5 ms·

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 w

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.

bignaj 12y ago
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!
- graeme 12y ago
  What did you find miserable about it? Elimination of certain foods or something part of what you were actually eating?
  - erichmond 12y ago
    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.
    - graeme 12y ago
      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.
- bignaj 12y ago
  @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.
  - graeme 12y ago
    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.
learc83 12y ago
Have you been tested for Coeliac disease?
bmm6o 12y ago
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.
- ggchappell 12y ago
  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.
  - EGreg 12y ago
    Not according to people like Serge Lang
    - ggchappell 12y ago
      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.
  - mtdewcmu 12y ago
    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/ http://dictionary.reference.com/: Greek syndromḗ concurrence, combination
  - vidarh 12y ago
    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
jmhain 12y ago
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.
- erichmond 12y ago
  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).
  - jmhain 12y ago
    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
Barraketh 12y ago
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.
Someone 12y ago
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.
mtift 12y ago
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 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.

bignaj 12y ago

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!

graeme 12y ago
What did you find miserable about it? Elimination of certain foods or something part of what you were actually eating?
- erichmond 12y ago
  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.
  - graeme 12y ago
    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.
bignaj 12y ago
@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.
- graeme 12y ago
  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.

learc83 12y ago

Have you been tested for Coeliac disease?

bmm6o 12y ago

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.

ggchappell 12y ago
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.
- EGreg 12y ago
  Not according to people like Serge Lang
  - ggchappell 12y ago
    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.
- mtdewcmu 12y ago
  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/ http://dictionary.reference.com/: Greek syndromḗ concurrence, combination
- vidarh 12y ago
  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

jmhain 12y ago

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.

erichmond 12y ago
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).
- jmhain 12y ago
  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

Barraketh 12y ago

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.

Someone 12y ago

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.

mtift 12y ago

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 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.