4 ms·

Define success. There is good reason that most gastro doctors don't suggest diets as a solution and instead say things like "avoid anything that bothers you." I

by voxl 5y ago

Define success. There is good reason that most gastro doctors don't suggest diets as a solution and instead say things like "avoid anything that bothers you." It is because there is no evidence that a particular diet helps with inflammation. You might be able to avoid symptoms of pain with a particular diet, but that is only a very minor benefit. If you aren't preventing the inflammation you are still going to suffer all the worst effects of the disease. If these kids aren't getting routine colonoscopies / MRIs (like one every two years or more) to try and detect if there is any inflammation, then they have no idea if the diet is actually working for them or not. If you go to any Crohn's discussion group where it's the actual _people_ with Crohn's talking and not their parents, they will say things like: "Every asshole thinks they have 'thee diet' that will work, when they don't." See for example /r/CrohnsDisease. > while still avoiding any foods that are potential triggers for inflammation There is no evidence that specific foods are triggers of inflammation, only triggers of _symptoms_. The best guess we have is a particular type of bacteria + bad genes is the real cause of inflammation, but that bacteria exists everywhere (including drinking water).

boplicity 5y ago
This is exactly the reasoning that my gastroenterologist used. There's no placebo controlled, double blind studies that support "diet" as a treatment for Crohn's disease. Well, you know what: The same is true for open heart surgeries. (One of the most incredibly invasive procedures possible.) Actually, there are studies that support diet as an effective means of treatment. No, there aren't enough of the "right" studies that are as "high quality" as the ones supporting the efficacy of various drugs. However, "evidence" doesn't change reality, instead, it simply reflects it. You asked about success: For me, success means no active inflammation, at all. Which was achieved through a combination of drugs and diet. For others, success means no longer going to the bathroom twenty times a day. Having "regular" bowel movements. No obvious symptoms. Your comment brushed off "symptoms" as something unimportant. But, for people who are really debilitated by the disease, a change in diet that eliminates the symptoms is life changing. No need for "evidence" on that. You're right that there's no "one" diet that works for everyone, as I mentioned in my original comment. It's a learning process. However, it's also my observation that everyone with Crohn's disease gets very aware, and very specific about what they eat. (Or, they eventually face the consequences.)
- the-pigeon 5y ago
  Also if it works it works. I think people worry too much about a solution being a placebo. Yes, it may be that your solution only worked because you believed it would work. But take the win! Certainly solutions backed by double blind controlled studied are way better. But those often aren't an option, so use what is.
  - Latty 5y ago
    This is only true insofar as the "solution" doesn't cause other problems itself. People bankrupting themselves on snake oil, or having other health issues due to weird diets, or avoiding actually proven medicine are all extremely harmful.
  - amluto 5y ago
    For a disease with highly temporally variable symptoms, you don’t even need a placebo effect. You could try some treatment and randomly get better. (Go read about almost any Crohn’s RCT for which the participants had active flares. The control group generally improves a decent amount over the course of the study.)
- jcrben 5y ago
  I agree w/ you, but I'll also add that the premise that the evidence on diet is equivocal is pretty offbase. The evidence for EEN is pretty robust and held up over a couple dozen studies - see my other comment https://news.ycombinator.com/item?id=29453808#29456208 https://news.ycombinator.com/item?id=29453808#29456208
- asdfasgasdgasdg 5y ago
  I'm not sure I follow the point on open heart surgeries. What would the study be? Is there some question of fact that needs to be resolved? There are many kinds of open heart surgery too. Which one do you purport does not have any randomized trials associated with it? All of them? That would actually surprise me a little. Placebo-controlled RCTs are only feasible when it's possible to ethically apply the placebo or the treatment. Generally speaking, the types of things we do open heart surgery for, like valve replacement, coronary bypass, or pacemakers, it is impossible to ethically apply a placebo. You only need RCTs when there is some question of fact that needs to be resolved. There is no need for a random controlled trial about whether stopping all water intake will kill someone. For some types of heart surgery, this doubt does exist, but for any of those types which are not being studied with RCTs, I would guess there is not much doubt. If your heart valve is busted and it is causing you to be unable to pump blood, you can look at the pumping efficiency before and after replacement. No RCT needed. You'll note that these two factors are very different from diet. It is possible to ethically apply a control and a treatment where it comes to diet, and there is much doubt as to their efficiency for some purposes.

by voxl 5y ago

boplicity 5y ago

This is exactly the reasoning that my gastroenterologist used. There's no placebo controlled, double blind studies that support "diet" as a treatment for Crohn's disease. Well, you know what: The same is true for open heart surgeries. (One of the most incredibly invasive procedures possible.) Actually, there are studies that support diet as an effective means of treatment. No, there aren't enough of the "right" studies that are as "high quality" as the ones supporting the efficacy of various drugs. However, "evidence" doesn't change reality, instead, it simply reflects it. You asked about success: For me, success means no active inflammation, at all. Which was achieved through a combination of drugs and diet. For others, success means no longer going to the bathroom twenty times a day. Having "regular" bowel movements. No obvious symptoms. Your comment brushed off "symptoms" as something unimportant. But, for people who are really debilitated by the disease, a change in diet that eliminates the symptoms is life changing. No need for "evidence" on that. You're right that there's no "one" diet that works for everyone, as I mentioned in my original comment. It's a learning process. However, it's also my observation that everyone with Crohn's disease gets very aware, and very specific about what they eat. (Or, they eventually face the consequences.)

the-pigeon 5y ago
Also if it works it works. I think people worry too much about a solution being a placebo. Yes, it may be that your solution only worked because you believed it would work. But take the win! Certainly solutions backed by double blind controlled studied are way better. But those often aren't an option, so use what is.
- Latty 5y ago
  This is only true insofar as the "solution" doesn't cause other problems itself. People bankrupting themselves on snake oil, or having other health issues due to weird diets, or avoiding actually proven medicine are all extremely harmful.
- amluto 5y ago
  For a disease with highly temporally variable symptoms, you don’t even need a placebo effect. You could try some treatment and randomly get better. (Go read about almost any Crohn’s RCT for which the participants had active flares. The control group generally improves a decent amount over the course of the study.)
jcrben 5y ago
I agree w/ you, but I'll also add that the premise that the evidence on diet is equivocal is pretty offbase. The evidence for EEN is pretty robust and held up over a couple dozen studies - see my other comment https://news.ycombinator.com/item?id=29453808#29456208 https://news.ycombinator.com/item?id=29453808#29456208
asdfasgasdgasdg 5y ago
I'm not sure I follow the point on open heart surgeries. What would the study be? Is there some question of fact that needs to be resolved? There are many kinds of open heart surgery too. Which one do you purport does not have any randomized trials associated with it? All of them? That would actually surprise me a little. Placebo-controlled RCTs are only feasible when it's possible to ethically apply the placebo or the treatment. Generally speaking, the types of things we do open heart surgery for, like valve replacement, coronary bypass, or pacemakers, it is impossible to ethically apply a placebo. You only need RCTs when there is some question of fact that needs to be resolved. There is no need for a random controlled trial about whether stopping all water intake will kill someone. For some types of heart surgery, this doubt does exist, but for any of those types which are not being studied with RCTs, I would guess there is not much doubt. If your heart valve is busted and it is causing you to be unable to pump blood, you can look at the pumping efficiency before and after replacement. No RCT needed. You'll note that these two factors are very different from diet. It is possible to ethically apply a control and a treatment where it comes to diet, and there is much doubt as to their efficiency for some purposes.