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Comment by jmhain | Hacker News Reader

Be very careful with probiotics; just loading your system with random strains of bacteria from your local health food store can have serious consequences. I have IBS and an anxiety disorder that had been in remission for years. I tried Primadophilus Optima and it wrecked me. I went from a mild IBS-C to severe IBS-D, and my panic attacks came back with an intensity unlike anything I've ever experienced.

I don't doubt that intestinal bacteria are related to IBS and anxiety disorders and that certain probiotic treatments may help. But such supplementation should be based on detailed research of each of the strains taken, much of which does not even exist yet.

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IBS seems like the doctors way of saying "We don't know what your problem is".

Doctors told me I had IBS for 10 years, then a friend suggested to stop eating wheat, and 95% of my symptoms went away.

I'm actually about to start testing a FODMAP diet to see if I can improve my health any further.

Have you tried anything to improve your health, or did you just accept the IBS diagnosis? I only ask because I've seen no research that suggests IBS is a real thing, just a catch-all for many potential things.

I have Crohn's and I did the FODMAP diet when I had very severe symptoms. What I found: it does actually work and remediated a lot of my severe abdominal pain centered around eating (in conjunction with medication) BUT... I also found it absolutely miserable on its own. I think Soylent might be more appetizing to me by an order of magnitude. Good luck!

What did you find miserable about it? Elimination of certain foods or something part of what you were actually eating?

Replying to your paleo comment.

Yeah, I think for those of us with "Generic IBS" we need to be aggressive in trying out different approaches to try and heal our gut issues.

I went paleo once I realized wheat was causing me all sorts of stomach issues, and over the years I drifted more and more towards a "natural and whole food" diet, and as my intake of veggies grew, I realized that asparagus and brussel sprouts seemed to do a number of me. When I went to the gastroenterologist to try and figure out what was going on there, he first recommended drugs, which I declined, but he then suggested looking into the FODMAP diet, and it turned out that most fructans were triggers, as well as some polyols.

When I ate wheat, I suffered from tenesmus, depression, back acne, short-term memory loss, alternating constipation/diarrhea, migraines, etc. Now my only symptoms are diarrhea and some stomach pain when eating fructans. I'm hoping going FODMAP only will solve the remaining issues I have.

All that said, I'm just advocating that we try whatever we can so collectively we can get data on what works and what doesn't. If we just accept the doctors diagnosis of IBS and treat it with drugs, we'll never collectively solve the underlying problem.

I completely agree. Had bowel issues for years. Finally figuring out how to avoid that was worth all the tinkering.

I hardly think about it anymore. And I'm very glad to have figured it out without pharmaceuticals.

@Graeme (can't reply double-nested): I just found it to be very bland, boring and depressing. Chicken and rice, rice and chicken, tuna, rice crackers, blah. Go to the printer room in your office and start chewing on the printer paper/some cardboard in there. That's about how tasty the FODMAP diet is after about a week. It's even harder socially when you are restricted from basically everything on the menu. I guess your mileage may vary but those are my personal thoughts. I did Low FODMAP for about 2 months and by necessity (staying out of the urgent care/emergency room), not really by choice.

Ok, interesting. I eat paleo, and I seem to unintentionally eat low fodmap. Sauerkraut and some onions are the only ones I eat regularly. I checked the wikipedia list.

But not much rice. I eat a lot of local, pastured meats, sweet potatoes, much coconut oil for cooking and seasonings, so it doesn't seem bland. I find chicken very bland and would have trouble eating it more than a few times per week.

Used to have digestive upset, though in my case I'm not convinced FODMAPS had anything to do with it (like I said, unintentionally low fodmap). Nightshades seemed to have the greatest correlation for me.

Have you been tested for Coeliac disease?

A "syndrome" is a classification of related signs and symptoms without relating them to a single underlying cause, so yeah, that's what it means. As more is learned about the causes, different disorders can be removed from the syndrome.

True. But note that "can be" does not mean "will be". For example, AIDS is a syndrome (thus the "S") whose causes have been pretty well understood for some time. However, it is still defined as a syndrome.

Not according to people like Serge Lang

Yes & no.

If one takes the position that we do not have enough evidence to come to a particular conclusion (as Lang did), then one takes that position with respect to the information available at a particular time. I don't know at what point Lang last stated such a position. Regardless, he's been dead for nearly 9 years.

