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A lot of people have luck, especially for children, with The Specific Carbohydrate Diet, which eliminates all grains and starchy food, among other things. It's

A lot of people have luck, especially for children, with The Specific Carbohydrate Diet, which eliminates all grains and starchy food, among other things. It's based on relatively outdated science, but it still seems to work for many people. (It was created when there was a very limited understanding of the microbiome.) There's an active Facebook Group full of people who follow the diet[0]. Seattle Children's Hospital [1] uses the diet as one of the primary treatment modalities. Even if you don't choose to follow that diet, the primary goals should be to eliminate any inflammation, and also find foods that are safe to eat. Most people who do well, in terms of outcomes, learn to be very careful with what they eat. No matter what, it's a long term learning process. Eventually, you want to eat as diverse a diet as possible, while still avoiding any foods that are potential triggers for inflammation. Unfortunately, most gastroenterologists are not knowledgeable about diet, and are not helpful, in terms of dietary treatments. I would recommend finding a doctor who is supportive of both dietary and drug-based treatments, as opposed to a doctor who has the blinders on, and sees drug treatments as the only option. [0] https://www.facebook.com/groups/SCDers/ https://www.facebook.com/groups/SCDers/ [1] https://www.seattlechildrens.org/conditions/crohns-disease/ https://www.seattlechildrens.org/conditions/crohns-disease/

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.)
Terry_Roll 5y ago
>A lot of people have luck, especially for children, with The Specific Carbohydrate Diet, which eliminates all grains and starchy food, among other things Starch is the only sugar the immune system doesn't attack.

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.)

Terry_Roll 5y ago

>A lot of people have luck, especially for children, with The Specific Carbohydrate Diet, which eliminates all grains and starchy food, among other things Starch is the only sugar the immune system doesn't attack.