In 2008 I was diagnosed with fibromyalgia and then IBS-D followed in 3 years. I've been able to manage fairly well using the FODMAP diet and taking immodium as needed. However, just recently nothing seems to help much. Usually my system will clear within 72 hours if I've eaten something I shouldn't have.
But now I'm having fatigue, nauseanousness and heartburn and nothing is helping. I had a colonoscopy 2 months ago and tomorrow will follow up with a gastrologist tomorrow
I have no energy and feel awful and just feel like crying.
Does this sound familiar to anyone else?
Anything you can think of I should be asking the gastro tomorrow?
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camas7788
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Have you been following the FODMAP diet fairly strictly i.e. you're not eating many or any FODMAPs at all? The reason I ask is that unfortunately FODMAPs are good for you and good for your gut. I was on a very low FODMAP diet for years, which helped initially, but eventually my symptoms came back no matter what I ate. This is because being low FODMAP for too long reduces feed for the microbiome creating and maybe also adding to existing gut bacterial imbalances. It is catch 22 since these imbalances can create food intolerances, so it is a vicious circle.
I started taking Alforex probiotic which has been scientifically studied for IBS and I became more tolerant to a wider range of foods and FODMAPs - I can't eat anything I want, but my diet is so much better and more varied. Alflorex helps to bring the microbiome back in balance.
You mention you normally clear in 72s, have nausea and heartburn. Have you been constipated? Constipation can cause these symptoms. Additionally, the FODMAP diet is low fibre, so can contribute to constipation.
What you say seems to chime with Prof Tim Spector’s Zoe Health Plan approach, which is to eat a variety of foods to improve the gut microbiome. Whilst the FODMAP diet is intended to identify true food intolerances, I didn't think it was intended to be continuous and some intolerances may actually be due to lack of specific microbial flora in the gut (such as those which digest longchain carbohydrates and fibre).
I’ve just received my gut microbiome results, and they’re pretty bad! Whilst I have quite a large proportion of two good bacteria, I also have far too many “bad” ones, and an insufficient variety overall. Oddly enough, the Zoe project doesn’t include bifidobacterium longum (the probiotic in Alflorex) amongst the “good” bacteria; this might be because they are looking at sugar and fat responses rather than low level inflammation, which seems to be the benefit of Alflorex. In fact, only 3% of my gut bacteria derive from Alflorex, so it might not be that significant. So it looks like I’m in for the long haul, which I guess we all are!
Hi Superzob, Interesting points. I have some questions:
Are you saying that you take Alflorex daily and were taking it during your gut microbiome study?
If this is the case, how long were you on Alflorex for prior to the study sample taken?
Is this your first microbiome test with them?
Were you eating a varied diet prior to the test or is this the baseline before any changes in diet?
How do you know that 3% is due to Alflorex?
I know the quantity of Alforex in 1 capsule is quite low (1 billion), but due to the strength of the probiotic in fighting infections, I understand that not a lot of it is needed.
Here is some info I've recently found about Bifdobacterium (in Alflorex):
One of the main functions of this type of bacteria in humans is to digest fiber and other complex carbs your body can’t digest on its own
I've certainly found that I can eat a variety of complex carbohydrates now being on Alflorex, whereas before I couldn't consume any without IBS symptoms (pain and gas).
Bifdobacterium also produce acetate, which acts as feed for other types of bacteria in the gut which produce short chain fatty acids (SCFAs). SCFAs decrease inflammation in the body and help to guard against various diseases.
Good questions! I had been taking Alflorex almost daily for a couple of years, but didn’t change my diet prior to the test as I thought that would not give a true picture. I admit I assumed that the bifidobacterium longum in the gut had come from Alflorex but, as the test is unlikely to be able to distinguish between different strains of the same species, it’s entirely possible that some of it came from elsewhere. According to Precision Biotics, Alflorex does not colonise the gut, which probably explains why the amount is low and you need to keep taking it.
I suspect, for simplicity, the Zoe project concentrates on 15 “good” (of which I have just two!) and 15 “bad” (of which I have 12) bacteria, but the other 83 in my gut might also be useful (like Alflorex) or neutral. I don’t think they plan to do follow-up microbiome tests, so this was probably the first and last.
Presumably the idea is to get personlised advice from the tests, adjust your diet according to the advice and get and then get re-tested to see if there is an improvement in your microbiome?
Precisely, though because it’s a tailored plan, there would be enormous variations in individual responses, so I’m not sure when or if there would be follow-up tests (which would certainly make sense - perhaps they sample the results rather than test everyone).
sorry you’re feeling so rough. It’s frustrating when you are doing all the things you can to try to control the ibs symptoms & it still doesn’t work 🫂 Hope it goes well with your gastroenterologist tomorrow. As xjrs says try a probiotic, I split the capsule to use throughout the day to help me. I’m using Biokult & it has helped a bit, lots of people have been using Alflorex.
Hey, I read in some of the comments that you did everything apart from change your diet. I am not sure from some of the comments that taking one particular type of bacteria is going to help you recolonise the gut. However, it seems as though your ibs has changed from d to constipation. If you have some high fibre things like kiwis does that cause distress or help clear your system? Have you ever taken anything to eliminate the bad bacteria such as an antibiotics or natural antimicrobials? Best wishes, Catherine
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Cant cope anymore
Frustrated - Immodium reliable
Bad ibs gas, Desperate for help - doctor does not know how to help
Never been in so much pain!