AIDS is one of the most studied diseases in all of history; we learn more about it every year. It is certainly possible to state that we know HIV causes AIDS, without disagreeing with with Lang.

It's maybe worth pointing out that syndrome is completely absent any value judgment (in keeping with the scientific tradition of modern medicine); it's literally just a combination of symptoms that occur together.

From http://dictionary.reference.com/: Greek syndromḗ concurrence, combination

As far as I understand it, AIDS is a syndrome rather than a disease because while the cause of the immune system deficiency has a single cause, many of the symptoms are caused by secondary problems that arise because of the immune system deficiency, and so the symptoms do not have a single direct cause, even though they're all indirectly the result of HIV, and the immune deficiency itself is a direct result of HIV

I think it would be more accurate to say that AIDS is a syndrome because it's defined as such. You can also speak of HIV disease[1]. HIV disease would be the disease associated with the human immunodeficiency virus. AIDS refers to a particular syndrome. They mostly overlap, but they describe slightly different concepts. My speculation is that the reason the distinction persists is mainly historical: AIDS was described and became well known before the HIV virus was discovered and was demonstrated as the causative agent.

[1] http://emedicine.medscape.com/article/211316-overview

> My speculation is that the reason the distinction persists is mainly historical ....

I imagine another reason for the distinction is that AIDS is typically a late stage of HIV infection. That is, people who develop AIDS have usually been infected with HIV for some time.

That would have played a role. No doubt.

I've tried eliminating wheat, sugar (in case it was fructose malabsorption), dairy, etc. I've tried tons of supplements like fish oil or vitamin D. Interestingly, each of those except dairy had very positive effects on my health in general (weight loss, clearer skin, elimination of seasonal depression) but had little effect on IBS symptoms.

What did improve it (but not eliminate it) was taking an SSRI, which isn't surprising since they have been shown to help in trials. My mother also has both IBS and an anxiety disorder, which is consistent with research showing that there is a genetic factor. I wouldn't be surprised if there are multiple possible underlying causes, but I really think IBS is a legitimate diagnosis.

First, it's great to hear taking the SSRI helped!

Regarding the diagnosis of IBS, What I'm saying is, I've yet to have had (or seen) a test that definitively states "yes, you have IBS".

During my time with stomach issues I've been tested for UC, Crohns disease, Celiac disease and gluten sensitivity. All the bloodwork and whatever else came back with definitive nos.

Once all of those were ruled out, then the diagnosis became "IBS". Meaning, I didn't take a test that said I had IBS, I was symptomatic and all the actual tests they could run were negative, and hence, I had IBS by default.

What that meant to me was, something is wrong, they just don't know what it is, I should keep searching and trying things to figure out what they don't understand.

I've read so many posts where people get diagnosed with IBS, take the prescribed drugs, and just suffer for the rest of their lives. I just want people to understand they should feel empowered not to settle for the IBS diagnosis and explore options to try and solve the issue for themselves (like you did via SSRI).

What do you think about the possibility that the etiology is neurological? Here's my reasoning:

* There's also no simple yes/no test for most mental illnesses

* It explains why it correlates so heavily with anxiety disorders

* It explains why it is treatable with psychotropic drugs

* Falls in line with the increasing evidence that the enteric nervous system plays a role in both IBS and anxiety

Absolutely! The other wonky thing with my health is that I have had Vagal Atrial Fibrillation (VAF) in the past (which is rare for someone in their 30s).

One trigger for VAF is indigestion in the stomach, which irritates the vagal nerve, which messes with the heart. The vagal nerve also runs into the brain, so I bet there is some form of two way conversation happening between the stomach and brain being facilitated by something like the vagal nerve.

To your point, when I was heavily symptomatic, I felt depressed (deeper then just being sad about my situation), and changing my eating habits cleared that up, and in your case, fixing the brain chemicals seemed to have benefitted your stomach.

Its just a guess on my part, but this is really all fascinating stuff.

> fixing the brain chemicals seemed to have benefitted your stomach.

How do we know the drugs didn't fix the stomach chemicals (enteric nervous system) directly, resulting in better brain function?

To bring this full-circle, this goes real well with the original article's idea that the GE system is highly coupled with the nervous system and psychological condition—it's very likely in both directions.

There was recently a post here on HN that relates to this. As a UC sufferer I found it very interesting.

