading and I just wondered if anybody had any thoughts or experience of something similar?

I was thinking that such a high reading must be a sign that something is clearly going on but I'm sure if I blow the same again that they'll actually look at it with some degree of concern! Here's hoping anyway!

I've looked into what the high reading could mean but that just causes more confusion! They say that people who have had previous ops and therefore scar tissue are more commonly affected as it means that stool is backing up in the small intestine. I was originally backed up this time last year so I'm praying that this isn't the case again! If it is then that causes even more concern as there has to be a reason for all this Yo-Yo ing of symptoms!

Sorry to be bombarding you with so much info, I've just realised I've done my usual and have began to waffle! Also please don't worry if you're unable to offer anymore insight, from what I understand this isn't a pretty common test and I've found even fewer people with a high reading to discuss!

Hope things are good with you? ( I know good is probably not the best term to use in here, maybe bearable?!)
I think the breath tests are used to look for different things. Mine was to rule out small bowel bacteria overgrowth, so if I had had a high number with that I think it would have confirmed it!

Perhaps we all get the odd high reading, which would mean they'd want a more regular starting point. Only guessing though. I do agree though that if you get another high reading, maybe someone will sit-up and take notice.

Thanks for asking, not even bearable these days sadly! Rheumy is being very helpful though, and seeing a new GI next week (although I don't hold out much hope).
Yeah that's what mine was in aid of too. It's just one other thing they want to check as apparently it can present with a lot of the symptoms I'm suffering with, although I seem to be suffering with more but hey!

The bit that bothered me was that I haven't had any surgeries or anything that I can think would cause this so still a bit lost. But not long to wait until the retest so I'm not gonna dwell on it too much for now!

I'm so sorry to hear things are still so bad for you star, I've read a few of your other threads and I knew you were having a horrid time to say the least. I'm guessing the new GI is due to the incompetence of your previous one?! Sorry to ask but was it you that had your pillcam test withdrawn? I really hope that you make some inroads with this new one, let's pray that he has even a shred of compassion and just a little intelligence would be nice!

I know you've been through the mill but don't let them get the better of you, it's times like this when I wish it were possible to bring some of the folks on here to appointments, that'd soon even up the odds!

Edit - sorry, I've just seen about the pillcam on your footnotes.
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Hi Craig,
There doesn't appear to be a lot of info on high basal levels of hydrogen. It can be to poor prep..recent high fibre in the diet etc but I did find a few references to it possibly being due to slow transit time, ibs or bacterial overgrowth (for the latter see extract below :-
"Some authors considered high basal levels of breath hydrogen as evidence of SIBO;4,28,29 how- ever, such criteria would compromise the specificity of hydrogen breath test as fasting breath hydrogen may be high due to action of oral bacterial flora on test sugars despite oral cleansing with chlorhexidine.27 Therefore, we did not diagnose SIBO based only on high fasting breath hydrogen levels. This view is supported by previous studies that showed highest specificity of diagnosis of SIBO when rise in breath hydrogen following ingestion of test sugars is com- bined with high basal breath hydrogen levels."

You probably found this yourself but thought I would post just in case you hadn't. :ybiggrin:
I'm so sorry to hear things are still so bad for you star, I've read a few of your other threads and I knew you were having a horrid time to say the least. I'm guessing the new GI is due to the incompetence of your previous one?! Sorry to ask but was it you that had your pillcam test withdrawn? I really hope that you make some inroads with this new one, let's pray that he has even a shred of compassion and just a little intelligence would be nice!
Thanks mate, yes my last one was incompetent, had been unhappy for a long time with him, but the final straw was when he told me to go away, tell myself he's said tests are all normal (not) and I will feel better. About 3 weeks later I ended up in A&E with severe pain in a bad attack, so severe they gave me oral morphine within 20 mins before I had even seen a Dr. :voodoo:

At the moment I am undecided, Rheumy has suggested since Gastro are not much use to come to him alone for care, and testing seems to be leaning towards auto- immune rather than GI specific. So do I persist with Gastro as those are my main symptoms and make them help me, or just ask this new one if he agrees with previous, in which case I will ask to remain an active patient but come in every 3 months or something. In case I have drastic GI problems or something GI specific comes up in a Rheumy test in the meantime, since new patient referrals take months.

Apart from the Pill Cam I have had all the GI tests anyway, and not willing to do any repeats yet. So not sure how much use a new GI will be but feel I need to try. As to the Pill Cam, my ex-GI genuinely wanted me to have it, but someone stuffed up and booked me in before funding approval. As it was declined I didn't get it. PCT will only approve if you have biopsies positive for CD or are aneamic through a suspected small bowel bleed. I don't fit either of those; how my iron levels are normal I haven't a clue since I do pass blood but they are.

I should have some test results too when I see new GI, upper endoscopy biopsies and a stool sample to see if my pancreas is working properly, but probably all normal as usual!

Do come back and let us know how you get on next week, and I will too. :soledance:
Thanks again for your input LMH, I've replied to your PM too so I won't bother you with it all again, hope you're well though.

No problems star, I really do empathise with you. I know the stress and impact this undiagnosed state causes on lives and I've certainly come into contact with arrogant and sometimes rude doctors. But for him to say that is nothing short of disgusting! Hearing that things like that happen to good people makes my blood boil, you've done amazingly well to still be as composed as you are!

I'm glad you're still fighting though, do new patient referrals really take that long?! I know it's added stress but I would be on at them daily to get things speeded up. I've quickly come to learn that the polite way of waiting for return calls never actually materialises! Is there nothing more your GP could do for you to get things actioned a little quicker? I'm only asking as I've had to do the same although it wasn't a new patient referral, I just needed a follow up appointment ASAP. So I asked the GP to do the utmost he could and with the highest urgency as I'd spent the whole night in absolute agony, couldn't think about sleep let alone try it!

It's good the rheumy is proactive and onside but personally I'd still be pursuing the gastro too. Even though you're not ready for more retests yet it will hopefully be good just to get a fresh perspective and speak to somebody who actually listens and cares. I really hope you get some results soon too with the scopes but can certainly share your scepticism and doubts, I think it's a mindset we've all come to know unfortunately.

Good luck with all fronts and yeah speak soon, take care of yourself,