Immune system attacking probiotics?

Hi everyone, over the course of this disease I've found that I can't really take probiotics. They make me feel worse. I wonder if it's possible that my immune system is attacking the probiotics? I mean, it's attacking my digestive system, so it's obviously retarded, so I figure it's not a far leap that it could also attack (or perhaps "react negatively to" is better phrasing) probiotics.

I am thinking that maybe I have a so called "leaky gut," leading to bits of bacteria escaping to where they shouldn't be, leading my immune system to attack the probiotics.

Does anyone have similar experiences, or any theories on what is going on, or any miraculous solutions to help me tolerate probiotics?

It sucks because I probably have dysbiosis, but I can't correct it with probiotics.

I have tried everything, starting with food based probiotics (kefir, yogurt, sauerkraut, all kinds of random probiotic foods such as the Asian drink yakult, other little probiotic drinks you can find in the supplement section, Dr. Ohira's something or other, the list goes on). I tried clabbered milk. I tried making my own yogurt and kefir. I bought raw milk and tried making yogurt from that. I tried commercial goat and sheep milk yogurt. Strained, dripped, etc. I've tried every probiotic you can think of, VSL, culturelle, align, the yeast based probiotics, soil based organisms, I even ordered this one probiotic strain of Lactobacillus casei all the way from Italy. I've tried d lactate free probiotics that cost $100 for one bottle. The list goes on.

I'm obviously headstrong, but I'm ready to give up on probiotics.

Thanks! Well, I have sort of decided to give up on probiotics for the time being. I haven't taken any today, since what is the point, if they do nothing (actually make things worse in my case)? Probiotics didn't necessarily give me more flatulence, but rather increased pain (for the most recent ones I tried). You are right, I need to just listen to my body.

Thanks! A lot of people with IBD seem to say probiotics don't help them, but then, there are also a lot of people who say probiotics are helpful and even got them into remission. It's really confusing and, I agree with you, shows that this disease (or IBD in general) is not like other diseases. It's way more complicated. Perhaps probiotics are helping you in a minor way - I would definitely keep taking them if you feel they aren't hurting.

I was on the SCD for a couple years straight, and it didn't cure me. I'm back on again (minus the SCD yogurt - since like all probiotics, I don't tolerate that) after quitting it for a while. However, I still have inflammation despite also being on mesalamine (which does help).

Post Edited (Claire444) : 7/10/2020 4:49:13 PM (GMT-6)

I found vsl3 reduced my symptoms, but the first 2 days on it it was like I'd taken a laxative. Then I felt better.
I think it just depends what your body needs, how you react.
Some of them do colonise the gut, e.g. mutaflor.
Vsl stays in your system up to 3 weeks after stopping it.

Thanks poopydoop! I did try both VSL and Mutaflor. I'd say of all the probiotics I tried, VSL was the one that showed the most benefit in terms of bowel habits (reduced urgency I think), unfortunately also had negative immune system activation. I was on VSL for several days at least before I realized I had to give it up, I was having the worst brain fog and just felt like my absorption of food was worsened. Many probiotics, I realize right away that they are no good so VSL was slightly better in that respect. I had the same experience as you with the yogurt. Are you still on VSL?

Hi yes I'm still taking vsl3. Not sure if I need to but prefer not to risk a flare. I remembered now in the beginning, after reading reviews on amazon, that I started slowly, so the first 4 days I just took 1/4 of a sachet, then 4 days half a sachet etc.
Not sure if it was the probiotics which helped or the fact that the sudden change kicked out a load of bad bacteria. Because after the initial improvements I started to flare again 3 months later. And I'm also someone who feels great after a colonoscopy (because it cleans everything out) and after a 24 hour food bug (same reason).