> How the Gut's "Second Brain" Influences Mood and Well-Being (2010) (scientificamerican.com)

https://news.ycombinator.com/item?id=7957057

It has often been noted that "stress or feelings of anxiety, guilt or resentment seem to trigger the symptoms":

http://www.mckinley.illinois.edu/handouts/irritable_bowel_sy...

Have you considered doing a fecal transplant?

I knew people were talking shit on Hacker News, but I didn't realize that it was such a literal thing! :P

On a serious note, yes, this. I have a cousin who had really bad problems until he did such a transplant, and he said it pretty much gave him a new life.

I'm willing to try anything safe and shown to be effective scientifically. However, at the moment I have poor health insurance and little disposable income, and my GI doc wants me to do a CT scan that would cost me $1600 out of pocket to rule out IBD and a few other things before continuing. So basically I've hit a brick wall for the time being.

Have you tried fasting?

Multiple times and not just for IBS but many reasons ranging from breaking a weight loss plateau to preventing anxiety attacks after the probiotics. It definitely reduces IBS symptoms while I'm not eating, but the hunger makes me unable to think about anything but food.

I've had mild IBS-D for as long as I can remember, and I've just had a very good experience with a 7 day water fast. It's been 2 weeks since I've finished my water fast, and I've had 0 incidents. Obviously this is anecdotal, since there is very little peer reviewed research on water-fasting in general, and specifically wrt to IBS.

They know the problem; irritable bowel, but not what causes it. That's why they call it a syndrome and not a disease.

It's the same with AIDS vs HIV infection. AIDS: we don't know what causes it, but it is acquired immunodeficiency. HIV: it's a disease caused by this virus.

IBS is a "diagnosis of exclusion," so in some sense it is not a "real thing," but more accurately the "absence of other things." I really hated that answer, but it's the conclusion that more than a half-dozen different gastroenterologists came to after trying countless tests on me over the course of many years.

After a lifetime of trying to be gluten free (on and off), with limited success, I started a low-FODMAP diet on December 15, 2012 and it completely changed my life. I could not find many dietitians that knew much about it, so I mostly followed the advice of books like IBS: Free at Last! (http://amzn.com/0982063520). Now I feel much more empowered and in control.

Also, not all FODMAPs are equal. Each individual has to figure out which FODMAPs cause the most problems. Being "low FODMAP" is WAY different from being "gluten free." I eat FODMAPs all the time -- I just limit certain ones more than others and I know my limits. And even after 19 months of being low-FODMAP, I still have to consult my list of foods regularly.

Only after doctors have ruled out Crohn's disease, celiac disease, diverticulitis, endometriosis, cancer, etc., and suggest you have IBS, I highly recommend trying a low-FODMAP diet.

I had IBS-D from about the age of 10 to the age of 29. I'm 42 now. What changed for me 13 years ago is that I learned that humans require eating dietary fiber and changed my diet to accomplish that.

I eat about 40 grams of dietary fiber and drink at least a gallon of water every day. It actually takes work to reach this goal, but the plus side is that once I started doing this I have had no symptoms of IBS for the past 13 years.

Wow, that's a pretty amazing amount of fiber and a great success story. I would caution applying this advice to everyone, though. As anyone who has a lot of intestinal inflammation can tell you very quickly: fiber is like steel wool dragging through there. Ouch! I think this especially highlights how IBS is a range of causes/symptoms, not one distinct disorder.

IBS does not typically present with inflammation. Those are typically hallmarks of inflammatory bowel disease like colitis or Crohns.

http://www.healthychildren.org/English/health-issues/conditi...

There are some sources that say inflammation does play a role in IBS but every study I've read says it does not.

Very interesting. I indeed have Crohn's, not IBS. I thought they would be more closely related, but this article [1] from the CCFA has made me change my mind a little bit...

[1] http://www.ccfa.org/resources/ibs-and-ibd-two-very.html

Do you have another other dietary restrictions, other than the fiber and water? Just curious. Thanks.

No other dietary restrictions.

I also have IBS and was diagnosed years ago, but I never heard of different classifications that you mentioned, IBS-C or IBS-D. Mostly, I classify the severity as "day-to-day", workdays usually being the worst. I haven't tried consuming live cultures other than yogurt, and even then I have mixed results. Have you gotten far in your research on the types of bacteria, and do you have any resources you could share?

Edit: just read about differences between IBS-C and D and it definitely sounds like there has been some headway in the last 15 years since I was diagnosed (back then it was mostly a prognosis of "here's a colonoscopy, sorry not much else we can do"). I should definitely get re-evaluated. Thanks for mentioning this.

C is constipation. D is diarrhea. I have Crohn's and didn't know these either, but Google was my friend. I personally don't distinguish. Diarrhea largely affects individuals who have Crohn's in the colon (not me) due to the colon's role in body water absorption from fecal waste. My inflammation occurs in the ileum so I rarely, if ever, have diarrhea but I do have severe, piercing abdominal pain from scar tissue and constriction. My personal opinion from a biology background is we largely don't know jack about Crohn's/IBS and the classifications are grasping at straws. If you do want to know some of the scientific stuff the genetics side is a great place to start. NOD2 is specifically involved in Crohn's: http://en.wikipedia.org/wiki/NOD2 and you can learn a lot of interesting things about our innate immune system.

From the little research I've done, it looks like the bifidobacterium genus, in particular certain strains of bifidobacterium longum [0,1] and infantis [2], have favorable effects on IBS and anxiety. Interestingly, in [1] they noted that it was able to normalize low BDNF levels, which is one hypothesis as to how SSRIs treat anxiety and depression.

However, I picked out my probiotic specifically because it has those species (among many others), and you read what happened.

[0] http://www.ncbi.nlm.nih.gov/pubmed/17172187

[1] http://www.apa.org/monitor/2012/09/gut-feeling.aspx

[2] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886445/

Just to provide an alternate anecdote, I take probiotics fairly regularly (one to three in sequence every 1-2 weeks, or whenever I get out of whack) and have only had neutral or positive results. The flora in the probiotic is really nothing that shouldn't already be in a healthy gut, although of course you do want to be very careful as it's clear that your gut micro-biome is very important to your overall health. Just another data point.

> The flora in the probiotic is really nothing that shouldn't already be in a healthy gut

Perhaps the important factor isn't which species are present, but their distribution or some other factor of which we are still ignorant. In any case, I'm glad you've seen positive results and I may try them again in the future with single-strain supplements once this ordeal is long behind me.

If you still have IBS you might want to try http://nordicrebalance.dk/en

I was told about it recently and am going to start treatment in a couple of weeks. They claim a 95% rate in chance of improvement amongst test subjects according to [1]. There are also a few more studies on their website supporting the product. They do however seem to be a relatively new company and I haven't been able to find much information besides their website. I have been told that the doctors behind it have been researching IBS and CD for about 20 years, so that seems to be a plus.

[1]http://www.ncbi.nlm.nih.gov/pubmed/11711768

This.

Ex IBS sufferer here.

Fixed it myself after 3 years of hell from doctors who quite clearly were a) short of any realistic knowledge on the matter and b) quite clearly using me as an experimental subject for everything the drug company was pushing at the time.

Worked out how to reset it myself: just drank water for the best part of two weeks and low end carbs (bran flakes with water on) and nothing else. Felt like crap for about 4 days then started to improve. After my butt stopped wrenching daily, I introduced normal foods back one at a time over the space of 3 months, ending with meat and heavy carbs.

I got these steps from a microbiologist rather than a doctor.

That worked for me wonderfully.

Interesting that you mention anxiety. After particularly poor eating, where I start to feel physical distress, I've noticed alprazolam seems to help considerably. Likewise, for some cases of light nervousness, I've noticed pepto bismol seems to calm my nerves.

Most of my panic attacks occurred immediately after a meal as well. I discovered a couple of interesting things:

* Magnesium Citrate tablets were able to stop or lessen the attacks, but only when they occurred after a meal. I suspect the laxative effect of magnesium is responsible. * The only food that wouldn't trigger anxiety was coconut-based items, which I suspect has to do with coconut oil comprising mostly MCTs, which take less work to digest.

Brewing your own probiotics may be a safer option. People have been eating Sauerkraut for 1000s of years. I just add chopped cabbage and a tablespoon of salt into a quart-sized jar, fill with filtered water and wait a week or so until it tastes sour enough.

> I tried Primadophilus Optima and it wrecked me.

How can you be sure that taking probiotics for your IBS is the cause of your IBS getting worse?

I don't for sure. In fact, it is definitely confounded by the fact that I quit my SSRI a month and a half prior. However, the reaction I described began a day after I started the probiotic. Also, it gradually decreased in intensity over the two weeks after I stopped the probiotic and I resumed my SSRI. Just to be sure, I took another and the whole thing happened again.

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